Patient Stories

I have not been diagnosed as having any kind of cancer, yet the first GYN ontological surgeon I visited recommended a total hysterectomy, even though my CA-125 score was 7. I sought a second opinion and got a very different suggestion - a laparoscopic removal of my ovaries and Fallopian tubes. Everyone is so scared of ovarian and cervical cancer, and rightly so, as they are most often not discovered until they are rather advanced. However, my first opinion surgeon seemed to me to be jumping the gun. My second opinion doctor still must look at the sonograms and MRI before her final opinion, which she should be giving me this week (first week of 2014). One approach is to take everything out to prevent having to operate again in the future. The other approach is to take out only what seems threatening. It seems there really is no clear way to go to me.

Our house burned to the ground on April 4 2008. I spent the summer getting our new home furnished and when I started having pains in my abdomine in September I just assumed it was nerves left over. I saw my doctor over aperopd on months and finally he suggested I get a c-scan. I did that and they thought it was a cyst on my ovaiary or diviticulitis. I set up an appointment with a surgeon and made a date for the day after Christmas to get it taken care of. My A125 was at 350 at that point and my family doctor mentioned in passing that id it were in the high thousands they would think overian cancer but not to worry at this level. When I woke after surgery the surgeon told me I had stage 4 ovarian cancer and about 6 months to a year to live if I did nothing.

The surgeon put me in touch with Dr. David Michellin who would see me in January. He told me to forget about dying as he didn't treat with death in mind. I asked about any trials I could join so that my life might be of use if I died.

Lucky for me there was one and I did qualify because of the level of the cancer and I jumped in with both feet.

As I lay in my hospital bed on December 26th thinking about being dead in 6 months my mind went blank. It took me three days to accept the facts and three seconds to know I could do nothing about it but God could, so I have left it in His hands ever since and am still here in March 2013.

My life is good and I have no symtoms at this time. I was lucky to get treated with Advastin and that it worked. All I worry about now is my weight, because I am heavy and have type II diabetes. Not on any medication for either illnesses at this time. Praise God.

My story starts when I was 31 years old. I was having problems with my bowels and had to go to the bathroom everytime I ate.

I went to my doctor and he ran test after test and could not find anything. He finally ordered a laparoscopy be done and they found my cancer.

I had a total hysterectomy and 6 months of treatment with carboplatin and I was diagnosed as cancer free.

I did some follow up after that, being 31 years old I did not think anything about having had cancer. I went on with my life and then gave up going to the dr. I did not see any reason to anymore, I was cancer free.

When I turned 40 I started having my yearly Well Woman and mammograms done and everything was fine, including the one I had in January 2012.

May 29 of 2012: I woke up wheezing and had problems breathing and could not get in to see my family dr. as she was on maternity leave and all other drs. were full for the day. I decided to go to the walk in clinic. Something told me not to wait for an opening another day.

I went in thinking bronchitis maybe, but more than likely an asthma attack because the pollen had been high lately and I had been doing a lot of walking.

When the doctor came he he asked some questions and said he wanted to do a chest xray just to rule out a lung clot, since I had had cancer before. He was looking at the results on the lighted screen when I came out from getting dressed and before he could shut the light off, I saw a large round spot on the right side and believe me it was noticeable.

He said there was not a clot but he did want me to go to the ER and have a CT done just to make sure he had not missed something and to also have a breathing treatment. He told me I was not to go out shopping or even go home for that matter he wanted me to go straight to the ER.

When I got to the ER they did a CT and they have me my breathing treatment and an injection for pain. Which by the way did help me feel better. The dr. came in and said that there might have been a little bit of lymph node enlargement and wanted me to get in and see my family dr within the next couple of weeks.

I have never had a dr. tell me anything except at your convenience for seeing a dr. I knew something was up again, but what still not sure but have some idea.

May 31, 20012: I was able to make an appt with a family dr. for the next day and while in there had another asthma attack and had to have another breathing treatment. She then ordered a PET scan, this is where the warning bells really went off. I was lucky they had an opening the very next day.

June 6, 20012 Back to get results from family dr. Oh, forgot to tell you that I know what is going on before I even go in, I know that part of this is my asthma but with all the other tests that were done, my mind has been in overdrive just wondering what kind it was going to be.

Dr. give me the results that there are 4 different spots that are malignant on the scan and wants to send me to the oncologist who says he will see me during his lumch break that day.

Decided to go the next day so the dr. would not have to give up his lunch.

June 7, 2012: Saw oncologist today. I have 4 spots, lung, right pelvis, base of spinal column and chest wall. My dr. does not think this is correct as I have no symptoms, do not look sick and it has been 17 years since I first had cancer, he is even wondering if it was ovarian back then, but of course it has been so long ago they hospital is having problems locating my files. Dr. decided to do a biopsy on the pelvis mass to make sure first and he will do a CA-125 at my husbands insistence.

June 11, 2012: I am at the hospital to have a CT guided biopsy done on my right pelvic mass. The radiologist comes in and says okay lets get you ready for the lung biopsy, so we have to stop there and get everything right. It turns out he will not do the pelvic mass because it is right next to an artery and he does not want to take the chance of puncturing it. The test is not the most fun, but the nurse, tech and dr. were great. The radiologist had a hard time getting any kind of sample but did get a little bit that was sent off, but came back inconclusive.

Oncologist office called and scheduled me to see a thoracic surgeon to have surgical biopsy done.

June 14, 2012: Saw thoraci surgeon today and after he spoke to radiologist that did lung biopsy he decided to do his biopsy on the chest wall.

June 18, 2012: Had surgery on chest wall today and they removed part of tumor. The lab in the hospital says that it is cancer and thoracic surgeon tells me this when he visits after surgery. Appt is made to see oncologist on 6/20/12 to get results.

June 20, 2012: No lab results to get yet. Dr. cancelled appt and made if for 06/28/2012.

June 28, 2012: Dr. says that yes I have cancer it is considered Stage IV Ovarian. Oh, and my CA-125 is 89, normal is 35 and under. He went over all the life expectanty stuff that my husband was asking and then we got down to treatment. He said we could do nothing and see what happens or we could start treatment. I said I already knew what I was going to do and my husband said he thought we should discuss it first, like there is anything to discusss. I know he wanted to be in on the decision making, but my mind was already made up and it was my decision to make. That may seem mean, but I did not want to wait another minute. Now we need the por-a-cath. I did not go with one the first time, but I will never go without one ever again. They make is so much easier. So back to the thoracic surgeon we go, oh but we have a problem, my thoracic surgeon is going to be out of town on Monday so he can't do my surgery, oh well we have someone new to do it. So off I go to see the surgeon to get info I need. While walking down the room to see the new dr, I see my surgeon and tell him I am mad at him because he is going to be out of town on Monday and can't do my surgery like he promised me but he said he could do it tomorrow Friday. Happy! Happy! You know how it is when you find a dr. you like even if you have only seen him 1 time before.

June 29, 2012: It has been one month today that I went to the walk-in clinic. My port-a-cath is being inserted today. Will not have to have a general anesthetic, but will be put out for a while.

July 3, 2012: Went to see my oncologist today for blood work and to find out about my first chemo treatment. Blood work is fine and treatment is scheduled for July 5, 2012. I will get treatments every 3 weeks and after the 3rd one he will rescan and see if there is any change and if not will try new medicine.

July 5, 2012: I am here and guess what, my orders are not signed. My husband is about to blow a gasket and I am one of those who says he will sign them, when he gets here. So the nurse takes us back to at least let us know what is going to happen and give us info on medication that I will be taking. The carboplatin I have had before, 17 years ago, but the taxol is new and it can cause an allergic reaction within the 1st 15 minutes of getting it if a person were to have one, so they have to watch me for the 1st 15 minutes once they give it to me. My oncologist finally shows up about 1/2 and hour late but my orders get signed and he is apologizing profusely. The doctor had told me I would lose tufts of hair, but the nurse told me I would lose all of it. We will see who is right. These infusion nurses are great. A 6 hour day turned into an 8 hour day with the delays, but it is done. I can now go home and see how I feel.

For the next couple of weeks I will be getting labs done once a week and then will have my next treatment. So far no real hair loss but my scalp itches like crazy. I did not get in to get my haircut before hand so there are strands of hair that just kind of fall out and it drives me nuts, so I sit and run my fingers thru it and even more comes out, but not enough to make a difference.

July 26, 2012: 2nd treatment and guess what, as of today my hair is coming out in clumps, excatly 3 weeks after my 1st treatment. I will be bald within a couple of days, I guess the nurse was right. My brothers and sisters have asked that we move to Fargo be closer to them, so that if we need any help they will be there for us. Our son has been helping but he has to work and he can't always be there, so we decided we would and this way I could go to Roger Maris Cancer Center in Fargo. I am so excited. I very seldom get to see them. We have moved to Fargo and I can see new oncologist Dr. Preston Steen on Friday, August 17, 2012. This is the day after I should have had my 3rd treatment, but what can you do.

August 17, 2012 Meeting Dr. Steen for 1st time today, with husband, sister and nephew. All we do today and is talk about his philosophy of treatment and what he thinks. He says he will do a total of 6 treatments and then rescan to see if any changes and then decide if they will change meds. He agreed with my 1st oncologist that I did not look sick and do not have any symptons. So we schedule my next treatment for next week.

August 23, 2012: 1st treatment at Roger Maris and get what. Orders aren't signed, but does not take long for them to get signed and off we go. I thought the infusion nurses were nice in Bismarck, they hold nothing on these nurses. These ladies are great. When I left after treatment they actually hugged me. I love it. I have to have a xgeva and nulasta injection after my treatments and they sure don't make me feel good. Have to be honest in lots of pain from the meds, but expected that. Day 9-day 15 are usually the worst. The start date is usually day 10 like clockwork but can fluctuate.

November 9. 2012: I had my 6th treatment on Oct. 25, 2012 and now it is time for another scan. Will get the results on the 15th when I am scheduled for another treatment.

November 9, 2012: I got a call from the nurse practitioner. The tumor in my chest wall is gone. They do not know if they removed the entire thing during my biopsy surgery or if the chemo killed it, but there is some fluid around my lungs and a some lymph node change otherwise all else is the same.

November 15, 2012: Saw dr. and he reiterated the same thing and said we would continue with the last 2 treatments as I can only have 8 of this combination. He is going to reduce it as my hands and feet are very numb.

November 21, 2012: I had my 8th treatment the other day and am now here for my rescan. I will get the results after Christmas on Dec. 28, 2012

December 28, 2012: Dr. is very pleased. Rescan is showing that the fluid from around my lung is gone and the lymph node and all other tumors have shrunk. We will continue treatment in 30 days as he wants my body to recuperate and see if some of the neuropathy disappears. Oh, by the way my CA-125 is down to 19, which is its all time low during treatment. The dr. did a CA-125 every 3 weeks and during that time it went up a little bit 2 times but went down little by little every other time. So I see my dr. on Jan 24 and at that time we will start the new treatment. I believe we will be doing some type of pill.

All in all I am very happy with the results but I also know that they can change at anytime and I will have to continue to be monitored for the rest of my life, however long that my be. I am planning on at least another 17 years.

Update to story need to slow down a lot of words misspelled or left out! And how could I have left out Wife and Aunt, no disrespect just in a hurry. Roof repairs will be done 10/20/2012, then calling CTCA for appointment. Will write results.

Deborah, Wife,Mom,Sister Daughter,Aunt.

I had lower left lobe of lung removed 02/2010. At that Imelda they made incision on neck to check lymph nodes for cancer, all clear before surgery. Relief so had lobe removed chest tube was awful, had it in for a month. I kept my OBGYN appt in 06 /2010.At this time I told Dr. I had sharp pains in abdomen, to describe now felt like small fireworks exploding in stomach, not real painful but bothersome. I was told by Dr I was working to hard and try to slow down. I insisted maybe cancer, since my sister had vaginal cancer, and first cousin had vaginal cancer too. I was told I was not to worry. Really after lung surgery I thought maybe Dr is right and let it go.

By October was working again and felt I couldn't sit up in a chair all day, told my hubby and we both thought maybe muscles just weak from surgery. The pain did not go away, it was a deep burning pain in both sides. And when they had done my lung surgery they found gangrene in left shoulder so thought maybe just left over pain. Put a numbing patch on sides just kept on going to work. By January of 2011 started feeling full after small piece of a PBJ sandwich, by Feb stomach was bloated to size of 8th month of pregnancy, so called family doctor, we were living in Indy at time so chose to wait till trip back to Ohio planned. S Family Dr. Thought might be infection of digestive track and tried meds, which didn't help by next day was in ER with such pain from big stomach I could no longer take it. At ER did scan and blood test was told not cancer see Family Dr on Monday gave me shot of demoral let me go, but told me to see surgeon. (For what I had no idea). So knew of surgeon that had done my two boys hernia surgeries so called them. In mean time my family Dr was given ER report so had me go to hospital to have stomach drained on weds.. Then got in to see surgeon on Friday, surgeon asked why I was there, I advised ER told me to get surgeon I knew them so called. He was lost till I advised. Had 10 pounds of fluid removed on weds. He went and looked at pathology report and came back and said, “Your fluid was full of cancer, you need to see oncologist.”

So I had full hystrom. Cancer removed from stomach and both sides of abdomen. Then chemo, carbo, taxol, and one other I can't remember the third. CA 125 only dropped to 40 so I got two extra treatments finally dropped to 23. In Feb of 2012 had hernia repair screws and mesh from above grin to rib cage. Now I have staples in lung, screws in abdomen. But really wasn't bad. By April of 2012 Ca125 went up to 63 so had me wait till August it went up to 192. Now have been told to wait and see till Dec of 2012 then start chemo. Meet a couple named Darrell and Sara they went to CTCA and advised me to go there, this is not advertisement! Darrell had colon cancer, colon exploded after surgery it was bad but year later he looked great. So now planning to go to CTCA but really scared. I had port under skin on abdomen but never chest port and don't want one, I guess you got to do what you got to do. I will keep updating and also praying for all with cancer, someone out there has to find a cure. That's why I joined clinical study if I don’t recover maybe my tissue can help another, by the way my ovaries were not enlarged at all, I also had ultrasound done in 2008 which showed ovaries were size of raisins. Good luck to all

Deborah, mom, sister daughter

It all started when I was 32 and the doctor found a large tumor the size of a grapefruit in my uterus . I was immediately taken for surgery and had a complete hysterectomy . I was told the tumor was cancerous but had not spread so no treatment was given. That was 1991. Around May of 1993 I started having a lot of pain and bloating. My gyn dr told me it was adhesions from surgery. For the next 6 months I kept going back to the Dr with the same pain they did numerous CT scans different test any thing you can think of and found nothing. I kept insisting the pain was getting worse so at one ER visit they found I had blood in my stools and ordered a colonoscopy . By the end of the week they took me in and found out the tumors had infiltrated into my colon. Three days later I was back in surgery this time they had to remove part of my colon and put a colostomy bag on, my whole abdomen area had tumors all over liver too. An oncologist was called and he told me that my cancer was ovarian stage 4 and that most women diagnosed have about 6 months to live. I was 34. I had 6 months of the sisplatin and taxol chemo. I am now 56 years old. Thank God for all the prayers that went out for me, for I know that's why I'm still here in great health now. Had my reversal colostomy in 1998. So stay strong and think positive. P.s. cute note I never lost one strand of hair:) during chemo, Dr and nurses were amazed.

I was 23 at the time and the year 1993. I went to my gyn at the time because I could feel something through my pelvis and some discomfort after intercourse.

He did an examine and could feel a mass. I did not have any insurance at the time. He said this could be stool or a mass and because you don't have any insurance you gonna have to go downtown to Hutzel Hospital in Detroit. I got scared and did not go back, but two months later (Jan 1994) I had to go to the hospital because the mass grew and I couldn't have intercourse due to pain. I also had constipation. I had a complete hysterectomy. I had a very large tumor on right ovary and small tumor on left ovary. At that time what I was told that it a low malignant ovarian cancer, it was considered to be a new cell type and with surgery I was cured. Had ascites but no chemo at that time.

Seven months later a new mass develops and was told it was cancer. Went to a Gyn Cancer specialist who performed a biopsy and was told it's a cyst. Cyst was not removed.

In 2000 I develop pelvic pain again after intercourse. Went to my GP who felt since I had a hysteretomy she should do my PAP's and didn't need to see a gyn. I got know where with her with my complaints. I went to a Nurse practioner for gyn examine. She palpated mass/old cyst. I went to see her husband who is a Gynecologists. I followed with him for almost a year. Examines, ultrasounds and Cat Scans all normal. He was sending for my old records from my surgery in Jan 1994, that took forever.

Finally I said something is wrong so he said I will contact your previous Gyn Cancer specialist and remove the cyst. Had surgery and surprise with metastatic ovarian cancer in the peritoneal. I had an abdominal debulking and adhesions removed from my small bowels. The cancer was named low grade serous papillary ovarian cancer.

Had six cycles of carbo/taxol and have been in remission since. Ca-125 all normal.

hi my name is lilly i was ill for 12 months before i got the news, iv'e got ovarian cancer .i feel my family don’t understand .

My name is Sherri. Just before my 48th birthday I was very active. I was exercising 3 to 4 days a week taking krav maga classes. I was feeling stronger than I ever had.

I started becoming bloated and gaining weight for no reason. I noticed I was getting tired alot. I made an appointment with my family doctor. She gave me an stomach x-ray and sent me right to the hospital for a CT scan. I still wasn't worried. I assumed it was just a precaution. After the results came back they transported me to the main Oakwood Hospital in Dearborn. After I arrived they started prepping me for surgery. I had never had any type of surgery before an became very upset.

When I woke up the Cancer Doctor was there and explained that I had stage 3 ovarian cancer. The whole thing was surreal. I went from the strongest I've ever been (Physically and Mentally) to the weakest in one day.

I had a very tough time pulling myself together. I would spend days in the house scared and crying.

I was very lucky to have a wonderful husband, family, friends and Doctor. My husband was by my side every day. My friends and family really showed how much they love me by doing their best to care for me. I love Doctor Michael Hicks. He is positive, caring and brilliant. He saved my life. I didn't realize the day I woke up with him at my bedside how lucky I was. He truly is a hero.

I had a hysterectomy and 6 chemo treatments and there is no evidence of disease. I had my port removed 2 days ago.

There is life after ovarian cancer. You have to keep the faith. Stay away from reading negative things on line. It doesn't have anything to do with your case, and treatments have come a long way and are progressing all the time.

Anyone who would like to e-mail me please feel free. I would love to help if I can.

Sherri
[email protected]

My sister got diagnosed with stage 3 ovarian cancer. My sister found out when she went in for a cat scan on her stomach and they told her that her ovaries were covered in cancer. They took her into surgery 8 days before Christmas last year and they took a thirty pound tumor from her. After her surgery she had been really skinny and she started chemo a month after. Unfortunately the chemo was making her sicker. Her school had supported her, they had fundraisers in honor of her, and they made t-shirts and bracelets and any money they could to save her life. Later on she was put in the hospital permanently until she felt better. Every day I was worried because I live in Florida and she lived in Indiana where I’m from she was very lucky she had a boyfriend that asked her to marry him and she said yes but sadly in march she passed away with the ring on her finger class ring and letterman jacket it was the saddest day of my life I was only thirteen and she was seventeen how could I understand I loved her everyday and miss her every now I do cancer events in honor of her now she is in peace and warmth and that’s all I can ask for.

I have always been exceptionally healthy until ovarian cancer at the age of 51 years old. Never been in the hospital except for my one childbirth. I've always been small. Then I started feeling extremely bloated. I thought my weight had finally caught up with me. I went through a complete hysterectomy. My oncologist said he was 95% sure it wouldn’t be cancer. Imagine my surprise when it was positive. Went through 5 months of chemo. Lost my hair…got down to 92 lbs….Lucky for me I have wonderful parents (in their 70's who came to Florida to take care of me), great friends and co-workers. It has been 3-1/2 years and I feel good again. I became a grandma and loving life. Still can't believe it happened to me. Which I'm sure everyone says. Keep the faith and never give up.

I was 42 years old and the mother of a young daughter aged 12. My life seemed to be evolving into a stable, sane, and very happy life after an awful divorce and a number of years of re-establishing myself in both career and home. Then on June 27, 2001 it all came tumbling down. I hadn't been feeling well, and I mean actually sick with abdominal pain and constipation for three days. The pain was becoming unbearable and in the night I thought of going to the Emergency but my daughter was sleeping so I convinced myself that it would pass. The next day, while at work I realized that something was terribly wrong. Without a word to anyone, I left work and went to the hospital....within six hours I was on the operating table. I had peritonitis and the surgeons were sure it was a burst appendix. Upon doing a scope they realized it was something much more serious and they stopped the surgery....then packed me off to the closest hospital with a gynecological/oncological surgeon.

I know today, that decision plays a big part in my being here. I was diagnosed with Stage IIIc, Grade 3, clear cell epithelial ovarian cancer. The larger tumors (over 2.5 cm) had metastasized to my colon, my uterus, and my omentum. After a complete debaulking and six rounds of Taxol/Carboplatin I finally went into remission....if you can actually do that with this type of cancer. Three years to almost the day I had my first recurrence (2004). After waiting approx 15 months to do treatment b/c I wasn't symptomatic I had another surgery which removed a tumor from my ascending colon, one from my lower bowel and one from the psoas muscle in my right hip. Again six rounds of taxol/carbo and another four years 'cancer free'....I was rediagnosed with a tumor again on my Psoas muscle in my right hip in Nov 2010....am presently waiting for surgery.

During this time I have been involved in raising funds for OVCA through establishing a run, a motorcycle drive. I have been involved with refurbishing a lounge for gyn/oncological patients, providing CD and players in Chemo suites and starting a support group for survivors. My life has never been the same, but it has also never been so fulfilling.

With my third diagnoses and almost 10 years behind me I began a blog of my journey at whencancerknocks.blogspot.com.

That is the physical/medical story...for the emotional, psychological and spiritual one feel free to follow me on my blog......it’s been a hellava journey but one I wouldn't have wanted to miss.

Reading most of these stories made me feel like mine had already been written by every one else.

I went to the doctor on multiple occasions due to bloating and pain in my abdomen. I was told by 4 doctors that I had a hernia. 4!!! Finally in July the pain was so bad I went back in because I could actually grasp something out of the ordinary, thru my stomach. It felt huge. AGAIN I was told it was hernia, however this doctor did do me one favor. She told me I'd need to see my OBGYN to manage it. I saw him 4 days later and he knew right away it wasn't a hernia. A CT followed and the next day I was told I had peritoneal carcinoma...that was some scary already. I met my oncologist the next week and he told me he thought it was borderline CA. I just had surgery on the 4 and it was much more extensive than they thought. I lost my ovaries (I had had a partial hysterectomy last year), the rest of my cervix, my appendix, part of my large and small intestines and my omentum. I also had a colon resection and had to have my diaphragm scraped. Even my oncologist was shocked when the pathology came back (it was sent out to Johns Hopkins) as stage 3 micro papillary serous carcinoma. I developed an infection in my liver so I'm home on IV antibiotics and will then start chemo after they confirm the infection is all gone.

I have so many questions about this disease…if my lymph nodes are negative and my ovaries are now gone, can it recur??? Why are doctors allow to blow us off without any type of tests when we go to them for help. Why can't a CA125 be part of a physical or at least done every few years? Why do women have to wait until they are 40 for a mammogram. Sorry, I digress but I'm still kind of angry that this is where I am.

Anyway, that's my story and I'm praying it will have a happy ending and that we (my family) learn some lessons out of this. I pray that research moves quickly for women with this disease. And I pray that women will listen to their bodies and pursue further testing if they feel something is wrong. I truly regret that I waited so long.

Good luck and God bless all of you now fighting this and any of you that will be learning you have this disease in the future.

My Loving Family and Friends

My name is Suzanne, single, no children. I'm a flight attendant and a wilderness lover. I live in beautiful Alaska. Last week I felt pressure in my left abdomen and went to the doctor. After many test and two surgeries I have been diagnosed with ovarian cancer.

This was shocking news as I am always healthy and active. My friends and family have surrounded me with their love and support. I have many highs and lows. I still feel like I'm dreaming and want to wake up. I'm home recovering from surgery, surrounded by love from my friends, family, and dog, Boo Boo.

Chemo- next step. Trying to stay positive, the tears seem to flow a lot. I feel for everyone dealing with cancer.

Hello, In April 1996 I went in to have a full hysterecomy. I remembering waking up hearing the doctor talking to my family. I was awake enough to ask him questions and if i was ok. He told me my ovaries was fully covered with cancer.He then told me I had stage 3 ovarian cancer. I was so scared, I couldn't even speak. All I thought about was my 3 children. And how was i gonna be able to take care of them sick . I started chemo the next week. 3 months I was so sick and lost weight. Then i stopped taking them. I am here today folks because I know God has a purpose for me to be here. Its been 15 years. We serve an awesome God. Always go and be check yearly.God Bless

My grandmother was the greatest person I ever knew. She was sweet and never became upset with me, no matter what. She had always been there since I was born. Growing up, I just expected her to always be there.

When my grandmother was diagnosed with Ovarian Cancer, I didn't know much about this type of cancer. I thought she would beat it and everything would go back to normal. But it didn't. She was diagnosed in the 3rd stage. She took chemo and medications. Before she was diagnosed, her belly began to get really big as if she were pregnant. When she started chemo, she lost a lot of weight.

A few months passed and she became very ill and was hospitalized for two weeks. Finally, the doctors said she could go home or go to a hospice center. She lived for six more days.

On Sunday, June 14th at 1:34 AM, my mother called 911 because she took a turn for the worse. She was rushed to the hospital. We all knew this was the end. She lived for a few more hours in the hospital then passed away...peacefully.

No matter how sick she had been, she remained positive and loving. I was her favorite grandchild and she loved me very very much. It has been a few years, but it still is hard to live without her. I felt lost in depression because of the fact that she was gone. Why did this happen to her? She was the nicest person I knew. It especially hurt that she had died just two days before my 5th grade graduation. Lots of kids get to grow up into their 30's and still have their grandmothers, but mine was taken when I was 12.

I know that she no longer suffers. I just wish her cancer could have been cured. I hope that no other woman has to go through what she went through. I will always love and remember her. Always.

At the end of October '09 I was diagnosed with ovarian cancer. I had all the syptoms just like other women have described. I keept going to my GP and was always told it was my irrital bowel that was the problem. Then one day I went back to my GP with a different complaint, my right breast was red and inflamed and within a week it had doubled in size. I was referred to the parapet clinic and got an appointment the following week. I didn't think much of it at first 'til i was told it was worrying, but i had to wait a week on results. I was sent for every scan CT, MRI then a week later I was told the worse possible news i could ever want to here OVARIAN CANCER WITH POSSIBLE INFLAMMATORY BREAST CANCER. I hate to think if my breast didn't show the symptoms what would have happened to me. I had a pelvic mass, omental caking. My treatment was chemo and an operation that took 7 months. I was glad when I finished chemo, it was hard going in and out of the hospital. Now I have been in remmission for 10 months and now I have a scare as my CA125 has gone up from 12 to 320 and i have some symptoms, constipation, blotted stomach and pain. SO whats NEXT? am being optismic what else can it be?

My name is Joanne.

On 10th of April 2009 aged 68. I was admitted to the emergency department of Epping hospital Melbourne, as I had a huge swollen abdomen. I couldn't eat, I couldn't drink I couldn't pass urine or go to the toilet. This had all started suddenly. I thought I had a kidney stone. I had seen my GP on Thursday the 6th of April and she had tried to get me booked in for a CT scan. I couldn't get a booking before Monday the 10th. By that time I was so swollen and in excruciating pain I could hardly walk. When I got to the local country hospital I broke down and cried when handed a large bottle of drink to take before the CT scan.

I had been losing weight for awhile and put it down to being busy with a sick husband. (He has since passed away with Multiple Myeloma). Another hard to diagnose cancer. We were both healthy people.

When the radiologist took the scan he had to stop suddenly as I was so ill. He then asked me if i would be willing to go to Epping Hospital. I would have gone to the moon. I had 7.3 liters of fluid removed.

Few days later I was diagnosed with advanced ovarian cancer. I had three tumors; one over my left ovary, one near my navel and one near my appendix. When I saw the surgeon he looked me in the eye and said "There is no cure" He explained all about the chemo and his expectations but said I was in charge. He then said "Let’s see how long we can keep you on the planet". He repeated this again next time I saw Him. After four treatments of chemo I was booked in for an operation to remove the shrunken tumors. Four months had passed by this time and I was doing alright on the chemo. My tumor markers had gone down significantly.

A couple of days after the operation the surgeon came in to talk with me. He said he had removed the shrunken tumors and taken out my appendix but when he got to the pelvis he discovered live cancer on my bowel. It hadn't been picked up as my tumor markers had been dropping down. He was very disappointed and said he could have saved himself a few hours work if he'd known. He didn't want to remove my bowel as I would have had to have a bag and he was aiming for quality of life. I then had to start the chemo all over again. The whole process took from 10th of April to 27th November. I have been gaining strength and for the last few months I feel as if I'm getting on top of it. I have also just had my three monthly clinic appointment this week and was informed by my oncologist that my tumor markers were down to seven.

Thank you for giving me this opportunity to share part of my story. I hope it helps others. You do have to take charge of your own life. I have learnt so much during this time. I knew my time was not over on this earth. I believe God has something for me to do. I look after a five acre property. I pace myself and don't worry about the things that used to bother me. I try to stay healthy. I eat fruit and vegetables especially those recommended by the cancer council. I take my dog walking around the property and exercise. It is good to be alive and one thing I know. I will never be afraid of cancer again.

In February 2004, I went to an OB/GYN as I had been having lower abdominal pains for months and was having issues with incontinence. At 48, I knew I shouldn't be having incontinence.

After my examination at the doctor's office, I asked him what he thought and he replied "well, I think it's a tumor and "cancer" hasn't left the building". He sent me for bloodwork and a pelvic ultrasound and told me he'd have the results back on Monday. It was, without a doubt, the longest weekend of my life. When the doctor finally called back on Monday, my husband & I both got on the phone as the doctor said, "well, kid, I wish I had better news, but it looks like cancer ... ovarian cancer".

Ovarian cancer? I never knew anyone who'd had this type of cancer and after going online to check it out - I was scared to death!

After a complete hysterectomy and debulking, I woke up in my hospital room in the middle of the night and found that I was alone. I called my husband at the hotel and he came right over. The good news was that the GYN oncologist thought she had gotten all of the cancer, but it had spread from the pelvic area into my abdomen. I was stage 3C and would be required to endure 8 rounds of chemo (taxol/carboplatin), one every 3 weeks.

When the GYN came to visit me, she said that I had a stubborn "type" of cancer cell - called "clear cell"; fortunately, a chemo treatment for "clear cell" was now available and my body responded very well to the treatment. I had pills for nausea and was never sick - just very tired and lost my hair, which for me was very difficult. After finishing chemo, my CA-125 number was low and has remained so for almost 6-1/2 years.

I found out the meaning of life and love while fighting for my life. My husband cared for me like a baby, cooking for me and forcing me to eat even when I didn't want to. He never missed a doctor's appointment or a round of chemo. He kept my spirits up, refusing to leave me alone if I was depressed.

We live in a small rural part of Alaska. Friends and people that we barely knew cooked for us, opened up a bank account for donations and sent me get well cards, usually with money. A lot of people knew that we didn't have health insurance. My parents live in Atlanta and there were prayer chains from Georgia to Alaska. In August '04, I had my last chemo. For a year, I had CAT scans/CA125s and now I only have my CA125 every 6 months and my number is still very low (6).

I do have anxiety that the cancer will return, but I do mostly manage to control that fear by only allowing it "front and center stage" for brief moments. After a few moments, I pray and push those thoughts out of my mind - choosing instead to concentrate on living instead of the fear of dying.

There is residual fall-out from the hysterectomy, unfortunately. As I have a "little weight on my bones", I developed an abdominal hernia which has required 2 surgeries. They were both necessary to repair the hernia and clear the bowel obstruction. After 2 surgeries, the hernia has returned and I have since learned that bowel obstructions quite often happen in conjunction with abdominal hernias. I have been hearing more and more about abdominal hernias as a result of hysterectomies. My surgeon has told me that I need to lose 100 pounds and keep it off in order for the hernia repair to actually work. So while I made it through ovarian cancer, I still have another big hurdle to overcome.

Since my year bout with ovarian cancer, I have gone through it with 2 close friends and we are all three alive and well.

This is the lesson that I have learned:

Live. Laugh. Love. Life is not a dress rehearsal. Feel free to email me at: [email protected]

My husband and I had a difficult relationship with our only child and his wife. When I was first diagnosed, he suddenly realized he loved me and was devastated, and his wife became affectionate and caring. I am now on relapse 3, but have enjoyed nearly 8 years of family happiness and closeness. Now they have a baby, 7 months, and I feel so lucky I am here to see him. He is a merry little boy. I don't know what the future will bring or how long it is but these past years of joy and love have been so wonderful. And my darling husband is an angel of caring. Ovarian cancer has brought us all together.

My 16 year old duaghter was dx with serous borderline ovarian tumor with noninvasive implants last month. This has been so shocking and hard to understand. Her treatment so far was only removal of the tumor which was on the right ovary, removal of implant on right tube and removal of 2 implants on peritineal wall. We are seeking opinions regarding removal of the right ovary and tube. I want to be aggressive to help prevent recurrance and protect her from invasive cancer, but the doctors of course want to save her fertility. But since she is only 16, being a mother is many years away! Does anyone have any insight for us?

Hi, my daughter Carly who is 24 has been diagnosed with serous borderline ovarian cancer stage 3 with invasive implants - very confusing as borderline tumours are not supposed to spread. She has had a full hysterectomy and is now on taxol/carboplatin chemo. Is there anyone out there who has now or in the past had this very rare type of borderline tumour and more importantly how they have coped and what their treatment and prognosis is - thanks x

I was diagnosed with Ovarian Cancer in March of 2010, just 4 days short of my 50th birthday. I went to the doctors in early March after experiencing back pain, bloating and getting a period after a year. I thought these symptoms were all part of menopause. Wrong! After a total hysterectomy, I was told that I had Stage 3C Ovarian Cancer. I was not all that shocked when I heard the word Cancer, but the stage upset me. This only happens to other people…not me. I am now participating in a clinical trial. I just finished the first phase and starting the second phase. It involves IV and IP treatments. I am now on a 21 day cycle of avastin. I will finish up @ June 2011. My CT scans have been good. (NED) and CA125 has been below 15. Life is good. I only have one piece of advice…….Listen to your body and address any/all issues out of the norm. Listen to your body. As for hitting the big 50…….it wasn't it was all cracked up to be. I can't wait until 51 !! Good Health……

My wife is 52 and has low back and pelvic pain for a month now with 3 visits to the ER, and 2 ultrasounds and 2 CT scans. They have said her ovaries and uterus are bulky but tumors have been found and her lymph nodes are slightly swollen in her back. She finally say gyn and did a biopsy this week. Can anyone offer some insight is this something we should be worried about as we are. Thanks

My symptoms were lack of appetite, loss of usual energy, difficulty breathing, very tender abdomen and what I thought was IBS. A nurse PA had done my yearly physical July 2007 and dismissed my suggestion of a colonoscopy because I had one two years previously. When my regular physician saw my BMP he called and suggested a GB scan as my SGOT AND SGPT were elevated about 20 points. The GB scan let to CXR, Thoracentesis, CT scan, ovarian cancer staging surgery, and chemo. I received Taxol and Carboplatin every three weeks for six treatments, finishing on January 31, 2008. My CA 125 went from 427 to 6.4. In June of 2008 I was back feeling well and enjoying life.

In November of 2009 my Ca 125 gradually started rising. As of May 28, 2010 it is 47. For the most part I feel well. My PET scan of July 1, 2010 show an enlarged lymph node compatible with recurrent neoplastic disease. There is a ventral hernia containing a knuckle of small bowel but chest and abdomen is negative of additional neoplastic disease.

I have read about Dicer and Doscha proteins and wonder if there is anyway to stimulate these to help fight disease. Also I am wondering about detox diets ie, kale and other veggie smoothies. What about the cyberknife? or other noninvasive directed radiation to the enlarged lymph node? [2.8 CM intra aorticocaval lymph node mass just beneath the right renal artery and left renal vein. The node is between SMA,SMV and abdominal aorta.]

Surgery and chemo does not seem to be a good option. I am concerned with quality of life and keeping costs down even though I have good insurance. If someone has input into my current situation I would be glad to entertain suggestions.

Thanks for listening.

I was one of the lucky ones. I was 58 and I had been having pains in my back/side for months and had been constipated for about 10 days. I went to my doctor and he ordered a CT scan. It showed a large mass on my left ovary and I was scheduled to see an oncologist. Just that name scared me. The doctor explained what options I had depending on whether it was cancer and if it spread and at what stage it was. The biopsy showed that it was stage 1a. I had a total hysterectomy and didn't require any chemo treatments. My surgeon told me "Someone was watching over you". He said that he doesn't see too many patients at stage 1a, they're usually more advanced. Also the tumor was attached to my back that's what was causing the back pain.

I was diagnosed with Stage III ovarian cancer in 1983 shortly after my college graduation. Like many others, I was not aware someone as young as me could get ovarian cancer. I went to the Gynecologist for the first time in my life because I was having discomfort in my abdominal area, especially when my bladder was full, and I figured at my age it was time to get checked out in case I would find Mr. Right and decide to start a family someday.

The doctor felt some masses in my pelvic region and sent me for a sonogram. At the time he did not tell me he felt anything. I found out I had a problem from the technicians and then confirmed it with the doctor. I was scheduled for surgery a month later.

They did not know it was ovarian cancer until they did the surgery. Radiology procedures have come a long way since then. 26 years ago they could not always tell by looking at an x-ray and I'm not sure they even had the CA-125 test back then.

I had 6 treatments of chemotherapy (3 different medicines every 21 days), a biopsy surgery(which was negative) and two more treatments of chemo.

I'm now 48 years old, been married to my soul mate for the last 18 years, and happy to be alive. For those of you like me who were young when you were diagnosed and may not be able to have children of your own because of it, just focus on the fact that you are still here and take one day at a time. Like me, you may find someone who is okay not having children or you can always adopt. I spend my time spoiling all my nieces and nephews.

Even though it has been 26 years I still see the Oncologist and have the CA 125 test and a pelvic and abdominal sonogram once a year.

Where to begin. Well last summer my mom just wasn't herself. She was quiet and subdued,and her energy wasn't the same.She has 3 grandchildren, 2 are mine and my brother has one; now ages 9 ,8 , and 4. She truly lives for them, she is a grandmother who gets down and plays with the kids all day. I had noticed that she seemed more tired. I thought, maybe she was just depressed. I even had asked her if she was happy,She just didn't seem herself.Well in July She had thought that she had pulled a muscle,I said just go to the doctor. She didn't.She was never one to run to the doctor. My mom in the summer lives about 1 hour from me at a little lake house. Each week that I would go up there,she was looking more tired.I even had some friends comment that she didn't look herself. Finally her stomach started to blow up,it was also hard. She went to a md. Who ordered a Ct. She had gone to The Dr. on Friday and her Ct.was scheduled for Monday. All weekend I had a bad feeling I just knew it wasn't going to be good. Well Monday August 17,2009 came. Hours after her scan the Dr.called they wanted her to come in for the results. She said give them to me over the phone……… they said it looks like you have ovarian cancer that had spread to the stomach…………………. Our world had just changed……. I went home and did a ton of research.which made me feel very scared for her. Her and my dad moved in with My husband and our 2 kids… I wanted to take care of her.. Before her surgery they also discovered,she had an undiagnosed thyroid condition.So surgery was put off. So she was started on chemo right away. Her first round of Chemo she ended up in the hospital with blood clots in both her lungs,she spent a week in the hospital,she had another round of chemo then on Oct 13th 2009 she had her surgery. She had a fabulous surgeon. He cut her vertically about 12 to 16 inches long he removed her ovaries each had large tumors, her omentum her adrenal glad had a large tumor.also she had 20 acorn size tumors scattered through her stomach.In all she had 3 large tumors and 20 small ones He was very confident he got all visible signs of cancer. She contined with Chemo. I also got her to go to a MD. Who treats naturally So she got put a regiment with vitamins and suppliments,and she was receiving infusions with vit C,B's and magnesium… In January.They said she is now in remission. Her and my Dad went to Florida for the winter and she had continued treatment down there.Both the Chemo and the Vitamin infusions and suppliments. It was very hard to watch my mom go through the suffering.Plus she is the type of person who feels like she was a burden on us.She is such a caregiver,so it was hard for her to be the one in need. I love My mom…this has been such a challenging time for all of us. She was stage 3c when she was diagosed. Im trying not to worry about when it will come back.How soon? Will she have the strength to do it again? Will I have the strenth to support her? Its always in the back of my mind. I also wanted to say the vitamins and infusions definatly helped with her energy level. She is not super diligent, Im the BIG NAG, about it. Im more into natural health than her. Trying to build up your immune system naturally. Well that’s all for now my mom just tured 60 in March That was very comforting………

Ruth was slim, vibrant and active at age 60. She worked full time in a sewing factory kept house for herself and our aging mother. Took care of her grandson when he got home from school. She did lwn work, papered and painted her walls etc. Never drank or smoked. But she did have ovarian cysts and problems with her periods. She only got pregnant once even though she did nothing to prevent it. She complined about back pain which m.d.'s told her was arthritis. She state she had abdominal pain on both sides where her ovaries would be. her Gyn said nothing was wrong. Her primary care told her she was getting older and to slow and that maybe it was her nerves. At 62 she was vomiting after most meals and her bowel habits were irregular. They told her that nothing was wrong and to relax. On 01-01-04 she was in E.R. when a visiting gyn/oncologist heard her talking to the on call m.d. He diagnosed her as Ovarian Cancer stage 3-4. Did her debulking and chemo treatments until she died at age 64. Our beautiful, caring, loving sister, daughter, mom and nana was gone. Earlier diagnosis could have helped. Why wsn't it recognized???

Ruth was slim, vibrant and active at age 60. She worked full time in a sewing factory kept house for herself and our aging mother. Took care of her grandson when he got home from school. She did lawn work, papered and painted her walls etc. Never drank or smoked. But she did have ovarian cysts and problems with her periods. She only got pregnant once even though she did nothing to prevent it.

She complained about back pain which m.d.'s told her was arthritis. She state she had abdominal pain on both sides where her ovaries would be. Her Gyn said nothing was wrong. Her primary care told her she was getting older and to slow down and that maybe it was her nerves. At 62 she was vomiting after most meals and her bowel habits were irregular. They told her that nothing was wrong and to relax. On 01-01-04 she was in E.R. when a visiting gyn/oncologist heard her talking to the on call m.d.

He diagnosed her as Ovarian Cancer stage 3-4. Did her debulking and chemo treatments until she died at age 64. Our beautiful, caring, loving sister, daughter, mom and nana was gone. Earlier diagnosis could have helped. Why wsn't it recognized???

My name is Marissa, 47, married with a 15 year old daughter. I have been diagnosed with OVCA in Nov. 2009. It was a shock! I had my routine physical with my OBYGYNE in the US in May 2009, and all test results were good. Pap and mammogram were good along wth the usual tests. In June, we went home for good to our home country, the Philippines. I felt good,and I was slimmer. Then came Nov., I was going to the restroom many times a day. I thought I was just having the "usual" loose bowels. I did not go to the doctor right away. Then one night, it was so painful, then I vomited. I decided to see a Gastroenterologist because I thought it was my stomach. He felt a mass in the lower left side of my abdomen. He sent for an ultrasound right away. It was an 8 cm. mass. I have had my uterus removed in 2001, negative of any cancer. It was my left ovary. I decided to see an OBYGYNE/Oncologist to check on it. My oncologist advised that the mass be removed right away. I was scheduled for surgery two days after (Nov. 23rd). Pathology confirmed, it was a burst left ovary. My oncologist and surgeon removed my omentum, both ovaries and fallopian tubes. I was staged OVCA 1-C. I have 2 more sessions to go and I would be done with my Chemo (6 sessions of Paclitaxel/Carboplatin). I feel the effects of chemo (numbness of feet, joint/ body pains, and stomach problems)....but I'll make it. My CA 125 was 10.5 the last time. I pray that it stays that way forever... I wish they make the ultrasound test a routine test just like Pap Smear. I could not help but think that maybe I would have known earlier that my ovay was not normal anymore (and not go thru Chemo) if I was in the Philippines. Ultrasound is like a routine thing with OBYGYNE here, esp. for me who had Hysterectomy before. I lived and worked as a teacher in the US for 8 years, had very good health insurance, but was never offered this test by my OBGYNE there, although he knew my history. Now I know Ovarian cancer can not be detected by just having Pap Smear. Let us all be vigilant about our health and pray for each other...God bless us all...

Last summer at Hopkins I had surgery to remove 2 ft of my right colon due to stage 1 colon cancer. For about 6 months Ive had pain on lower right pain of abdomen & had a colonoscopy 2 wks ago & was told to get a cat scan now the dr wants me to get a pet scan which Ive never had. He told me that from the cat scan I have inflamed lymph nodes, Im scared.If theres anything there do I got back to the colon surgeon or a gyn surgeon? Scared

I woke up May 10,2009 and went to pee like I do every morning. I had blood in my urine. I got so scared. My stomach had been the size of a pregnant woman in her 9th month all of April. My doctor didn't know what was wrong. After tests to see if I was having internal bleeding, because I was taking blood thinners due to blood clots in my lungs and one in my right leg. I was going to get an ultra sound done later that morning on the 10th. I looked in the mirror and I was white as a sheet. I am a light skinned black woman. I said a prayer. But I was so scared. I brushed my teeth, washed up, got dressed as quick as I could. Drove to my grandmother's house shaking all the way and praying. I made it there in about 8 minutes. She lives about 15 to 20 minutes away. Got up the stairs and rung the bell. As soon as she answered the door I told her to call emergency I had to got to the hospital,and that there was blood in my urine. I sat nervous and waiting, trying to stay calm because I have panic attacks. The EMT team came took me to the hospital. I peed again and the urine was the color of cranberry juice. The nurse said I could have a urinary tract infection. I was just scared. I waited in the room with my mother, grandmother and aunt. The doctor came in got my history and told me they were going to do a ct scan. Another nurse appeared and told me to drink this fluid for the test. I took the test. Then waited. The doctor came back in and told me I had ovarian cancer. I screamed. Cried my eyes out. They released me and I went home to my grandmother's. I couldn't sleep. I was so uncomfortable and scared. I went to my doctor the next afternoon. I was admitted to the hospital that evening. I met my Oncologist. She told me I had Ovarian Cancer stage 4 and ascites. She also told me there was too much disease to do surgery. I had tests done. There were tumors in both ovaries, on my abdominal wall, one in my liver, on on my spine, and a bunch in my omentum. The next morning I got my stomach tapped. They took 6 liters of fluid off. I had to have a blood transfusion because my hemoglobin was at 7. I had chemo after that. Had an allergic to the chemo so they stopped it. The next morning I met with my doctor, she changed the chemo drugs and I had the chemo the next day. I got my stomach tapped one more time. They took 6 liters that time also. I was released after being in the hospital for 10 days. When I got home my son put me on an alkaline diet. No meat, dairy or grains. Fruits and Vegetables only. I had my stomach tapped the week after I got home. They took 4 liters that time. And that was the last time I had to have it tapped. I got chemo again 21 days after the first time. I was on a 21 day cycle. I found out my CA125 tumor marker was 16,000. When I had the test again a month later it was 13,000. I started taking alkaline supplements and an immune booster, so I wouldn't catch a cold or the flu. I was going crazy only eating fruits and veggies. I continued chemo but it was ravishing my body. They had to give me another blood transfusion and a platelet transfusion and an iron transfusion as well as shots to build my blood levels. My CA125 went down to 734 after my 3rd cycle. They finally reduced my chemo dose. I was put on a weekly cycle. My tumor marker continued to drop, 37, then to 26. I had two weeks to go but the chemo was still to strong. I had my last treatment at the end of October. My levels were too low to continue. In December 2009 I had my second PET scan. No cancer anywhere. I just went to the doctor yesterday February 10,2010. My CA 125 is 18. I am in remission. I don't want the surgery. I will continue to take these alkaline supplements. I feel like they are the reason the cancer is too small to detected. My email is [email protected]

Hello to everyone, my name is Ira. I am 34 years old. In October 2009 I was diagnosed with OvCa, stage IV. I was really shocked, because my little daughter was 1.5 months only, was happy mama and didn't have any pains.The surgery was done immediately. Then 6 courses of chemo every 21 days. I have already had 4. My Ca125 got down to 10. I never told anyone about my situation, just to my parents and husband. I would like to find some friends with similar situation just to speak to them sometimes. Maybe I can also help someone. Please write me on my email: [email protected]

Thanks!

My daughter sent me this site in the hope of helping someone out there that has possibly gone through something similar.

Every day of life is a new challenge. It's how we deal with it, is the challenge.

In 2006 at age 60, I was diagnosed with Ovarian Cancer and it was found in a very late stage due to no symtoms. They call it the silent killer. The challenge was first of all to get over the shock of being told I had cancer. I have never been sick in my life, never smoked, occasional drink and always ate right and took care of myself. They started me on chemo for 3 months before going in for surgery. At the end of that 3 months, my husband who was 62 at that time, has a massive heart attack and dies. Another challenge: shock again. I'm not a young woman, I was working but didn't expect my golden years would be alone and I still had that surgery lingering out there. People around me were in more shock than I was so I was continually comforting them and trying to maintain some type of self control and yet go through my mourning period. I had my surgery with my 3 children by my side, and continued for 15 more months of chemo. Now I'm a working woman, never got sick from the chemo by the way and would go right back to work after my treatment, bald and a widow. As if this wasn't enough challenges I had been through, I had another one. My youngest son dies....suicide at age 39. This of all my challenges was the worst of all. I could deal with having chemo, being alone, being bald. But to lose your child is the hardest hit I could have ever imagined or taken. It's been 1 1/2 years now and I'm still not over it. No one in my family is or probably ever will be.

The moral of this story is.....I have been cancer free for 16 months now, have my hair back, still working and have wonderful children, family and friends surrounding me. I was a sympathic person before all this and now I am much more compassionate, emphathetic and caring for people around me. Life doesn't stop with all these hurdles that hit us nor do I want it to stop. I have 9 grandchildren that need me, friends that need me and family that need me and I need them. I still have too much living to do. So with a strong faith, love from family and friends and a positive attitude, we really can get through anything life throws at us. Sherry

It was about mid July this year, I thought I was putting on more weight as usual, I looked down at my upper stomach and noticed it was getting bigger, as I said I thought I was just putting on weight. After a couple of weeks it felt like a big lump about the size of a large grapefruit (that’s how big I thought it was anyway). I thought I had better go to the Doctor and get it checked out. I went to him beginning of August, told him that I was experiencing a slight pull lower abdomen and that my stomach looked and felt bloated. Get this!! He told me yeah that’ll be right, (insinuating that was just fat. I said to him yeah yeah I know I’m fat blah blah blah). So we left it at that, I thought I would go home and start watching what I was eating AGAIN!!! But, 2 weeks later it felt like it was getting bigger so I went back to him, who then, bloody hell, gave me some D-Gas tablets, how's that for a diagnosis. So I went away for 2 weeks took the D-Gas tablets (was actually very funny as my husband laughed a bit and said, why on earth did he give you those, you have no problem D-Gasing (A---Hole), mind you I thought it was funny as well, we both started cracking up laughing.

Anyhow, couple of weeks later I went back said that something was not right, even though I was not experiencing any pain whatsoever, I knew something was not quite right.

He then got me to lie on the bed in his surgery and he had a look and feel around my stomach, then said oh your right there is something there. We both talked and he said he was pretty sure it was only a cyst (probably dermoid in origin). He got me to go and have a ultrasound, which showed that there was an ovarian cyst the size of a rugby ball, (about 23/16cm in total). At that stage still thinking it was a dermoid cyst, I didn’t think much more really, I knew I had to have it out at some stage. He then acted quite fast, a referral went to the gynaecologist at our local hospital and another referral to the radiology department asking for a CT scan. Everything more or less started from there, a week later I had an appointment with Radiology, blood test (CA-125), and a couple of days later I had an appointment to see the Gynaecologist. The blood test came back quite raised (even tho I got told it was slightly raised - whateva) and he could see something untoward going on in the cyst and also other affected areas.

I was in hospital that following week having supposedly a total abdominal hysterectomy. I could say all went well but I am not going to. The next day he came and saw me with the news. I had Ovarian Cancer in which cells had also attached to my bladder, bowel, omentum and appendix. He could not do a total hysterectomy as he said it was a bit too complicated ended up having subtotal hysterectomy, he left the cervix in, now I have to see an Oncologist/Gynaecologist from another hospital who will probably need to do further surgery. (I didn’t know what to say really, or what to think). I asked him to come back the next day to give me time to think things over. The next day came and I said to him I wanted to know everything didn’t matter how trivial or how bad it may be I wanted to know.

He said to me they were not there to prolong life they were there to cure it - this meant a lot at the time (but have learnt a lot since then).'

. I went into hospital 17th October, needed to get over the hysterectomy first. Had first lot of chemo treatment 17 November which consisted of two drugs Paclitaxel and Carboplatin. The Paclitaxel (taxol) was a 3 hour administer, and the Carboplatin 1 hour. I was 8mins into the Taxol and had a really bad allergic reaction to it, they had to give me something to hurry up and counteract it. They flushed this through as fast as possible and then half n hour later tried the Carboplatin which was fine, so now they either have to find something else to replace the Taxol while I continue on the Carboplatin. Today is the 7 day post chemo, havent felt too bad, still early days yet.

I have a husband (really supportive), a son who is home from University for 3 months and the rest of my family is wonderful and supportive also (mum, dad, sisters, brothers etc). Oh yeah live in New Zealand. Email: [email protected]

I first want to say how glad I am that I found this website. The stories have been an inspiration and they fill me with such hope. In March 2008 my mother age 64 began losing weight and her hands were swelled. She had been diagnosed with irritable bowel syndrome years earlier. Her and my father were under extreme stress and depression. They were on the verge of losing their home of 30 years and their business of 40 years because of the bad economy. I am the 2nd eldest daughter and me and my older sister thought the tiredness and weightloss were all part of her life situation. She went to the doctors for her hands in December 2007 and they told her to take ibuprofren. Finally in May 2008 she was sent to a arthritis specialist who gave her a lung x-ray because he suspected a deadly auto-immune disease that turns your body to stone. We were terrified but not as much as when they found a mass on the x-ray in her abdomen. We were lucky she was only 5'2 and it showed up. Immediate hysterectomy with debulking. she was 3C. After operation first question out of my mouth was How many years has a patient of yours with the same stage of ovarian cancer survived? He answered 22 years I have clung to those words since Six months of cheomo up in Jan 2009. CA-125 at 6. It is now October 2009 and her CA-125 is creeping up first 25 now 67. We have cat-scan on Wednesday then go from there. My mother had not been to a gynecologist in 5 years since hers moved to Florida. She had been to every other doctor for high blood pressure to cholesterol. Why was CA-125 not standard? I am scared but hopeful. I always come back to this website I want survival stories from all you brave, courageous and inspiring women. Thank You!

My mother was the most beautiful woman I had ever known. Even when I was in jr. high and high school the boys would all stare at her with awe. She had a natural beauty, the kind with no need for makeup and just jeans and t-shirts. She was also extremely stubborn. When she was 41 she had started having pains in her lower side. Being stubborn and tough she didn't go to the doctor for months until the pain was so unbearable she could no longer take it. She really hadn't been to the gynecologist since my sister was born, who was now 13. When she had finally gone to her doctor they found a cyst on her ovaries and decided to have a routine operation to remove it. It was during the operation that they realized that it was not just a cyst. She was diagnosed with Stage 4 Ovarian Cancer at the age of 41. She was such a fighter! You seriously never knew that she was ever in pain. She didn't want anyone to feel sorry for her or to know she wasn't doing well. My mother died on Thursday, July 26, 2001 at the age of 45. She worked her full time job up until the Friday before she passed away. She passed away on her vacation week that she was going to come and see me. Tough woman but God called her home and I am thankful that my faith lets me know I will see her again someday.

My sister, Lea Ann, began having night sweats, feeling pain and fatigue the Fall of 2008. Since she was diagnosed with MS the year before, she thought she was having a flare-up and maybe needed her MS medication changed. She struggled to get examined by her neurologist who finally changed her meds over the phone. In December Lea Ann developed a cough that would not go away. She made several visits to her primary care doctor and was given anti-biotics and cough medicine and finally a chest x-ray which was clear. Her pain and fatigue steadily got worse. She also started having night sweats, hair loss, and lost weight.

Suspecting something hormonal she went to her OB/GYN in February 2009. That doctor only ran blood tests and did not examine her. The diagnosis was chronic fatigue syndrome and estrogen umbers that were a little low. Lea Ann was given a low dose of estrogen. The estrogen did nothing for her symptoms so she quit taking it after a short time.

Lea Ann continued working as a 3rd grade teacher in spite of her discomfort. She used her rolling teacher chair as a walker to get around the classroom. Her periods stopped in March and by May she had lost almost 50 pounds. She made an appointment with a new neurologist for early June so she would not have to miss a school day. The doctor reviewed all her symptoms and told her something was wrong and MS was not causing most of her trouble. Her primary care doctor ordered a body scan that showed a large tumor on one ovary, several tumors in her liver and 2 tumors in one lung.

Lea Ann was referred to an oncologist at MD Anderson in Houston, Texas. She found out she has stage 4 ovarian cancer. Chemo began in July. She had some trouble with the drugs, some reactions and poor blood numbers caused delays. By September the doctor ordered another body scan to check the tumors. The tumors had grown in spite of the chemo. Lea Ann was so weak and the cancer so aggressive the doctor thought no more could be done. She had 3-6 months.

We had all been so full of hope. Lea Ann has 2 kids, ages 6 & 3. This was horrible news.

Lea Ann was admitted to hospice care at home on September 21, 2009. She has good days and bad days. She is in the last stages now. We pray for a peaceful passing.

Women do not ignore your pain or dismiss your symptoms. Question your doctor if you don’t like the diagnosis. Lea Ann lost a 7 month head start on fighting her cancer due to bad doctoring.

My story I guess begins in January 2008. I am a grandmother raising 3 granddaughters, I ran a day-care home and I knew that I had 4-7 hernias in my stomach. I started having a lot of pain. After children were picked up my husband took me to the ER. I had many tests and they kept me from wednesday-Friday. I finally gave them permission to do surgury to repair the hernias, I stayed in hospital for one week; since I had staples I had to go back the following week to remove them. The doctor asked me if I wanted the good news first or the bad news. I had no idea what the doctor meant, he told me he had found a tumor and removed it and sent it for biopsy. The result came back stage 4 Ovarian-Peritoneal Cancer. I had to go the next week to see a gynecologist. They ordered a ct scan and some bloodwork and said I needed to start chemo. I was terrified but was ready to fight. I had many people and churches praying and I totally gave it to the Lord. I went through 4 cycles of chemo, lost 30 lbs but got through it. All blood tests, CA-125 and ct scans are within normal range. I go see my oncologist at the end of Dec 2009, hoping all is within normal range.

I will tell you please don't give up and stay strong because miracles do happen.

It was February 2008. My Mom was 61 yrs old. Too bad it wasn't something else, the distended belly. Sure enough, our worst fears were to be known, my Mom was diagnosed with Stage IV Ovarian Cancer. Man, I mean what the?

This is a woman whom 8 yrs prior had a kidney transplant. I was hoping since we had this hereditary disease, maybe somehow we were spared. Well, guess again. So, luckily for our family (my brother and I specifically), my Mom is a fighter. She was ready for surgery almost immediately. Removal of the ovaries was first.

By the grace of God, my Mom is blessed with 2 awesome sisters! Both rushed to be with her right away. My Mom does have a significant other, but like many men, really do not know how to deal with it. So he does what he can, stopping by for support and and helping financially. He loves her dearly, that we all know!

Meanwhile, my Mom lives upstate NY, so for her surgery and treatment, she ended up having to go 2 hrs away to NYC. To her comfort though, she was among some of the same doctors which performed her kidney transplant. They were needed to monitor the amount and combo of the chemo, so as to not ruin the kidney! Jeez.

All seemed to go good the first round of chemo. We all tag-teamed it together. My Aunt Sue first for surgery, with my Aunt Arlene, Aunt Arlene 2nd, for her first round of chemo, my Brother Scott 3rd , me 4th and then last my Mom's great friend Sandy. During that time, it was super fun too. For my Mom's chemo, we had to go to NYC, well not too shabby when the patient felt good enough to be a tourist at the same time. Eating out, seeing shows, etc..too cool. I will be forever grateful for these times!

Once it neared the end of that round..tests were taken and all seemed good to go as far as stopping chemo.

Well, spots showed up elsewhere as well as her brain. Man oh man. So radiation was done. More are on the brain now, she has since had radiosurgery also. Awaiting tests which are coming in October.

The beautiful thing is, my Mom got to Illinois for the 2nd round of chemo she ended up needing. My Aunt Sue works as a nurse at Northwestern Hospital at Evanston. Wonderful that my mom has had the care she deserves, the doctors in Illinois thought it smart not to do more debulking right away and go for more chemo..proving well. My Mom is heading home for 2 weeks, to be with her friends and Bernie for his 75th birthay. She will return to Illinois for an MRI and another CT scan…fingers are crossed!!!! After that, I am hoping and praying my Mom is heading back home to enjoy many more years of her life!

She has now tested for Genetics..it is genetic. We had thought it came from nowhere. My Aunt Arlene, 1 yr after my Mom's diagnosis, she too has it. Hers was caught sooner..so hopefully all goes well here too!

I'm very concerned. I have an appt. for Sept 15, with my primary care physician. I'm 38 yrs old. I want to know what I can do as soon as I can! I too have the Polycystic Kidneys, and some symptoms are similar, makes it tougher. All I know is I am extremely blessed with the strongest, most adventurous, willing and able, loving, enduring, passionate Mom in the world!! She is and forever will be my True Hero. Her strength, hope and love will carry me through many, many trials and tribulations, triumphs and life in general for me. I thank you Mom..for everything!!! And more to come!! I love you with all my heart and soul!! Your daughter, Marla-Sue

Tears. And more tears. How could this be true? How could I leave my 16 year-old daughter who spent 2 years in foster care after her bio-mom left her. How could I leave my husband after he cared for his mom and dad going through chemo at the same time when they left him at the age of 30? Horrible two weeks: Diagnosis–ovarian cancer, identity theft, lawsuit from my cousin, burglary from my daughter’s ex-boyfriend stalker, then daughter’s bio-drug family contacting her through Facebook. Tears from her: “Look at my new little brother and sister. Aren’t they cute?” Surgery: Wait two weeks for the pathology results. See a psychologist for depression. Are you freaking kidding me??? I just need some sleep. Then the phone call. You are cancer free. You do not need further treatment. You had two volleyball-sized low malignant tumors removed. Sorry for the spleen laceration but it is fixed. Lucky, lucky me.

PART I

Hi there. June 2008 I experienced hellish pain in my "sitz" area (perineum); incredible pressure on my bladder, bloating and constant constipation. I was really worried. My husband said I was just fat, and shouldn’t bother the doctors and increase everyone's health care cost. He told me to diet. Well, if I didn't eat, I had no pain. OK, I'm large, but the pain was very strange. The bloating made me look pregnant. This all began in little bits from May - June.

Finally July 7,2008, when I could barely walk from the pain, but was still soldiering on at work, I went to my primary care, who sent me immediately to a CT scan (run, don't walk) and then to my OBGYN.

My OBGYN was marvelous, and after some more tests, she convinced me to have surgery. Surgery couldn't be scheduled until July 31 because of schedules and vacations. I wonder if this month of delay made any kind of difference.

In any case, the pain was also becoming intolerable.

July 31 my husband dropped me off at the hospital (by myself) and I got admitted etc. Fought with the CNA over whether I could take my glasses into surgery. I finally had her get another Nurse and I gave them a piece of my mind. They said normally people don't come in alone and I reminded them my husband left me at the door and I would be alone until he came back around 9 p.m. So they "let" me have my glasses. JEEZ. When I told my doc about this, and surgery people (in the pre op) they were like "what was that all about, glasses are no problem, we just put a sticker on the case."

Even with the pending surgery, pain and fear, all I could think about was how I was planning on dealing with the customer service issues when I got out!

Surgery revealed grapefruit size ovarian tumor - malignant and big cyst -not malignant - on other ovary. Tumor had to be peeled off my bowel and bladder. No wonder I couldn't "go" and was in pain. T.A.H., pus appendix (sob!) omentum, etc. all gone. I never had children, but it was now all gone. Pathology pretty darned yuccho. Stage III. Wondering would it have been different if surgery were sooner? Wondering why nothing found at my annual exam in April? Wondering why on earth I agreed to stop taking bc pills - the problems began nearly a month after I stopped taking them (to see if I really was premenopausal).

By the way, I have spoken to other women in similar sitch who got the cancer within a few months of going off bc pills at doc request. Hmmmmm.

In hospital 6 days. Long recovery. Nearly 10 weeks before I went back to work.

Part 2.

Returned to work after 10 weeks, after Total Ab. Hyster. July 30. Pathology a bit scary. Began Taxil/Carboplatin in August 25, less than 4 weeks after surgery. Made me sick, but the good thing was I had medical leave; time to learn how to deal with it. 6 mos of the taxil and Carbo. When I went back to work in October, I was still going through chemo. I would do the chemo on Thursday, work on Friday (they pumped me full of steroids so I didn't crash until second day after chemo.) Crash Sat and Sun and Monday and then drag myself to work on Tuesday. I am a pretty tough cookie. Even when I got really weak, I kept going -I don’t like to bother the doc. Managed to get through and keep working. One transfusion. The weakness was the worst part.

Jan 2009, trying to decide next step. Decided on a break. Doc offered blind study. Hmmmm, possibly no treatment in the study. Hmmmm. Husband didn't want me to do more treatment - he wanted my time and to take trips, etc. (Mercy - are men selfish or what?)

Doc said I had twelve weeks to decide, so I took that time to get my strength back. Finally I ask the doctor: "Absent the study, what would you recommend to someone with my pathology and family history." Aha - must know how to ask the question! She said. "More chemo. Taxil 12 mos. Will lose hair again."

By the way, hair was never an issue. I bought wigs but loved bald. Easy care. Never bothered me, just bothered the hoi polloi of West Hartford. Parochial little town!

March 2009, my Dad helped me decide on more treatment. Taxil for 12 treatments which isn't that bad. I have a day to nap and knit. Very positive -looking forward to it. Went camping in June. Hiking. Biking. Walking helps a lot. Stay strong. I'm a warrior! Look out. I LOVE MY DOC, however, she is super smart and the BOMB. Totally. I am so lucky to have her on my side. God bless the doctors and nurses.

PART II

Returned to work after 10 weeks, after Total Ab. Hyster. July 30. Pathology a bit scarey.Began Taxil/Carboplatin August 25, less than 4 weeks after surgery. MAde me sick, but the good thing was I had medical leave time to learn how to deal with it. 6 mos of the taxil and Carbo. When I went back to work in October, I was still going through chemo. I would do the chemo on Thursday, work on Friday (they pumped me full of steriods so I didn't crash until second day After chemo.) Crash Sat and Sun and Monday and then drag myself to work on Tuesday. I am a pretty tough cookie. Even when I got really weak, I kept going -I dont like to bother the doc. Managed to get through and keep working. One transfusion. The weakness was the worst part.

Jan 2009, trying to decide next step.decided on a break. Doc offered blind study. HMMMMM. Possibly no treatment in the study. HMMMMM. Husband didn't want me to do more treatment - he wanted my time and to take trips, etc. (Mercy - are men selfish or what)

Doc said I had twelve weeks to decide, so I took that time to get my strength back. FINALLY I ask the doc: "Absent the study, what would you recommend to someone with my pathology and family history." Aha - must know how to ask the question! She said. "More chemo. Taxil 12 mos. Will lose hair again." March 2009 My Dad helped me decide on more treatment. Taxil for 12 treatments.It isn't that bad. I have a day to nap and knit. very positive -lookign forward. Went camping in JUNE. Hiking. Biking. Walking helps a lot. Stay strong. I'm a warrior! Look out. I LOVE MY DOC however, she is super smart and the BOMB. Totally. I am so lucky to have her on my side. God bless the doctors and nurses.

My story begins on a misty evening back in November 2008. The 2nd to be exact. I know this because I had to leave a Rascal Flatts concert early due to some pretty severe pains I was having during the show.

We left the venue in a hurry because I just wanted to go lie down. My husband, Jon and my friend Lisa were insistent on my going to the emergency room. But…me being stubborn insisted on, NOT. I offered to go home and take some bowel cleaning agent to see if this would help relieve the pain. It did not but I was afraid they would tell me I had some bowel movement problem or worst, gas. I didn't want to be laughed right out of the hospital. Sometimes I wished I had gone. Not that would have made too much of a difference.

I continued with this pain in my side for another eight weeks or so living on Tylenol and motrin. Never seeming to find the time to go see my doctor. I own a Beauty Shop and the holidays were arriving. Business was good and getting better. Leaving me with very little time and the time I did have I was too tired to go anywere.

Christmas was over and I finally got frustrated enough with the pain that I picked up the telephone and called my family physician. He took me the next day.

After arriving and trying to explain the pain I was having in my left side which radiated down my pelvic area and lower back to my nicely padded seat. He scratched his head, leaving me to wonder whether he had any idea what I was talking about. Well he didn't have any answers, so he ordered a few test. I guess he thought it was all related to my womenly parts, sending me for a pap smear, a mammogram, an MRI of the back and of course the test that revealed it all an ultrasound of the pelvic area and abdomen.

If there was one thing I would like to see the medical profession do for women it would be to make ultresounds a routine test along with Paps and Mamo's. Anyway, my Pap test came back fine as did the mamogram. If the ultrasound had not been done they may not have found the tumor which was attached to the colan wall thus causing the pain I was experiencing.

A week later, I return to my doctor, for the results of all the test that had been done. He tells me they had found something on my left ovary but was not sure if it was only a cyst. It was very common thing for women to have these cyst and they usually erupt on their own. Not knowing for sure he orders another ultrasound after I completed my next menstrual cycle. By the way, FYI, I would do a pelvic ultrasound over a mammogram anyday.

Again, we get the same results. Something there. He sends me to a OBGYN to confirm, it is a mass. But whether it is cancerous or not, she does not know. She orders more test. Now she orders a CA-125 test to test for cancer.

Another week passes before I see her smiling face. She does not believe it to be cancer because the CA-125 test came back negative. She suggests that we do a total hysterectomy since I'm pass the child bearing years and I had a few cyst on the right ovary. At this point we just needed to relieve the pain. I agreed with the same confidence in which she had.

It was all set. We were glad everything had indicated no sign of cancer. Surgery would take place on March 10th. Sure I was nervous but I couldn't wait to be relieved of the pain I had already endured for some five months. I knew I would be out of commission for a few short weeks, but then life would get back to some sort of normalcy.

Well, God had other plans for me. He had been trying to tell me to slow down for quite some time and I was just, well, simply defiant. Now he was gonna force me to. Boy and did he. Can't quite figure it out yet, but there has to be some resoan to this madness.

I was official, On March 10th,2009 I was informed that the tumor that had been found was indeed cancerous. Still thinking, they had caught it early enough left me with lots of hope for a recovery. I was thinking to myself, it's not such a bad thing and I'm young and healthy except for the tumor, which they had removed. I thought, I'll be fine, thank God they found it early. We'll take things one day at a time.

Obviously, these doctors were quite concerned. Only days after my surgery thay had me running here, and there, and everywhere, for this test, and that test, leaving me no time to rest up from the surgery.

By this point I had been referred to an oncologist. I went back to see her a few days later for the test results. Not good, not good at all. She sat me in her small, white, very cold office to give me the news. She tried very hard to break this news to me gently but no matter what she said, or how she said it, took me by surprise. There is no one on this earth that can understand being told you are going to die unless you've been down this road. A gut wrenching illness just flows through every ounce of your being.

I left her office in a very dark state of mind. Can't even imagine what it must have been like for my husband to hear that he will lose his wife and not grow old together as planned. He held up well, for me I'm sure, telling me not to give up hope and cancer treatments have come so far, I'll be around a long time. I love him so much for that. He still to this day reminds me to stay strong. Don't ever give up.

I have lots to live for, a very beautiful daughter, however old she gets, who needs me and a very sweet eight year old granddaughter who I so very much would like nothing more than to be at her high school graduation, wedding and around for the first great grandchild. They need me to stay strong and fight, fight, fight. Which is exactly what I intend to do. For them as well as for myself.

So as this story goes, I will continue to have hope and faith that the good Lord will take care of me. But, in the mean time although I have faith, I can't stop thinking there is a reason for all this happening. I say my goal in life was to always put a smile on someone's face if even for a short second, this does not change. I will still always try to see the beauty of the rose and not its thorns. What is it that I'm supposed to do? All I can come up with is continue to make people smile through my strengh and to ask the medical profession to work on ultrasounds for women before it is too late. I'm not sure yet, nor will I possibly ever know, what my purpose here on earth is but I hope I've started by telling my story to you.

Please know, so far so good. Just finished with my second round of chemo. I'm doing well thus far and I make a cute little bald lady.

I thank you for letting me tell my story, it is good therapy for me to write this. I wish you all good health and love. I leave it up to the good Lord, release your burdens to Him and He will handle it all for you as He is doing for me. Continue to pray.

I have read all the stories here. My mom is my best friend. My mom is 69 years old and have been complaining about her stomach was getting bigger, she also complained of bleeding after menopause which I know would be a serious problem.

I took her to my doctor where they did an ultrasound and discover her uterus was 9mm in size which is twice the size of a normal uterus. She claimed it was uterine fibroids which she has known about for years. Unfortunately this was in January, the doctor told her he would not go any further until she switch her insurance and did not give her any further information or results.

It's presently June, I pressed my mother to go see a new doctor. Finally with continous off and on bleeding she went to another gyn who finally agreed they need to do a hysteroctomy with ovarian debulking her CA-125 are 145 and one mass in the uterus and one on her ovary. Not to mention she has a hernia that she had fix 5 years ago.

Reading everyone's story has help me cope with a lot of built up fustrations. She is my best friend and thinking that she's in pain or life possibly without her, tears my heart out. I know I have to stay strong for her and I will try. All of your stories have helped me. I know this will be a battle and I am ready. My Faith will keep me strong.

Thank you ALL for sharing

Saturday, January 19, 2008

A poem, even though people that write poems seem to bore me. :)

Sympathize

I was diagnosed with ovarian cancer stage 3 in November 08. I had had about two weeks of bloating and little abdominal pain. I had not felt "good" all year...feeling very tired, run-down and blamed it on allergies.

When I was diagnosed I had a CA125 level of 2750! I guess they want you to be 30 and below! After surgery, where my surgeon/oncologist removed my right ovary (where the mass was); as much of the omentum (lining of my abdomen) as possiblit--as it was dotted with tumors; and he peeled my bowels off of my uterus, my CA 125 level dropped to 850!

From the moment I was diagnosed I had no doubt in my ever-loving mind that I would beat this thing. I kept a positive attitude all through everything--I wasn't in denial..but there was no sense in crying...I had a job to do. Even the doctors and nurses said I was different from the average patient.

I started my chemo of Taxol; carboplatin and Avastin (on clinical trial) in early December. Well, by February my count was down to EIGHT!!! YAY!!!

I finished my last session of the multiple drug chemo and my count is down to four. I will now go every three weeks for just the Avastin, for the next year. I don't mind it at all.

The third and the sixth chemo sessions really kicked my butt. But I have not had horrible problems...just multiple side effects that kind of wear you down. I get tired, very tired...but I have learned to be patient and do what I can and rest when I need to rest.

This is the first time I have visited a cancer site on line. I didn't want to read bad things on the internet...I didn't want to get discouraged. My partner is a nurse and she bore the burden of doing all the research, sorting fact from fiction; reading the stories that didn't have a good ending. It was harder on her and my family and friends than it was on me, I swear. She would "dole out" information to me as she thought I could handle it/understand it.

I feel very fortunate that I am going to make it through this with only minor "glitches" along the way. I feel that having a positive attitude, doing what they tell you to do, making yourself get up and get going as much as you can do really helps.

My doctor is amazed, but I am not that shocked by how this ended up--as I said, I knew I was going to beat it...I just didn't know it was going to happen THIS FAST!

I send my good thoughts and vibes to all out there who are fighting this fight. Keep a smile on your face and think good thoughts...I know I am!

I went for gastric by pass surgery in Jan of 06. I couldn't wait to get started on my new life. Well it was a new life but not the one I really wanted to have. While I was in surgery they found my cancer on my ovaries and intestine and abd wall. They opened me from my breast bone down so they could see if they could see anymore cancer. Well the doctor did not know for sure if it was cancer so he just closed me up . Then the path reports came back. CANCER. Well by that time I had MRSA of the wound that had opened and was draining. When I saw my cancer doctor he said I needed surgery but if he did it then he would not even give me a 50% chance. So I spent almost 6 months on a wound vac. My doctor wouldn't start chemo because of the infection for 5 months into this. Then I did round one of chemo was to have surgery when my md decided to do IP chemo before. So in Nov 08 I finally had surgery. All went well. However I really seem to be having a hard time now dealing with things. I dont know if it is because before now I had to fight so hard. Now I seem to be depressed all the time. I'm tired a lot. My hearing is shut. I have a hard time remembering things. I don't know if any of this will get better. I feel very alone even though I have a great family who loves and supports me. Please send e-mails [email protected]

My mom was diagnosed with Ovarian Cancer 11 days ago and I am scared!! I am scared for her and for myself. She has an appointment at Duke university Jan 6, 2009 to find out what stage she is in. From the information that we have now, she shows no cancer in the organs but her stomach keeps filling up with fluid. This is how she discovered that she had a problem. 2 weeks ago, she couldn't bend over due to the bloating in the stomach. She went to the hospital and they took a gallon of fluid from her. They sent the fluid off for testing, and sent her to a liver specialist.

My mom has hepatitis from a blood transfusion when she was in her early 20's so we thought that she was having problems with her liver. The liver specialist said he couldn't help her that she needed to go to an oncologist because she had ovarian cancer and that she has about 3 good months to live. He said it just like there was a cake in the oven. I didn't believe it at first and my moms first reaction was, not to fight. To accept what this doctor had said and be done. This is a woman who has never backed down from anything; very strong headed so I was shocked at her reaction. After she spoke to all 3 kids (including myself) and my dad, something changed her mind and now she is ready for a battle. This is the beginning of our story and with Gods mercy and blessings, I hope to have a happy recovery.

I had been taking care of my mother for 12 years. We had lost my father in 96 and I was primarily her caregiver since he died. She depended on me for everything. I took her on vacation in May and right after we came back we found out she had liver cancer and it was bad. She was 85 and they said the cancer was so bad there was nothing to be done. It was horrible for us to see her in this horrible state. If you have stage IV liver cancer it is horrible and takes you fast. I couldn't hardly bare to see her in the state she was in. She died in August, 3 months after our vacation! One month she is enjoying San Antonio TX and in 3 months later she was dead. I hope someday they can cure liver cancer. Anyway, while I was taking care of her when she was dying, I took a fall. Little did I know that fall was going to cause me to discover something later that I didn't know. My stomach started to bloat really bad after the fall. I was going to go to the Dr. but the Hospice told me my mom was really going to die that day. I cancelled my apointment and my mom did die later on that same day. I then planned my moms funeral the next day and then couldn't take the pain any longer. I went to the ER and they told me I had ovarian cancer. I was put in the hospital immediately and was unable to go to my moms funeral. They drained 6 pounds of fluid from my abdomen and gave me a total hysterectomy. I was sad that my mom died but I was happy I had her for so many good years. I was also happy that I stayed healthy enough to care for her when she needed me most. I am kind of glad that I got sick later so that I could give my mom the care she needed. I just couldn't believe the way everything happened. God made sure I was well for my mom but he also let me know (by my fall) that I needed medical attention too. If I had not had that fall I may still not know that I had a dangerous cancer growing. But the doctors told me that I am at 2c and that it is curable. I am going for my last chemo Dec 31st. They told me it could come back but I feel that God has helped me so far and I don't think he will let me down now. God has also brought so many different people into my life telling me their stories of survival. People have stopped me in places like Walmart to tell me that they are cancer survivors and to hang in there. People can tell right now I have cancer for I am totally bald from chemo. Please keep the faith and dont feel down. There are so many people now that are starting to live with cancer and though it is rough, new treatments come out all the time and are making things better. Never give up hope!!!!

My mother has just been diagnosed the stage 4 ovarian cancer. She has been in and out of the hospital for the last 2 years for various reasons from a heart attach to surgery on her neck to removing a blockage in an artery in her neck. We all attributed her weight loss to all of this. Then it seemed like overnight, she gained 20 lbs. Her doctor prescribed her something for constipation. Her stomach kept getting larger. She looked pregnant with twins. She woke up one morning with chest pains and was rushed to the ER. She was put through all the tests and it showed ovarian cancer. Her ca125 was 700. They drained nearly 30 lbs of fluid from her. The cancer is on the lining of her stomach and spots on her liver. She had her first round of chemo yesterday, with 5 more to go every 3 weeks. Surgery is not an option because of the Paxel and aspirin she is taking for the stint in her heart. Her prognosis is 6 months to 1.5 years if the chemo works. The oncologist said it was a 50/50 chance that the chemo would help. I have an appointment with my OBGYN this week to discuss problems that I am having. I have not had a menstral cycle in several months. Everyone thinks that I am just being paranoid because of the hereditery issues with ovarian cancer. If anyone can give any helpful advice on other treatments for my mother, I would be so grateful. I haven't read any other stories where surgery was not an option. Thanks and God Bless.

Hi, It's taken me a while to find this site with stories, even though I've searched Johns Hopkins before. There are too many stories for me to read right now, but I can remember them to catch up on during the nights when I can't sleep, or want to feel close to other "ovarian cancer buddies."

I am deeply sorry for the two young girls who lost their mothers at an early age from ovarian cancer. I lost my mother as I was celebrating my 13th birthday with my sister for her 10th birthday. And strangely enough, all these years I thought she died of ovarian cancer, but it turns out that's what they initially thought it was--it was sarcoma of the ileum. So, my heart goes out to any of you, especially the very young, who have lost your mother. I truly understand what you're going through and wish I could give you a big hug. I still believe my mother (who would be 76 today) is looking down from heaven, as she always has, and as your mothers must be, too. (My mother died at age 34). So I wasn't surprised to find out I had ovarian cancer, but more surprised to find out that wasn't what she died of. What irony! I discovered it myself, February 2007, and my internist did all the right tests, each one becoming more certain that it was true. We live in a rural area, so I located the nearest Cancer Center of Excellence, which happened to be Johns Hopkins Hospital in Baltimore. It's a 2-hour one way trip, but absolutely worth it. Of course, I had the total hysterectomy, and everything else out. Then the six rounds of chemo. Boy, did I know squat about that! The exhaustion towards the last half was the hardest thing for me. and then I expected recovery to be a cinch--HA! The great thing, of course, is that I've been "no evidence of disease," or, as I tell my famiy and friends, cancer-free, for 15 months. They don't like to know and don't seem to really grasp, except for my husband, that the recurrence rate is really high. Or they toss the idea out of their mind (that's my daughter), or, like my son, am sure I've beaten it. I do believe I'll live to be 85 or 95.

I've spent many months concentrating on vitamins, and am now tired of taking them. My oncologist told me yesterday that the only thing they advise survivors to take is calcium with Vitamin D. I had added fish oil, gingko biloba, biotin, multivitamin, and other things to my repertoire and it was a chore every day to take them all.

I acquired loss of hearing from the chemo. That has still not returned. I may have to get a hearing aid, which depressed me considerably last fall. But I'd like to hear movies and TV again better. Not as I used to. That's another thing I've been accepting. I'll never be my "old" self again. But perhaps that's not a bad thing.

I treasure time with my family more now. I realized that if I were told I only had one year left, I wouldn't want to travel or go live in Europe as I've always said I would do. I would want to spend as much time as possible with my husband, son, and daughter. I made a point this year of traveling to different states to see extended family, and I now am eager to go for walks with my husband (to get that Vitamin D and the exercise), out for coffee or shopping with my daughter, and out for dinner or making dinner for my son.

I still put pressure on myself to be perfect, but am trying to remember that that's an impossibility to begin with and my family already thinks I'm perfect. So, when I want a lazy day, like today, of nothing but reading a great book, drinking tea, and snacking, I'm letting myself do it and trying to let go of the guilt.

Anyway, there is light at the end of the tunnel for those of you going through the initial diagnosis, the surgery, the treatment, the recovery--it does all get better. The nausea, not wanting to eat, trouble with hydration, constipation, insomnia--all disappears. The "late" side effects that come afterwards--for me, neuropathy, joint pain, hearing loss, and weight gain--are all bearable and, in time, become part of you. The joint pain was terrible for months, but now it's gone. I am now finally feeling as if my loved ones' voices and my voice sound normal again, even though I know my hearing loss has changed them. I don't notice it now every time I speak or listen, and that's a good thing. I gained two dress sizes after chemo ended, but my oncologist is happy I've gained weight. She's be more concerned if I lost it. The neuropathy has dissipated some, but not enough.

If anyone wants to write me, my e-mail address is [email protected] Conni

I am a 31 year old african american woman. I was 22 when I got diagnoised with papallary ceris stage 4, a rare type of ovarian cancer. I went through chemo and stopped it on the 4th dose when I was supposed to do 6. Since the cancer didn't kill me I thought the chemo would. I had a total hysterectomy at 22. I felt like I wasn't a woman because I would never bear or have children. 6 years later my grandmother died of the same cancer I had. I have not seen an onocologist since I got diagnosed. I am very afraid of what the reults will be. The scar from the hysterectomy still remains, along with the port scar in my chest. I want to go and get checked to be sure but I'm afraid. This cancer left my body in shambles. Ugly scars, weight gain, and etc... I really had no family support, I went through this alone. I would drive myself to my chemo treatments. And when I couldn't my grandparents would take me. This isn't half of my story so email me please if anyone has a similar story. Thanks

Tammy B

I began my journey in December of 2007. I had a slight pain when I urinate. I threw up four times in a row without some kind of explanation. I was tired but I thought it was because of me being old. I had to urinate but with urgency. At that point I thought I had ovarian cancer; don’t ask me I just had that feeling. Having said all that, I visited my doctor on January 4th. The doctor told me I needed an ultrasound chest x-ray ca-125 which was 250. I was then a candidate for a robotic surgery where a surgeon can see everything in 3D so he could scan all my organs.

On February 7th, I was diagnosed with stage 2b grade 3 ovarian cancer. No abdominal fluid got to my omentum liver or lungs. I was very lucky. I underwent six rounds of chemo, which was four months ago, and my ca-125 is holding at a 9 and I am doing fine. I don’t have to go back to my doctor for another four months. The doctor did say that I will either get it again or not; so some days I live on egg shells. I do carry the brac1 gene so I will have a double mastectomy in two years to prevent breast cancer. I’ve been married for almost 20 years and have 3 children, Nick 18, Andy 14, and Carissa 9. I will also have a granddaughter in about two weeks.

My sister was just diagnosed with stage 1 ovarian cancer and will also do chemo. My other sister died of breast cancer 9 years ago at the age of 45, while my mom died of ovarian cancer 35 years ago when I was only 11 years old.

Remember that old cliche..life begins at 40?

Well, for me my life began at 52, when I met my wonderful husband and moved to England. Life in London was very different from life in NYC, but I adpated. Fast forward 4 years and 40 lbs and I began to feel unwell. I went to my GP and gave my symptoms, frequent unrination, night sweats, a cough that wouldn't go away and my abdomen seemed to be swelling. Without even poking or prodding me, she proclaimed I probably had a bladder infection and if I lost weight, my frequent peeing would more than likely stop. I went back and forth to this doctor for three months and didn't get any better. Now my back started to hurt and that was also attributed to my weight gain. I was worried and I told her I think I have cancer. She smirked and replied, "Where, in your eyelashes?" So I took yet more anitbiotics, went for a chest x-ray (which showed clear) and became more and more tired. My entire abdominal region was so swollen that I looked pregant with twins. I made yet another appointment but to my great luck my original GP wasn't in that day. I saw one of her colleagues. This woman doctor carefully read my notes and noticed my family history of cancer. She listened to my chest and thumped on my abdomen; she gave me a form for a sonogram and some bloodwork. Now most people complain about how slow the NHS is . I had no problem. I waited two days for a sonogram and my bloodwork was done the next day. The results came back. The sonogram showed "something" in my pelvic area. I knew then and there it was cancer. I got an appointment with the local oncology clinic within a week. My onocolgist, a brilliant woman, was kind and compassionate. She explained that my mass was over 16 centimeters wide and she was 99% sure it was malignant. She introduced me to my surgeon, my brilliant Mr. J. He explained that my tumor markers were above 1900 with the normal range between 0-30. He recommended 4-6 rounds of chemo, then if able, debulking surgery. I trusted my team from the start. I was admitted to the hospital and drained of more than 12 liters of fluid) Two weeks later, I had my first round of chemo (carboplatin and taxol), got a bad reaction which kept me in the hospital for two weeks. First time out the gate the tumor markers dropped to 800. Everyone was amazed. I'll tell you this, all the time I battled to defeat my cancer, I was never afraid. I prayed to God and the Lady of Lourdes for my recovery. My surgery went textbook perfect. All visible signs of cancer were taken out. My tumor markers dropped to 17, they are now at 4. I still tire easily and can catch a cold at the drop of a hat but in time this will pass. My oncologist said it is my sense of humor that saves me. I tell that I trust my health team and have faith in my God.

So ladies, when your doctor fobs you off with a diagnosis of bowel trouble, or stomach trouble, or some vauge woman trouble you stand up for your self and demand a blood test that includes the CA125 tumor marker!!!! I don't care if you are 100lbs or a 1000lbs, you make sure your concerns are addressed and not attributed to any thing so tangible as your weight!!

I hope you are all blessed with such a compassionate, brilliant team as I was. Don't forget to pray to the Lady of Lourdes. She helps everyone one.

Love to you all,
Denise

First of all I would like to commend you all for your strength and courage while going through this terrible disease.

I have not been diagnosed at this time but I am seeking advise from any of you on what I should do at this time. I'm 49 and have had abnormal bleeding between periods for probably 15 yrs. and after some testing and going through multiple Dr.'s decided that maybe they were right in suggesting that it was normal. After April this year I didn't have a period for 3 months and then it came again mid-July. A few weeks after my period I started having spotting and at the end of July I started having bloating (looked like I was 5 months) and pain for 2 days. The first day the pain was mild and didn't last long but the day after I ended up in the ER because the pain was worse and the bloating worse also. They did blood work, urinalysis and a CT of abdomen & pelvis and after being there all day the only thing they could tell was I might have a UTI and prescribed antibiotics. I followed up with my Internist 2 days later as suggested by ER and after he reviewed all the test results he said the urine culture was negative and the CT showed hemangioma on liver & kidney which was not uncommon and benign. He then ordered a TVU & CA 125---TVU was normal and CA 125 was 27.1 so he wanted to repeat it in 6 wks. I just had that done 2 days ago and it is now 24.3. I have continued to have sigificant bloating/swelling in my abdomen and I am not able to fit into most of my shorts & pants and I recently had 2 weeks of mid-month bleeding, not just spotting, including a lot of clots. I made an appt. with a Gyno but since I haven't been to one in about 10 yrs. (had Papsmear done by primary doctor every year) I can't get in until Oct. 13th. I feel like my body is telling me something's not right and really want to keep on top of the situation but I'm frustrated that all the tests are normal. PLEASE---anyone who can give me their opinion on what I should do now let me know. I am scared but feel like it's all in my head. Thanks so much~~~~~Charlyn Salts

It was 1998 I was three years old I don't remember much all I really remember was everyone saying "6 months". She was my mom the only one I had. While most kids dreams were to be a vet or teacher she wanted to be a mom. So she had me, just me. Everything about our lives seemed to be prefect I believed in fairy tales then. That was before my life turned around the doctors soon were becoming my family. I was living with my grandma and my Mom was dying. No one told me.

6 Months

That’s what everyone said. I found that out when I was 11. But now at 13 I know. She lived she said she just wanted to see me go to school and…

She did

She wasn't getting worse but better well as much as she could. Over the next 6 years of my life we did EVERYTHING! Camping we even went to disney world she was sick but living me my mom and my dad living together even though she was sick we made the best.

Every time

My mom spent LOSTS of time in the hosptial and I made friends with the nurses and doctors. My mom brightened the room she was the strongest person on earth Every time she went into the hospital I would go into the waiting room and pry, pry that god would make her better and we would be happy again.

The right thing seems wrong

Everything was going down hill after 2004 mom could no longer walk or eat on her own. We both cried a lot my dad would stay up until 4 am cause that’s when she felt good. But then one night it was really bad we took her to the hospital and she could barly talk. I went into the waiting room and I pryed to god not to make her better but to do the right thing.

It was Over

She died the next moring I was 11 she was supposed to live 6 months my mom made it 8 years! I am now 13 and living with my dad we both have some really though times but we both no we have the strongest angle watching over us everyday and sometimes we have to do the right thing

Dedicated to my mom Deb 1966-2005 I love you Mommy

Some of my story was accidentally left out, so here goes:

After returning from Forida at the end of April, I went to my Pcp for a laxative since I had returned bloated and constipated. He gave me a prescription and I tried it for three days. Then I knew there was a more serious problem.

I went back to the doctor and he did a CA 125 test. It was 19,000. My doctor said that one a scale of 1-10, I was a 12.....way off the charts. I had a CT scan and they sent me to remove 5-6 liters of fluid and biopsied the fluid.(At least I took off 12 lbs. Ha!)

Next I was sent to a hematologist/oncologist. He told me I would need chemo, surgery, and more chemo. I chose a gyn/onc/surgeron and went to see him. He agreed with the first doctor. I underwent 4 carbo/taxol treatments, then had a complete hysterectomy removing everything I did not need to live. My hema/onc followed that with 5 more carbo/taxol treatments.

In February of 2008, my CA 125 was 10. We were all elated and I was put on a schedule of seeing one doctor, then I would see the other doctor, then I would skip a month,etc. Anyway, in June the 10 had jumped to 40. This brought a little alarm but was not earthshattering. Unfornately, August first it had jumped to 92 and I was beginning to feel some symptoms.

Therefore my doctors talked and decided it was time for more carbo/taxol (luckily it had been 8 months since my last chemo so they could use it again). For some reason my body seemed to respond to it really well last year. They plan on 3 treatments. If these do not work, they will move on to some of the many other available drugs.

I had my first treatment yesterday, Aug. 15, 2008. I am beginning to feel a little under the weather but do not expect the worst for another 24-48 hours if I respond like I did before.

The above should have gone between being sent to San Angelo and In June.... Thanks, Sherry

Hi, my name is Sherry. I am a retired school teacher of 31 years. I have a terrific husband and also a wonderful daughter. My husband and I live in Brady, TX, a small town with a population of 6000. Our daughter teaches at Texas Wesleyan University in Burleson, TX. I retired at 60 in order to travel with my husband in our RV.

In April of 2007 we took a trip to Disney World. During that trip I started feeling out of sorts but put it off to all the eating out and acting like a kid at Disney World. After returning from Florida at the end of April, I went to my pcp for a laxative since I had returned bloated and constipated. He gave me a prescription and I tried it for three days. Again I felt like it was all caused by too much fun. Then I knew there was a more serious problem when he sent me to a hospital in San Angelo, TX, where I was diagnosed with advanced stage 4 ovca.

My tumor was the size of a baseball, and my CA 125 was 19,000. My doctor said that on a scale of 1-10, I was a 12.....way off the charts. I was very bloated, had to have 5-6 Liters of fluid removed, and was having lots of nausea and tummy aches (at least I took off 12 lbs. Ha!). My onc/hema did 4 carbo/taxol treatments, then my gyn/onc surgeon did a complete hysterectomy and removed all the other parts I did not need to live. No lymph nodes were a problem. Then my onc/hemo did another 5 carbo/taxol treatments…the last being 12/24/07.

In February, 2008, my CA 125 was at 10. We were all elated and I was put on a schedule of seeing one doctor, then I would see the other doctor, then I would skip a month, etc. Anyway, in June it had jumped to 40. This brought a little alarm but was not earth shattering. But now it is 92 and I am beginning to feel some symptoms. Because it had jumped twice, I had another test yesterday, 8/15. I am also feeling bloated and having tummy aches again. Monday, my gyn/onc will do a pelvis exam to see if he can feel anything suspicious. I am feeling a little under the weather but do not expect the worst for another 24-48 hours if I respond like I did before. It is possible that the CA number will be the same or lower, but my onc and I feel that we need to be prepared. Mentally, I am ready for whatever the call turns out to be. I have been blessed with a very supportive husband and daughter. And I know God will take care of me.

For those of you reading this, please do not ever give up hope. Remember, "Blessed is the man who perseveres, for once he has been approved he will receive the Crown of Life which the Lord has promised to those who love Him." Blessings to all of you. Thanks, Sherry

I went on my first overseas trip in May 2005. While travelling, I experienced terrible constipation, tiredness, bloating and swollen legs. I put all this down to the travelling and being overweight. When I came back, I just didn't feel 'right'. My usual doctor was away, so I saw her replacement, who thought I was just severely constipated and refused to refer me for an ultrasound.

Things didn't improve - I eventually saw my usual doctor who gave me a referral. A few days later but before I was due for the US, I felt so bad that I was crying but not sure what was hurting. My husband rushed me off to the ER. I thought it must have been stones in my gall bladder - I had all the symptoms - fat, over forty, fair and family history!

Two hours later, I was told I didn't have stones but I had what appeared to be cancerous tumours throughout my abdomen. My ca125 was 1900. Needless to say, the shock was overwhelming. I wondered how I would tell my 3 daughters and my mum… They couldn't operate because the tumours were so big, so opted for 3 rounds of carbo/taxol to shrink the tumours and then they would operate. I was told it was stage 3C. At the same time, my youngest daughter (one of twins) needed leg and spinal surgery. I couldn't stop looking after her yet, so they gave me another round (4th)of chemo before scheduling the surgery.

The surgery went well, the tumours had responded to the chemo, my ca125 was normal, another 2 rounds of chemo and things were improving for me. Unfortunately, although my daughter's spinal surgery went well they had a ventilating and positioning accident in hospital which caused permanent nerve damage in her leg - terrible for a teenager, or anyone, to experience. The good news is that I had my 3 year anniversary on 14th of July and I am still in remission. Since diagnosis, I have changed to a very healthy diet - no meat, salt, sugar, bad fat, caffeine, alcohol. I eat mainly organic unprocessed food and drink purified water. I also take vitamins and other supplements and drink freshly-squeezed fruit/veggie juices every day. I have lost 25 kg in weight and have felt really good for the last 3 years.

Last year I had a bit of a fright when I developed a lump in my abdomen - it turned out to be an incisional hernia. I had that repaired in August 2007 - my gyn onc surgeon had a look around during the operation and sent tissue samples to the lab - it all came back clear.

I feel such gratitude - first to God for His mercy and also to my husband, children and family and also to my friends for their support and caring. I feel a need to help others but don't know how...I still worry about recurrence but try to make the most of each day and to realize that I must pray for God's will to be done, not my own.

I would like to offer hope and encouragement to others in this situation - don't lose hope in God's mercy.

In Aug. 1998 I had a normal period. 28 days later I had a normal 7-day period. Three days (yes, you've just read "days") after it stopped, I spotted for 3 days and then it stopped. The day it started, I thought, "wow, this is weird" and called immediately for a doctor's appoinment because first thing that came to my mind was CANCER. But by the time I got in to see a doc my body had gone thru spotting twice for 3 days on and 3 days off, since my "regularly scheduled" period for Sept. (I belong to the military so we don't get see specialists right away, so I had to see a GP first -- just like most HMO's.) Doc said ok, "we" will just watch this and put me on BC pills and told me to come back in 3 months. His thought was my body just went whacky and BC pills would fix it. That didn't work. For three months, I bled heavily, with clots. Some small, some large. There was no using tampons, only heavy duty pads, having to change every hour.

At the end of the three months, I dutifully went back to the GP and told him and what was his reply? Well Mrs. S., let's try a different BC and wait some more! Come see me in 3 more months... And being in the military (and that's all the "insurance" I have) that's what I did. I went through this for 9 months. The clots got larger and larger, the bleeding heavier and heavier. In the six month I was calling that health clinic demanding to see other doctors and I got my appointments but no one would refer me to the Gyn clinic. And no, I wasn't having normal periods. I was bleeding for 10 and 15 days at a time, with it stopping for maybe 3-5 days in between. This is no exaggeration. That's why I kept going to the doctor, I thought I might see someone who cared.

Finally, nine months into it, I did get to see a young Captain doctor who was smart enough to realize he had no idea what the problem was and wrote a referral to let me go to see a Gyn doc. I got an appoinment quickly, even got to see a female doc. YAY! She didn't hide anything from me. She told me what she thought it sounded like, which was exactly what I thought, but of course she had to scrape and send samples for testing. She did a biopsy of a cervical polyp - it came back questionable for adenocarcinosis (I think that's right, it's been 9 years now). Because of that a cervical conical biopsy was scheduled. After that she told me she took a large biopsy in a location she rarely cuts into, she didn't know why she took from that location, she just "felt" she should and she also "felt" the section should be larger than normal. (Well I know why she did, the Holy Ghost spoke to her heart and mind to do so.) We had to wait 3 weeks - it was a very long 3 weeks - for the result but it came back positive for cervical cancer. Since I was done having all the children I was going to have I opted for a full hysterectomy (uterus, ovaries, fallopian tubes, cervix of course). So my Gyn Onc did an abdominal Laparoscopy looking for tumors, and didn't see anything, thank goodness and removed lymph nodes from my upper thighs just in case there was cancer there. You see, through all of this my CA 125 NEVER rose above 11 [yes, that's right, it never rose above 11 (eleven)] so there was never a blood test indicating I had cancer.

The hospital I was in is also a teaching hospital so I volunteered to give up my organs for study and I allowed interns to learn from me (like on Grey's Anatomy). On my fifth day hospitalized a young doc came to interview me and slipped up by mentioning something he thought my Gyn Onc had told me. And that was that the Lab had found cancer in both ovaries and both fallopian tubes -- what a shock for me! You see, I went into surgery thinking I simply had Cervical CA. Thank goodness I had donated my organs for study. The Lab was examining frozen sections to ensure they were good for study and found Ovarian CA in each ovary. You should have seen that poor young doctor's face when I told him I had no idea because my doctor had told me no such thing! He was terrified because now he had told me information he knew he had no business telling me. But I didn't tell my doc his name when my Onc doc came in and I reemed him for not telling me I had Ovarian Cancer and Fallopian Cancer. AND he was shocked too, because he said HE didn't know!!! Some hospital huh? When the Lab doesn't notify the doc or the doc doesn't have the wherewithal to go the the lab to check on frozen sections???? So anyhow, my doc went to the Lab and checked, twice, to be certain and yes, there was cancer in both ovaries, but apparently no cancer in the fallopian tubes (that was a mistake) -- but with these other mistakes I wonder if it was true. So, there was ovarian cancer, it was microscopic with no telltale signs which is why my docs had no idea and therefore didn't stage it of course and therefore didn't remove any abdominal lymph nodes (my cervical cancer was stage 1)-- which means I could still develop ovarian cancer in my lifetime. My doc told me the ovarian cancer had "clear cells" in it which, he said, is the most deadly type of cells. He said I needed either radiation or chemo and left it up to me to decide which one after discussing the pros and cons of each. I went with chemo. He used Carboplatin and something else but it's been 9 years now so I don't remember what the other chemical was. My surgery was July 19, 1999 and chemo ran Aug. 1999 to Thanksgiving 1999. My GYN Onc told me I am CURED vs. in remission.

My advice to all women is this: when your body isn't doing what you know it is supposed to be doing, don't ignore it. Be a complainer to your doc. Be a squeaky wheel to your doc. Be a nag to your doc. If he/she won't help you, then find another doctor. So what if it appears he/she and the staff think you are a hypochondriac. YOU KNOW your body is misbehavin', they don't. But do NOT wait. Get on it fast, save your life, like I was able to do for my family…and myself. I'm havin' fun now!

I received the call at 1am, Mom was sick and wanted to go to the ER. She is my best friend and I am an only child so as you can imagine we are extremly close. After arriving they did a CT and discovered Mom had a mass. She has been treated 6mos earlier by another OB/GYN and was told she had fibroids and not to worry. Although they said her uterus was huge they said don't worry. Well, size of the uterus was misdiagnosed and it was actually a tumor the size of a football. They did emergency surgery 3 days later. I was shocked when they told me my Mom had Ovarian cancer and it had spread to the abdominal cavity, lymph nodes, small bowel and colon. After nearly 8 hours of surgery I was faced with the decision to tell my Mom.

I have to admit my outlook was grim. You read so many horror stories. Mom was to start chemo right away however, she got MRSA in the hospital and that set her back 3 months. In the meantime her cancer appeared in her lymph nodes in her neck and upper chest area. She was now officially a very advanced stage IV. Amazingly the cancer did not stop in any of her vital organs it went directly to the neck. Finally we were able to start chemo. The day of Mom's surgery her cancer count was 320…after four treatments it was 60…and after all six treatments it was 6 and there is no signs of any cancer anywhere. We feel very blessed and we live every day to it's fullest. Mom did very well with chemo. Very little nausea..no vomitting or diarhera however, I took care of her very carefully. Actually moving in with her for 4 months. We are now done with chemo and planning on a family vacation this coming week. Mom still tires easily but is back to work full-time, she hasn't missed a little league game this year to see my son play and she is looking forward to her hair being normal so she can get rid of the wigs…ha ha. Just remember anything is possible and cancer doesn’t always have to win.

My story starts in August of 2005.

I had been having irregular periods and felt that my belly was too large. I had always been kind of flabby in that area and thought it was just menopause starting and weight issues.

I was not good at seeing doctors routinely and just put it all out of my mind. I worked as a medical assistant for 30 years before moving to Florida and was always better at giving care than receiving it.

In the beginning of 2006 I stated having stomach discomfort and difficulty breathing on exertion. It finally got bad enough that I could no longer ignore or rationalize it away. I went to the doctor and he ordered a CT scan which showed a very large pelvic mass and fluid in the abdomen. I had the fluid removed so I could breathe. They removed 15 litres!!

I was referred to a GYN oncologist and had surgery the following week. I was very lucky. My tumor was a borderline cancer and required no additional treatment other than CA125 every 6 months to make sure nothing was recurring. I was out of my mind with fear and if it weren't for my husband, friends and good medical care I would not have made it through.

My advise to all women is to listen to your body! If your stomach is getting big for no apparent reason don't ignore it. Facing the facts is so much better than living with fear of the unknown. I thank God everyday that I was spared the worst

Pam K

I went in for a total abdominal hysterectomy with bil. salpingoopherectoy if my ovaries looked bad. I had a transvaginal ultrasound just six weeks prior to my surgery that stated my ovaries were normal.

I had my surgery. My right ovary had a tennis ball size cyst on it. My left was also cystic so my doctor removed them both. She didn't suspect a thing. One week later I went to have my staples removed, and she told me my pathology report had just come back. It stated I had right ovarian cancer. They had staged me at 1a. It had not spread to the outside of the ovary yet. She said it was caught early. She ordered a Ca125 and a CEA. Both came back within normal limits.

One month later I went to see a oncologist-gyn. He sent me for a lung, abdomen, and pelvic CT scan. He also had me repeat lab work including a CA125 and a CEA. The CA125 had dropped from 15.6 to 6.5. My CEA was 1.5.

I couldn't believe what I was reading as I was reading my CT report. I had a mass in my liver and spleen. Later I had a CT guided liver bx. The results showed it was the same tumor as my ovarian cancer. This now made me a stage IV. So in one month I went from the best 1a to the worst stage IV. I have had 4 chemo treatments so far. Also to this day my cancer blood tumor markers are still normal. I have cancer in my liver, spleen, next to my pancreas, and maybe pelvic bone. I'm a perfect example. Don't trust ultrasounds or blood tumor marker tests. A CT scan was the only thing that detected my cancer. I'm 47 years old and really scared.

My Sister had a hysterectomy two years ago, she was just 41 years old then...she had ovarian cysts and they were cancerous...'thats that' I thought, they operated and now she's ok and will stay ok....she warned me to get myself checked out as she suffered terribly with her periods for years before getting medical help....Around Christmas of last year she began complaining of pain again and of gaining weight around her tummy....'dont be silly' I said 'its only a small bit and you could do with it!'...but it grew and grew rapidly and I was shocked at the size of her tummy area a few months ago....she went to the Doctor who finally did bloods and then she was sent to the hospital for scans....just one week ago she was told she has cancer again...this time there are numerous inoperable tumours in her abdominal area and they have given her approx a year to live....I cant get my head around it...and I dont want or intend to give up hope..My sister is a beautiful person who deserves to live and enjoy life...she starts chemo again next week...I ask those of you know what she's going through and what her family are going through to say a prayer....I can only trust and hope that there is some justice left in this world and that a miracle will give her the chance to live for some time yet...God bless all of you who are going through similar....

I am an Australian and live in Brisbane Queensland. For a year or more I had been feeeling very tired, working long hours, sometimes 85 hours per week in a girl's boarding school. The catalyst came when I took a girl to the emergency room at the local hospital and stayed there for hours. The next morning I could not find the girl's personal file which I took with me. My mind had gone blank. My boss wasn't happy and I was threatened with dismissal. I loved my job and for the life of me could not understand why this happened.

So I went to my local GP who said that I was suffering from stress and wanted to put me on an antidepressants. I was tired but never really felt stressed out, so I went to another GP, a lady this time. She acknowledged that there was something very wrong and asked if I had any other symptoms. So I mentioned that I had problems with my bowel, like if I was shopping and felt pain, I had to always run for the nearest bathroom. She sent me to have a virtual colonoscopy, and when the results came back it said I was OK, on reading the results I felt there was something wrong as they mentioned a tubal ligation and I had never had one.

I took it on myself to go back and make inquiries. The doctor took me aside and went through the x-ray then he admitted to me he had made a mistake. I asked him to send another report to my GP and he said yes. A week later no report so I went in to see them and finally a report came back to the GP. This time it was the same saying I was OK, she has had enough and trusting me sent me to had an abdominal scan. It came back saying I had a 15 cm tumor on my left ovary, I was then referred to a gynecologist.

On seeing the gynecologist, he booked me into the hospital for a hysterectomy the following week. I had the hysterectomy and spend the following 7 days in hospital, on release I was told to give the gynecologist a ring a few days later. On ringing the Gynecologist I was told the tumor was malignant and to come in and see him a few days later. I went to see him and was told I had the hysterectomy and debulking and that he felt he had removed all of the cancer. He then sent me to an oncologist and he said I needed to have 6 doses of Taxol and Carboplatin and started the following week, once every 3 weeks.

I was lucked out I guess, my nauses was kept to a minimum with steroids although I mostly ate salads. Lost my hair about the 3rd week and had very bad pains in the legs. So far the blood tests say I am cancer-free although before I was diagnosed, the blood tests also said I was cancer-free. I am still suffering from effects of the chemotherapy, peripheral neuropathy in my hands and feet, acute tiredness, memory problem, my skin keeps breaking out and I have tinnitus.

I had many friends at one stage but when they found out about my cancer they dwindled away, but I have made new ones and they have been wonderful. I don't know what will happen to me in the future although now I live each day as it comes and try not to worry about the future.

My sister had a gallbladder attack in December and also noticed swelling in one leg and frequent urination. She had another attack in January which forced her to go to the doctor. After a cat scan showed gall stones the surgeon scheduled her for laparoscopic surgery the next day to remove her gallbladder. When the surgeon started the surgery her levels kept dropping so they decided they better open her up. She had a tumor on her ovary and fluid in her abdomen. They removed her appendix, gall bladder, ovaries and the remainder of her uterus and performed a colostomy because the tumor had attached to the colon. The surgery was 7-1/2 hours long and they almost lost her twice. She was in intensive care for two weeks. After further testing her cancer was staged at Ic because it didn't appear that it had affected the lymph nodes and cancer was not detected in the fluid. She had her first of six chemo treatments on 4/3. She is very tired and is nauseated at times but other than that has had no side effects. She is having a great deal of problems with the colostomy which the surgeon said can be reversed after the chemo.

About five years ago after a questionable pap smear her OB/GYN did a modified hysterectomy vaginally and although he got most of her uterus he said he could not get to her ovaries, they were hidden. Had she had a full surgical hysterectomy maybe this could have been avoided.

UPDATE:

This is an update to my original posting on 3/12/08 related to my sister's diagnosis and treatment.

I am happy to report that she completed chemo in June and had surgery last week to reverse her colostomy and check for further cancer. They did a wash of her abdomen and checked the fluid and also took some lymph nodes and tested those and everything came back negative so they consider her in remission. The colostomy reversal also went fine and for the first time in nine months she feels great and has no scheduled surgeries or treatments in the near future.

We are of course hoping for the best.

Best of luck to all of you.

My mother was diagnoised with level 3C ovarian cancer in December of 2006. I was out of town and was just utterly blown away at the news. I sat there amid shock and disbelief as my father tried to explain to me what the doctors plan of action was.

My mother had not been to a doctor since I was born twenty-four years before this. She had not had a pap-smear in ages or even a physical. Overall her health was always great. Never one to just sit and do nothing, even at 63 she was probably in most aspects, in better shape than myself.

So this news was completely out of left field. My mother had been having adominal pain for sometime, along with the fact that it was difficult for her to sleep and eat. For sometime she threw these symptoms to the back of her mind and would tell us she would get better, that it was just a virus. After her stomach had swollen to the size of a woman who could have easily been eight months pregnant she went to a local family doctor. The doctor ordered a ct scan and sent her home to wait. Although he had done bloodwork, he had made no mention of cancer or abnormalities. On returning for the ct results she was told she had a mass about the size of a grapefruit on her left ovary. I'll mention now that he was still not noting any abnormalities in her blood nor did he mention the fact that she had a lot of fluid in her abdomen. They made her an appoinment with an ob and a general surgeon to remove the mass. At this time they were still telling her the mass could be benign. When my mother finally got an appointment with the ob it was around January, at this time she was told she did have ovarian cancer and that they planned to do a complete hysterectomy and they would be removing the fluid that had collected in her abdomen. I'll mention now that my mother was told that she had advance cancer that had spread beyond the ovaries. Why she or how it came to be that she never shared that with us I still don't understand. But at any rate we were never told. My four brothers, father and myself were still under the impression that it was still contained to the one ovary and that during surgery it would be removed and all would be downhill from there.

She was scheduled for surgery the morning of Febuary 7, 2007. The surgery was supposed to only last four hours. We were all there awaiting to hear from her doctors in four hours that all was well and she was on the road to recovery. As the nurse called out our last name my father and I headed for the discussion area to speak with her ob. We sat in that room in dead silence for what seemed like forever before he walked in. I knew immediately things weren't as we had hoped. His face told the story of a man who was about to give us the worse news ever. He said that he hated to inform us that the cancer was literally everywhere. That if we could imagine someone turning over a box of oatmeal inside of her then we might get a clearer picture of what he had seen.

The cancer was a level 3c and that they had given her a colostophy bag cause of two small tumors on her colon that they were trying to avoid anything irritating. At this point I was spouting out every question that came to mind and Dr. Dean was very considerate and tried his best to answer every question to the best and fullest of his ability. They were going to give her a mediport under her rib cage that would shoot the chemo directly onto the tumors.

So back to the waiting room we went to tell our family members who were anxiously awaiting our news. Their reaction was much the same as ours; we were all devastated. As we sat there wondering why this had happened and what we were going to tell her thousands of things ran through our minds. We had come to the conclusion that we would avoid telling her the full details in hopes that if we only highlighted the positive she would keep in high spirits and fight this battle harder. Little did we know that she already knew and had chosen to deal with it on her own in hopes of not worrying us. I know that my mother had hidden the details from me cause I was pregnant and already having a hard time with premature labor and the babies' heart rate. I was due to deliver on March 3, but the plan had to be changed cause he was tachycardiac, I would be delivering February 22. I was so worried that she would not be there for this birth. As selfish and childish that I know that is, she had been there for every major event in my life and I would so miss her not being by my side to welcome this blessing. I knew her health was more important and her just being there to see him grow up was more important though so I pushed all that to the side and focused all my attention on her.

Three more hours passed as we awaited news from the general surgeons who would be preforming the colostophy surgery and the internal flushing of the fluid. Our names were called again and this time I chose to wait where I was at and allow my older brother to take my place. They returned after about fourty minutes with huge smiles. I already felt the wait of that bear easing off my back. They reported that Dr. Mckimmie and Dr. Brock had removed all the fluid and most of the cancer that was left. They had high hopes for her prognosis and I was thrilled to hear them say that.

It was a while longer before they allowed us to go in and see her in her room. When we walked in I remember just wanting to crawl into the bed next to her and hold her like she had done so many times for me when I was sick. That wasn't even possible had I actually tried. My mother was hooked to a morphine pump, there was a tube down her throat to suction all the vile out and so many needles and bags of this and that; only the doctors would be able to tell you what it all was. It was at this point that I was just baffled and grieve stricken. I wanted to help but didn't know what in the world I could for her.

By the next morning she was sitting up talking with us the best she could. She sat in a chair next to her bed and I gave her a bath. The next morning she was asking when she could walk and when she could eat. She is a fighter and was determined to go home. My mother spent less than a week in the hospital. At home she was doing great. I volunteered to take care of her in anyway she needed. Along with each and every family member we have. My sister-in-laws cooked and cleaned for her. We all bought things that we thought would make her more comfortable. I suppose the hardest part was taking care of the bag. She was unable to change it by herself at first and I tell you with a honest heart it didn't bother me to do it one bit. It was the least I could do. I wasn't great at it at first but we got the hang of it, with the help of an angel named Charlene who had taken care of her father who had colon cancer when he had his.

On Febuary 21st my mother was scheduled to see Dr.Dillmon, her oncologist, to discuss her chemo options and starting date. I was in the hospital in labor with my son, my husband left and met her, my father, and brothers at the oncologist office. Soon after that the babies heart rate dropped and I was rushed to an emergency c-section. My son was born healthy and in the presence of my wonderful mother who had made it after all. I have two other children but I tell you now that his birth was a precious moment for more reasons than one. My mother calls him her heart, I often time see her just staring at him and I know what she is thinking cause so many times I thought the same thing. We three share that bond and nothing that has or may happen will ever take that from us. Soon my mother started chemo and the treaments were literally trying to kill her. The mediport done just what they said it would do it sent the chemo straight to her tumors were it collected in her stomach and made her deathly ill for weeks. She was hospitalized for days after her second round and at this point she was ready to call it off and give up. Her oncologist decided to go another route and infuse her intravenously. This plan of action worked out well for her. The ca 125 level had come down from the 1200 range to around 140.

After all the rounds were done, her ca 125 level was down to 45. She had the bag taken off and the mediport taken out. While having the bag taken off and getting her colon put back together they discoverd that the cancer wasn't completly gone as they had hoped there was some residual and more chemo would be needed. Right now she has four rounds of chemo in again, she will be finshed in the spring. Today she found out her tumor count is down from 73 to 64, she had a ct scan and still some residual is there but other than that she is in perfect shape and on the road to remission. Its been a long hard battle but not nearly as bad as some people must suffer. We continue to pray that all will be done and over with this one day. As my mother would tell you herself all of this wasn't for nothing; we have met some very sick people along this journey and have been afforded the opportunity to pray for them that not only God heal them if He so chooses, but that He will enter their hearts and lives. That's my mother and so many members of my family's greatest joy, to share with others about Jesus and what he can and has done. I will be praying for all of you and your families. God is still into miracles and he can and will do one for us. I hope to write to you on here one day that my mother is cancer free, but if that day never comes I still know this; God has His loving arms around her and no matter the outcome He was there all the time.

UPDATE 2009

This is an update to a previously posted story of my mother’s battle with OVCA. Since my last post my mother has taken a little turn for the worse. After responding so well to the treatments and her numbers going down, the doctor she was seeing at the time decided she would let her rest for awhile.

During the break her numbers rose again and they chose to use Topotecan to knock the cancer out. Topotecan was not the answer, it made her deathly sick. After two rounds her numbers where steadily rising. My mother continued to have signs and symptoms of a bowel blockage. We would take her to the emergency room where they would tell her the x-ray showed a small bowel obstruction. They would admit her then the regular doctors would come and to say the bowel obstruction was open. This went on for months. Finally in November of 2008, her surgical team and oncologist tell her that her treatments were no longer working and that she had only a short while to live. We didn't take that very well, we were not ready for that. She went home hospice came out and went through all the details of this and that. Anyways, she was still in the fighting frame of mind. Daily she was praying for the answer to her problem.

As she was watching television she had seen a commercial for the Cancer Treatment Centers of America. We called and had all of her records sent to them. December she was set to fly out to see them. My mother and father are both sixty four years old had never been on a plane in their entire lives. I flew with them to Illinois. We saw an ovarian cancer specialist who was an ovarian cancer survivor herself. The hospital was so different from anything we had hoped for. It’s so far advanced in all technologies and treatments. It’s a whole mind, body, and soul treatment. I am so grateful, she decided to go. The doctor informed her that she did in fact have advanced cancer but that they were going to have to put a nephrostomy tube into her kidneys to drain them so that later they could but in a stint. This was performed along with the implantation of a port. She was put on tpn for nutritional supplementation. Things were looking up and she was actually doing a lot better by the time we had returned home. She only got the chance to receive the stint and removal of the tube and one more round of chemo before they found her in our hometown that she had a staph infection from improper cleaning of the port before administration of meds in the local ER. She was put in to the hospital and treated for the infection and blood clots that had formed around her heart as a result from the infection. She would have to wait for six weeks or more before she could do chemo again. Before the infection was completely gone she started throwing up all the time and it was fecal matter. She was admitted into the local hospital again and received a peg tube for decompression. Shortly after the peg was placed she was released to take chemo again. She had one round of carbo and we will return April 23 for more treatments. I hope all of this turns out well. I have full confidence that if anyone can make it she can. My mother is the fighter I hope to one day be. She never gives up and never backs down. Doctors here locally have told her to give up but she continues to strive on and prove them all wrong. It’s not all uphill and it’s not always easy to watch but she's surviving.

I would recommend the cancer treatment centers to anyone. At the very least, research and find a cancer specialist in your area who you can trust. It’s a sad world that we live in that doctors will take your money and allow you to die while they do so. Some things doctors can't fix other things they can. I have left a lot of what we have been through with her oncologist out of the story. It’s been bad, no one should have to go through what she did with a doctor but I feel that telling that right now is inappropriate because God is seeing to her needs anyway. That’s a blessing that I thank Him for continually. However, the cancer treatment centers are a very good place to be if you have cancer. We have learned so much from them in just short amount of time and I am overly thrilled with their kindness and determination to cure cancer for everyone. One last plea, let’s get the word out there about ovarian cancer. There are woman who suffer this diagnoses somewhere every day. We need to push trials and clinical and research for detection and doctors have got to take the symptoms that woman have more seriously. It could ultimately save someone’s life. I am glad that all the breast cancer research has gone so well and that so much is being done to advance detection and treatment but we need to be able to say the same for OVCA. Remember we are the fingers that bind together to form that fist that will begin to beat cancer. Donate, advocate, and most importantly share what you know with woman in your life. Information is knowledge and knowledge is power. OVCA may whisper but we can still hear it...fight!

UPDATE 2010

Update since last time. My mother has been battling cancer since 2007. Since the last post she has tried several diffrent types of chemo at the CTCA. They now know that she is resistant to all but two types of chemo. As well she has had to undergo surgery to have catheters placed in both her lungs to drain fluid, the cancer has spread to there causing pleural effusions. Currently she is undergoing treatments of Avastin which to my understanding is a clinical trial for ovarian cancer but was intended for lung cancer. I truly hope this will be her cure. We can only put this into gods hands and wait for his will to be done.Sometimes I find myself wondering why anyone must suffer as much as she has, but in the end we have had longer with her than some people are afforded. I can only pray that each and everyone of you who have been touched by this or any type of cancer will find the cure. One day I hope that cancer is as treatable as your common cold. With all the research and trials maybe we are well on our way to that being a reality. My prayers and well wishes are with you all. Hang in there!

My mother, at the age of 61 was diagnosed with Stage 4 Ovarian Cancer on 4/25/06. It was one of the saddest days of my life. It was just one month short of my parents 40th wedding anniversary and instead of making plans for their party, our family started preparing ourselves for intensive chemo treatments my mother would receive. My mother had two surgeries in less than a year in order to remove as much cancer as they could. In a matter of 3 months my mother went from 150 pounds to 90 pounds and no hair. My mother is diabetic and proper nutrition was and still is a challenge for her. Through it all my mother has a positive outlook on life and rarely spent days in bed. She continued with her work in the garden and feeding her precious birds. My father was also sick and even through her treatments she took care of him too. My mother often said "This disease is not going to run my life". It's been a year and 10 months since her diagnosis, she has gained some of her weight and her hair has grown back. People often comment how healthy she looks. Today, she continues to receive weekly chemo through a pill, but unfortunately my father passed away on 1/22/08 from a massive stroke and my mother's CA-125 level has recently risen to 180. My mother is determined to fight for her life and is currenlty exploring alternative medications. My mother said she had a dream of my father the other night and he told her "This disease will only make you stronger, and you must tell more people about it". My mother is asking all of you to share her strength and knowledge of the disease to other people in hopes of one day finding a cure for our daughters, mothers, sisters, aunts, grandmothers and friends. Glod Bless all of you!

My name is Debbie Pettes. I was diagnosed with stage IV ovarian cancer undifferentiated on July 18, 2007. I had a total abdominal hysterectomy on July 11, 2007. Cancer was not on my mind or in my thoughts. When my (gyn) doctor invited me into his office for consultation, nothing in my wildest dreams prepared me for his referral to an oncologist. Even when I went to the oncologist I still did not know for sure that I had cancer. I was told that I had stage I ovarian cancer by my gyn. When visiting the oncologist he found a lump on my groin and diagnosed me with stage IV ovarian cancer. We discussed treatment and 2 months later I started treatment, a carbo platin based chemo.

I finished my 6th cycle of chemotherapy on January 17, 2007. At this point, I do not know what is going on. I recently had a CAT scan to determine if I am in remission or not. My doctor wants me to get involved in a clinical trail. I do not know enough about this trail, but signed the consent forms. I will need to talk with someone about this before I go forward with this treatment.

I am seeking out a second opinion and am waiting to hear from this doctor. My records were sent to his office in Arizona. Both doctors will have a phone consultation and then decide on what is next in my fight against cancer. I am patiently waiting to hear from them.

I am praying for a healing. Sometimes I must ask God to increase my faith and hope. I want to live a long and productive life. I don't want to count on the literature that I have been reading. I don't want to accept that I may have but a few years if best to live. I work at keeping faith in God. This is hard, but It is all I have.

I am single and often feel alone. I do have friends that offer their support, and I am glad for them. I am keeping hope alive. I hope you do too. I want to thank all of you who send in your stories of hope.Thank you for your support!

Debbie

I was diagnosed with breast cancer with mets in 1991, had a modified radical mastectomy as well as chemo and radiation. A single mother at the time I had a hard time focusing on my disease but was cured anyway, my youngest child was fifteen. I was closely monitored for breast cancer and was getting yearly endometrial biopsies due to thickening caused by my use of Tamoxifin. In 2005 I had extreme abdominal pain after doing yardwork (wheelbarrow with cinderblocks) and thought I had a hernia. A CT showed cancer and I had Sub Total Abd Hyst/BSO/Omentectomy with huge number of cancer cells in the washings.

I was cancer free for 18months. post chemo with Carbo/Taxol. My Ca125 started climbimg in May 2007, but CT was clear. By August 2007 a tumor growing on the dome of my liver penetrating my diaphragm was visualized. I am not a surgical candidate for this recurrence. I live in a small town and chose to go to a University Med Center for treatment. This and other factors delayed my treatment so that I am just starting on my first chemo drug Doxil Feb.8 2008.

Hello. My name is Johna and I'm 20 years old.

In July of 2007, I started having these really bad stomach pains in both sides in the lower half of my stomach. I blamed this on the fact of when I went to Iraq, I ate native food, which you're not supposed to do (I currently serve in the Marine Corps). When I went to the ER they hospitalized me and told me that I had Salpingitis. They gave me meds and told me that everything was going to be good now. Nope, not so much.

Between the end of August and now, I have had over 30 UTI's and have been in constant pain (that stabbing pain that doubles you over and you can't move!). So, finally i got fed up and asked to go to the ob/gyn. He does some tests and is alarmed because of my pains, all of the uti's that i've had and the fact of when he moved my cervix and did the PAP smear, I was in horrific pain.

I found out today that my pap smear was abnormal and that I have low-grade s.i.l., which i have been told, is the beginning form of cervical cancer. I have a year for it to "heal itself" before they have to do treatments on me. I'm just wondering if these severe stomach pains that I've been in isn't because of this and because the navy docs never did any tests on me, it never showed up. If anybody could please give me some info on S.I.L's or anything like that, please do.

Semper Fi,
Johna

My name is Joan Marie Burgess. In August 2002 when I was 35 years old I was diagnosed with stage 1C ovarian cancer. I was told it was an endometriod adenocarcinoma. In the following weeks I spent hours Googling “endometroid adenocarcinoma ovarian cancer” trying to understand what it was and how this would impact my life. Google didn’t come close to having the answers.

The spring and summer of 2002 I was sick with stomach upset almost daily and I had gained more than 20 lbs. I’d been back and forth to the doctor only to be told “loose weight, exercise, take Mylanta, and change your diet”. I reluctantly accepted that advice and continued to suffer.

In early August I went camping on the Outer Banks of NC. The first evening there I thought my camping skills were rusty and I had pitched my tent in a bad spot. When I lay down for the night I felt lumps under my belly regardless of where I moved my sleeping bag. I was feeling the ovarian tumor. That is probably when the tumor ruptured.

The drive home to Maryland was horrendous. I thought we’d eaten bad seafood the evening before heading home. I was sick and forced to stop every hour or so to vomit on the roadside. When I got home I felt some better but was running back and forth to the bathroom to urinate. I now attributed my symptoms on the drive home to a bladder or urinary tract infection.

Rather than wait for an appointment with my family doctor the following week, I took myself to the urgent care clinic for my suspected urinary infection. They diagnosed me with appendicitis and sent me to the emergency room. In the ER I was given a CT scan, a pelvic exam and instructions to see my gynecologist for an ovarian cyst.

A week passed before my gynecologist had an opening to see me. When he did he immediately sent me to the hospital and performed a right side oophorectomy that evening. It wasn’t until my follow-up appointment to remove the surgical staples that he broke the news that my pathology report confirmed cancer. I was so clueless I didn’t even know that they were going to send the “cyst” out to be reviewed for pathology.

My gynecologist sent me to a gynecological oncologist for follow-up. The gyn/onc performed an exploratory laparotomy for the purpose of staging. He confirmed the original diagnoses and staging. A hysterectomy was not performed at that time because of my age.

I was counseled that the chance of reoccurrence with my diagnoses was 50/50. Chemotherapy would not improve the odds of reoccurrence. Well, heck, I choose to skip chemo. Wouldn’t you if it wasn’t going to improve your odds?

The next few years were filled with peaks and valleys of calm and anxiety; constantly waiting for the other shoe to drop, questioning my decision about having chemo. You can Google all kinds of information about the pathology and treatment of cancer but there is not much regarding the emotional side of cancer. I heard a psychiatrist on a radio talk show once explaining that many people who survive a traumatic illness suffer PTSD. It certainly explains the anxiety attacks.

In June 2007 during my routine six month check-up I was diagnosed with endometrial cancer and had a subsequent complete hysterectomy. The staging was confirmed at 1B; another early catch. Hooray!

By now I had had many cancer conversations with family members and discovered that more than one member of my father’s extended family had cancer, predominantly colon cancer. I shared this information with my current gyn/onc and he referred me for genetic counseling.

I have just begun the genetic counseling process. To uncover the family medical history and complete the preliminary questionnaire I made many, many phone calls and had long over due conversations with aunts, uncles, great-aunts and uncles, cousins, and once or twice-removed cousins. I wish my father’s very large extended family had kept in closer contact. They are wonderful funny, loving people who have all suffered too much loss from cancer.

The genetic team suspects my family has HNPCC. When I learn the results of the genetic testing in the spring of 2008 I will share them with my extended family. Starting with my generation we will be proactive about our healthcare and no one else will be lost to cancer.

I no longer have bouts of anxiety. No more bad dreams either. Being proactive about my healthcare did the trick. I’m doing something about my cancer risks and the cancer risks of my family. I am no longer a victim. I am a survivor.

Peace and Prayers,
Joan Marie a.k.a. jbx

PART II

Since I first posted my story in Jan 2008 I have been confirmed with HNPCC. I remain healthy, NED. In early 2009 during my annual screening following the HNPCC recommendations I was diagnosed with Barrett's Esophagus. Add something else to the list of six month check-ups!

To recap: I was diagnosed with ovarian cancer stage 1C in August 2002 when I was 35 years old. I had a right side oophorectomy. In August 2007 I was diagnosed with endometrial cancer stage 1B and had a total hysterectomy. Because I was lucky enough to be stage 1 both times I did not have chemo.

In July 2009 my father was diagnosed with brain cancer. I shared this information with my genetic counselor. There is a rare variation of HNPCC that indicates a risk for brain cancer in addition to the laundry list that comes with HNPCC.

My father's uncle also had brain cancer. It is likely our family has this variation. I chose not to be tested to confirm the diagnosis since there is no early screening for brain cancer. Why waste the time and the money?

I can't stress enough how important it is to know your family medical history. Knowing your risks and being screened for early detection is key to long term survival. Share your story with your family and friends.

I continue to pray for the ladies on the ovarian cancer chat group. When I needed a virtual hug or some hand holding you have always been there. Being able to talk to someone who has walked in my shoes has been a blessing. Peace and Prayers - jbx a.k.a. Joan Marie

On January 2, 2008 my grandmother was rushed to the emergency department after passing large amounts of blood from her rectum. She underwent numerous tests, and after they aspirated fluid from her abdomen the test came back.. cancer. But not just any cancer...ovarian cancer! This, of course, came as a shock to us all, because roughly thirty years ago my grandmother had a total hysterectomy. Due to all of the extra fluid on her abdomen and chest caused by the massive tumors, the decision was made to do emergency surgery to remove to two large masses attached to her intestines.

Unfortunately, the prognosis is not good. The cancer is stage 4 and has metastasized throughout her abdomen and into her chest. According to the doctor, it appears that the tumors have been growing undetected for roughly three years. How did this happen? How can you detect something when you don't even know you should be looking for it? The only explanation the doctor can give is that a few ovarian cells must have split off prior to or during the hysterectomy. What are the odds? How do you check for cancer in an organ that you aren't supposed to have?

She survived the surgery like a real trooper. Afterall, she raised six kids and multiple grandchildren, so she refused to allow surgery to get her down. My grandma seemed to be doing well, so the decision was made to get her out of bed. Bad idea. Since she had had intestinal surgery, the doctors decided not to give her any anticoagulants. Well within minutes of getting her out of bed, multiple blood clots released and travelled to her lungs. This was her ticket to ICU where she spent nearly a week. My grandmother is still in the hospital today.

She still has to make the decision whether or not to take chemotherapy. Without it, she doesn't have much time. With it she might have more time. Yet, I wonder, what kind of quality of life will she have with the chemo and it's side effects? With her age and her terminal diagnosis what is best for her?

I am a nurse in Tennessee, and I know that we are all facing a long, devastating road ahead. Even though I am in the medical field, I feel that her case is out of the doctor's hands. It's too far gone. I feel that our only hope is to put it in God's hands and pray for her to have peace, no matter what.. if any treatment she chooses.

I guess the point of me sharing this story is to let women know that just because you don't have an ovary doesn't mean that you can't have ovarian cancer. I recommend all women to be screened for this devastating cancer. For anyone facing this disease, whether you are the patient or someone close to the patient. I offer you my prayers and best wishes!

My mom is the best...the best mother, wife, daughter, sister, friend. In hindsight, she had most of the symptoms of ovarian cancer for several months. The only symptom she did not have was the bloating, possibly because she was on a no-salt diet with my dad. During this time, she was diagnosed with digestive tract issues. It wasn't until her gastro doctor insisted that she have exploratory surgery that she finally consented. This was October 16, 2006. Mom and Dad had to cancel a cruise with their high school classmates to have the surgery. Mom had never been sick and the prospect of surgery scared her. We all were with her at the hospital the day of her surgery never expecting to hear the words "ovarian cancer". Her surgery was taking longer than we expected. When the surgeon came out halfway through the surgery and met us in a consult room, the world as we knew it changed ... forever.

Mom's body was debulked of the tumor but it had wrapped itself around her colon and had spread along her colon to the degree that her entire colon had to be removed. She is now living with an ileostomy.

Mom's first round of chemo was the carboplatin/taxol. It seemed to work but the effect was short-lived. She started another round of chemo in Sep 2007 with doxil. The doxil did nothing to help her. Her CA-125 counts never went down while taking it. In Nov 2007 Mom had to be hospitalized with severe abdominal pain. Her oncologist had dismissed it as acid reflex (don't get me started on this!!!!????!!!!). The cancer had spread while she was on doxil.

Now she is in her third round of chemo with topotecan. She has tremendous bloating in her abdomen and now has to puree all of the food she eats. She eats very little and is very weak. She is still fighting but her courage and strength are waning.

My concern now is her depression and her denial of it. She doesn't leave the house much because of the gas in her abdomen and the uncontrollable effects of it, i.e. burping and passing gas through her ileostomy as well as the very loud gurgling of her stomach and small intestine.

It is hard to watch someone you love so much suffer.

My Mother had no direct abdominal symptoms when diagnosed with ovarian cancer, she had been having respiratory difficulty, which had been happening on and off for a couple of years. She had been diagnosed with asthma and severe allergies. When her breathing became really difficult she went to her pulmonologist who changed her medications & sent her home, that afternoon she went to the emergency room and that is when her world and everyone who loved her, world's changed. She had cancer cells in the lining of her lungs which had spread from her abdomen, primarily her ovaries. She had stage IV ovarian cancer. This is a very insidious disease and crept up on this very healthy & outgoing person. After that hospitalization it was rounds of chemo, surgery, and rounds of chemo. Unfortunately nothing could stop the spread of the cancer. She put a courageous battle, but sadly lost that battle on September 3, 2007. Like others have said before, know your body and be your own advocate, if you think something is wrong and don't get the answer that seems right, try another doctor and another doctor.

Hopefully in the future we find a way to diagnose this earlier and see more remissions and cures with this disease.

Colleen Bonfiglio

UPDATE

One of the reasons my mother was diagnosed so late was not because of a misdiagnosis as my sister suggested in a previous paragraph but because my mother, as well as other women, refuse to recognize when they are ill or pretend that everything is ok. My mother was like a lot of women in her age group and ethnic background- ignorant and loathing of her own body and her physical symptoms- because a lot of women don't even know when to tell their doctor there is something wrong "down there". Women spend more time picking hair color at a salon or trying on clothes than they do caring about the inside of their bodies. Women dont think twice to complain about a bad haircut or below average meal in a restaurant and then act like idiots when they go to the doctor! A man wouldnt think twice if his penis didnt feel right to get to the bottom of his problem but most women consider being passive a feminine response to their problems. And in the case of my mother she was not completely honest with her physician--she never told him of being in bed for entire weekends in abdominal pain- nor were the people in her life honest with her. Her own girlfriends and sisters were in denial of her physical condition years before her diagnosis- in fact my mother had secretly taken laxatives and duiretics to hide her abdominal swelling and it was her own grandaughter and myself who urged her to get a complete pelvic scan a year and half before her diagnosis--a test that could have saved her life. When women start being honest with each other about their bodies and honest with themselves- and stop trying to be supermodels and start paying attention to the inside-- then they can no longer blame cancer for their problems. We injest pollution and garbage everyday in our foods, hair products, furniture, cosmetics, car exhausts, etc and should not be suprised that we are all dying like this and yet every woman on this list seemed shocked? What is shocking is that women willingly allow other people to tell them what is happening between their own legs and not using the heart and brain God gave them to take care of themselves and their daughters so we know whats happening in our own bodies. All women need to stop acting stupid when it comes to their health and get these tests every year and teach our daughters how to take care of their own bodies.

My mom was diagnosed with ovarian cancer on September 17, 2007 after going to the hospital with severe abdominal pain. We were told by her physician that her condition was serious and that we should consider treatment at a different facility. During her stay in the “Community Hospital” they over medicated my mom on the first day and she refused any type of pain medication until we got her into Sloan Kettering on September 24, 2007. My mom had an extremely high tolerance for pain she had 7 kids without any type of pain medication. She was always afraid of being over medicated and not lucid. I believe she was in incredible pain while lying in the bed at the “Community Hospital”. I want people to know that it is so important to be at a facility whose sole purpose is treatment of cancer patients. After arriving at Sloan Kettering we felt a glimmer of hope that she would be with us for a few years at the very least. On September 25, 2007 we were told that her cancer was inoperable at this time and that chemotherapy was her best bet. My mom was a slender woman except for her mid-section which she blamed on having so many kids and we believed her. My sisters and I don’t believe she knew how sick she was but we do believe she ignored some major signs that something was happening. I believe that you can will your mind to do certain things and my mom wanted to see her baby get married in July 2007. After a few days at Sloan her condition seemed to improve and then just like that she was declining rapidly. She was never alone and time seemed to be moving slowly; I never knew what day it was I just wanted to be there. We all did. On October 15, 2007 we received the news that she would not be able to handle any type of chemo treatment and that she could go home or to a hospice. She came home on October 20, 2007 and amazingly we were able to take care of her. All our lives were on hold nothing seemed to matter except to be with her and comfort her to the best of our abilities. On the night she died her children, grandchildren, her sister and my dad were at the house. The grandchildren she adored came in to see her; they loved her so much. My mom died on October 25, 2007 at home with her family. Thirty-nine days (39) and she was gone. My husband described it so well (your driving in a snow storm and you’ve hit some ice your car is skidding in slow motion and you know it’s going to crash you just don’t know when). I still can’t believe it and I'm writing because today is her birthday, she would have been 69 years old. My mom did go to regular checkups with all kinds of doctors except she had not gone for a gynecologist visit since 1977.

My mother has always been overweight. She has been on and off of diets for years. On my 30th birthday she had been on one of her diets and lost almost 60lbs. She was feeling so good about herself. Almost too good. Like the world just knows how to knock you off of your high horse. She started complaining later that month that her stomach was bothering her. Low and behold the doctors found nothing. Something I thought was wrong as it wasnt from the diet. My mother went back again to a different doctor and was diagnosed with Stage IV ovarian cancer. She was scheduled for surgery a few weeks later. The initial surgery didn't go well. They decided to not perform the surgery because the cancer had spread aggresively to her arms, her lymph nodes. Once the surgery was performed , we were told that they got some of the tumor but not all of it. So here we are back at chemo, which doesn't seem to be doing a damn thing but making my mother tired and old. She was once very strong and determined to beat this, but I see her hope dwindling every day. I just wanted to know where to get information on clinical trials. I mean phone number, names and addresses. I undertand that there is some sort of vaccine for stage III and IV cancer patients that has been very successful. Any information you can provide me would be so much appreciated in this hard time for my mother and my family. God bless you.

My wife Anita initially diagnosed a case of ovarian cyst and further investigation clarified it ovarian tumor in Sep 2005. She was operated in Oct 2005 and her left ovary, uterus and fallopian tubes were removed (BSO/TAH) and then declared a case of CA Rt Ovary. First six cycles of chemotherapy shown a lot of improvement. But it re-occurred after three months. Again six cycles of chemotherapy were administered and transplantation of chemo pot was also done as the nerves of my wife grew weaker. This time again lot of improvement seen. But the decease re-appeared again and this time with metastasis stage. Doctors again recommeded six cycles of chemotherapy. First 12 cycles of chemotherapy were tolerated by her well and thereafter she suffered lot post chemotherapy problems like sever body pain, vomiting, fever, loose motion etc.

However, this bold lady faced all the troubles with great courage and bravery. She died after two days of 18th cycle of chemotherapy. One day before her death, two very big boils with untolerable sever pain appear on her buttock and one boil appeared on her forehead a couple of hours before she died.

I appreciate the way she fought the disease for almost two years. Despite knowing the fact of her end, she always motivated the inmates while in hospital.

Being a 35 year old mom of two boys is wonderful considering there is always something that has to be done. Throughout my life I never thought that being a mom was hard but sometimes it is a struggle and also a test that God gives you. It all started with the word stress. Yes that word stress that can either make you tired or just overworked and I fell in that category. To my surprise, on July 27, 2007 I ended up going to emergency room in Bellvue Hospital where they detected a pelvic organ prolapse in which my muscles dropped severely. At this time I never felt symptoms but one day when I was taking a shower, I saw my cervix and boy was I nervous. So I ended up visiting the hospital until Sept 19, 2007 in which they detected in my cat scan an ovarian mass/ovarian neoplasm term: benign tumor. I was scheduled on Sept. 19 for operation and I had my right ovary, appendix, and uterus removed. Procedure was complete, no complications at all . At this moment I will not have menstrual and I was told to leave one ovary for estrogen because of my age. Menopause would have been severe to my body and mind. So now I kind of irritated a little, moody and sometimes feeling down. I am coping with this but it is difficult for me. I cry at night and sometimes think that why me????? So for all you young women that are 35 and older please check yourselves. Don't let cysts get in the way of your health and be stress-free the way I am today.............to be continued on a later note..... P.S. I looked like I was 6 months pregnant and now I loss a lot weight because of the tumor.. It is out for good.

It started in November 1999; my mom who was 44 at the time had abdominal pain and bloating. Her GYN doctor told her that her CA-125 was also up so she had to go to Loma Linda University in Loma Linda, California. There the GYN Oncologist said she had OVCA and had to have a hysterectomy immediately. Once she had the surgery she had 6 months of chemo to "kill any remaining cells". They also told her that they had "got it all".

In June 2000 mom was all done with the chemo and started having horrible back pain (she contributed this to holding my 4-year-old son at a recent fair). Her pcp (after 3 months of still having the pains) decided since she wasn’t better to have a CT scan of her whole body due to her previous dx. My second son was one month old when mom and dad came to my house and told me to sit down. They told me the results of the CT scan, said the OVCA had spread throughout the whole body and was now in the bones (several of them). My mom did chemo and radiation for the next 9 months but the doctors finally said on May 1st 2001 when she was 46 and my first son’s 5th birthday they would no longer do the chemo. It was doing no good. So we called in hospice which was very nice and helpful and then on May 28th, 2001 at 11:45am my mom took her last breaths. Often mom would say "I should have fought harder" but I believe it was too far gone. I had to do the hardest thing I ever had to do in my 26 years of living, put my two fingers on mom’s neck to see if her heart was still beating; it was then that I felt it slipped slowly away. You see my mom had not gone to the GYN doctor for her yearly check up in about 12 years, she said "it hurt to have a pap smear", well mom it hurt a lot worse to DIE. PLEASE, PLEASE listen to your body and go for early check ups. Also if a doctor ever looks at you and tells you "you are too young to have cancer" change doctors!!!!

I am 61 years old and I have Well-Differentiated, (which I have learned means it is a slow growing cancer at this point in time). Primary Peritoneal Cancer, Stage 3C. This cancer is basically the same as Ovarian and it is treated the same way. I was diagnosed after exploratory surgery on April, '06. I had the hysto of everything except cervix and extensive debulking. I went through 6 cycles of Carbo/Taxol.

I have been in "partial remission" since August, '06. I say partial because my CA-125 has been steadily climbing up from 12 after chemo, to 43 at last doctor appt. Each CT shows "slight increases in areas of suspicion". I have never heard the report of NED.

I don't want to wait for the CA-125 to get high enough to alarm my doctors and stimulate them into finally deciding to do something! I told them I needed to be doing something proactive! I needed to being doing something right now! I have been told I can start taking Tamoxifen.

This drug is now starting to be used for OVCA/PPC. I must say, the side affects and serious risks listed on the drug sheet is scary! I would love to hear from anyone who has used Tamoxifen or has been advised to use it. Please, I need some help and some hope!

To end my story, I want to say to all women everywhere, "Listen" to your body. Do not ignore aches and pains, bloating, unexplained weight gain, gas, inability to eat much at a time, going to the bathroom constantly, and low backaches. Go to your obgyn and ask, demand! the tests that can rule in or rule out cancer. I ignored what my body was saying, and now I am very, very sorry I didn't "Listen" and do something much sooner! Thank you for "listening to me" Blessings to all. Trish Holmes

I started out as a GYN nightmare! History of severe endometriosis, laparotomy and rt oophorectomy for a ruptured endometrioma, infertility, 2 miscarriages - you name it, I had it!

On a routine Gyn exam Sept 2006, having no symptoms but some abdominal bloating, my GYN decided to do a pelvic ultrasound because it had been 2 year since the last one. It showed 3 cysts, 2 lime size cysts on right side and a lemon size cyst on the left. Neither she nor the GYN Oncologist I saw thought it was cancer but I was scheduled for a hysterectomy Oct.18, 2006.

Well, I woke up from surgery to hear the news - it was cancer in all 3 masses. They did all the debalking, removed the omentum, appendix, removed lymph nodes and took several biopsies. My final pathology showed a Stage 1-C, which I am thankful for being caught so early - thanks to my GYN!

As a precaution, I started chemo (taxol & carboplatin) in November and finished March 2007 - 6 cycles total. Tolerated chemo went pretty well, after the 3rd cycle, I was given Emend which was a wonder drug for the nausea and vomiting.

I knew my hair would fall out, so I shaved my head prior to my 1st treatment because it made me feel like I was more in control! I felt great, had gotten all my energy back, was doing wonderful UNTIL...

This past August was when I had an evening of vomiting and the most excruciating abdominal pain ever. It turned out to be an intestinal blockage that I needed surgery for. Luckily, it was NOT CANCER but what's called Meckel's diverticulum. This perforated and needed to be removed. While they had me open, they did washings for cells and found NO cancer cells anywhere. It was unfortunate this happened so soon but at least they were able to inspect the abdomen again and I was clear. So now, I am healing again and my energy is coming back.

I have had severe hot flashes/night sweats since menopause at age 46. I am now 53 and still sweating and not sleeping. Before my cancer was diagnosed, I tried Effexor (an antidepressant that helps with hot flashes). This worked for awhile but no longer does, so I am off it. I also took a low dose of PremPro for 2 years and in my mind, I wonder if this contributed to my cancer. My sweats are terrible and I get no sleep anymore. My Oncologist wants me to take Premarin 0.625mg and also use the Premarin vaginal creme. He feels this is very safe in women who have already had ovarian cancer and have no uterus. I am reluctant to fill the script but I have to do something to get relief.

QUESTION TO ALL OVARIAN CANCER SISTERS:
After having a diagnosis of ovarian cancer - does anyone take Premarin - if so, how is it working for you? If anyone has any advice or suggestions, I would sure appreciate it!

Thanks,
Joanne from NC

UPDATE: 2012

I just wanted to share that I am now 5 years cancer free from stage 1-C ovarian cancer!!! I feel so blessed! Please see my previous story - look for other entry from Joanne from NC. There IS hope!!

I met my wife in key west. At the age of 16, we went to high school together, and have been together and been married for 24 years. I have never be so proud of her for her will to live. She found out that she had ovarin cancer in 2005 right after we came off of a cruise. But with the help of friends and famil, Darlene is still here with us. She went in remission once but it came back, and now she has to fight on to contiue to live. With the love of God and family, you can live to see another day and that's what we all live for. I have a saying that "between 1 inch and 1 yard there is alot of living to do, don't waste an inch being mad at life."

My mom had felt a small lump in her abdomen. Went to see her regular MD and suggested a CAT scan. The CAT scan showed Ovarian Cancer, doctor's suggestion was to go to New York University. My mom could not believe her ears, she had a hysterectomy 30 years ago. Need less to say they left one ovary. New York University was not a good experience for us. Her doctor (Dr. Noah Goldman) who is no longer there, told her she needed surgery for debaulking immediately. That very next week she was scheduled for surgery. After total preparation and there just waiting for my mom to go into the operating room. Dr. Goldman came into the room where we were waiting and told us, sorry we cannot operate today. I never actually read the CAT scan report. She was stage IV cancer and it has spread to her liver. We were besides ourselves. At that point he told us to get a colonoscopy since she was all ready prepped for surgery. So she did, she came out of the operating room with severe pain and stayed in the hospital for several days. At that point, she never had a bowel movement again. They seem to have pushed the tumors up so far, it was unimaginable. My mom suffered terribly. A few weeks later that started her chemo (one treatment for her and never left the hospital again.) From the treatment she developed blood clots on her lungs. Three weeks in NYU and then three weeks in hospice. That was her horrifying journey. A terrible battle with a terrible doctor. Dr. Noah Goldman is now practicing at Beth Isreal in Manhattan. Advice to all keep away, he is the most uncaring doctor I have ever met. May my mom rest in peace, I love her and miss her with all my heart.

I was diagnosed with Ovarian Cancer in October, 2005 after having a bladder test, previous to a hysterectomy. I mention to my doctor that my stomach seemed to be getting larger. He said, Oh, "I don't like that. It may be cancer". What a shock that was! It took until November to see a surgeon after having a delayed appointments. Then the surgeon went on vacation. When he came back, I called and called for an appointment and was finally given one the next day. When he saw me, he said that I'd be in surgery the next day. I was in the hospital for 8 days because of fluid on my lungs. I received my first chemo in the hospital and 5 more after that. By July my count was going up and in October finally had more chemo. It was less than a year and it had come back. So far I've had 4 kinds of chemo and 23 treatments. Now my cancer is growing and I cannot have any more chemo. The doctor suggested Hospice and I am enrolled in it. I feel okay these days, except for a few other unrelated ailments, and am finally getting over the chemo. It has really hurt my memory, which doesn't seem to be improving. I am going on day to day with the help of my family and friends and antidepressants. My prognosis is a few months to a year. I will keep going because I'm not ready to leave this earth any time soon. My grandboys are still young and I want to see them grow.

I was finally diagnosed with ovarian cancer in July of 2005 after 2 years of symptoms. I started with stomach problems, reflux and built up acids. I thought I had started menopause because my periods would stop for a while and then start again. I was sent for upper GI and blood work, high cholesterol, showed only. I switched doctors in 20004 and I did not have a gyn at this time. I did not have insurance until around this time. My family doctor did my pap test and he ran all the panels of blood work. I told him about my periods being irregular after years of normal. He said my blood work showed only slight of pre-menopause. I also started having really bad mood swings, pain in abdomen, swelling, weight gain, and flu like symptom. My doctor puts me on antidepressants. I gained more weight and felt even worse. He changed my antidepressants. When he suggested lithium I said no. I know by this time his nurse was thinking I was a hypochondriac. I had 2 ultrasounds because my doctor was stuck on me being a big candidate for gallbladder trouble. When my right side started hurting he checked my appendix. I was so frustrated that I had decided not to go back to see any doctor. Then one night around the end of June 2005 I was laying in bed and felt a big knot in my right side. I had my husband feel it and he said I should go back to doctor. I was scared because my Dad had died from stomach cancer and I was also frustrated. I waited three weeks to go back to doctor. I went into his office with his nurse acting like I shouldn’t be there and I told them I had a tumor. They thought I was crazy for sure this time. The doc felt where I showed him and immediately sent me for a CT scan. I was told to go straight back to docs office after scan where my Husband had been called at work, an hour away, to be there too. The doctor couldn’t believe what he saw on scan. I had a 16cm tumor. The doctor was trying to decide where to send me, when my sister-in-law, who worked there, told me about a doctor in North Carolina, Dr Brigette Miller, of Bowman Gray. It was the best thing I ever did going to her. I had a complete hysterectomy or oompherectomy, appendix, and omentum removed. I had two ports put in and did taxol in top and carbo in bottom straight to peritoneum for 6 treatments. I was ok for 8 months and my CA125 went up. My CT scan according to radiologist at my area hospital showed nothing, but, my gyn-onc had her people look at it and they found a small spot. I tried to do a trial drug, but, it made me too sick, so I ended up doing doxil, which burned my feet really bad. I finished it in May 2007, just got a call today, Sept. 25 that my CA125 is up and I am to start tamoxifen tomorrow. I am feeling scared, because I don’t know what to expect from this drug. I can’t seem to go on with my life not knowing what is coming next. I have always been a very strong person. Cancer can do things to a person that you wouldn’t believe if you have never had it. I am staying strong for myself, my children, and my grandchildren. I have found that I really enjoy my own company now that I am not experiencing any of the uncontrollable rage and anxiety I felt before my surgery. I think I will stay around as long as the good LORD lets me. Good Luck and keep up your spirit with good thoughts.

My story begins like that of so many other women I have met with ovarian cancer. My symptoms probably began in about 2002. At that time, I started having problems with my period, fatigue, bloating etc., but was told that it was typical for someone my age (50) and signaled the start of menopause. I continued having regular checkups with my PCP, and was told that all this was “normal”. Throughout the fall of 2004, these symptoms continued to get worse and worse. I would sometimes go months without a period, and then it would return heavily for up to a month.

By December of 2004, the fatigue was so intense I actually remember arriving at work one morning (I have taught elementary school for 32 years) and sitting in my car crying because I just didn’t think I could make the walk up to the second floor to my classroom. Again I went to my doctor and she thought I must be having anxiety or stress and suggested an anti-depressant and to rest up over Christmas vacation. Finally, I was so sick and tired of being sick and tired, my husband took me to the emergency room.

There, after many tests, they found that my blood levels were so low from the loss of blood that I was so anemic that it had actually affected the amount of blood available for my heart to pump. I received blood transfusions, and was sent home with iron and told again to rest. Every type of test was scheduled to determine what had caused this low blood level. Colonoscopy, endoscope, you name it, I had it (with the notable exception of a CA125, transvaginal ultrasound or CAT scan.)

At every appointment with every type of specialist, I went through the symptoms I’d been experiencing, and repeatedly suggested a hysterectomy, since I clearly had no intention of having more children. Every test showed nothing out of the ordinary. My PCP sent me to yet one more gynecologist. After really listening to my story, he asked me if I’d ever considered having a hysterectomy, since I’d had so many ongoing problems. I was so glad-I wanted to kiss him!

I was thrilled to finally have an end to the vague problems I'd been going through. Pelvic exam and a transvaginal ultrasound prior to surgery showed all would be routine. I entered the hospital at 7:30 am on May 23 and woke up in a dark room at about 8:00 pm. The doctor came in and told me I had stage IIIA ovarian cancer. I was stunned-I'd never heard of ovarian cancer, except I vaguely remembered Gilda Radner had died from it. I looked at the doctor and just said "Cancer, cancer"? He nodded. I replied, "Like lose your hair and die cancer"? He nodded again.

That night was my initiation into the club no woman ever wants to belong to. I began a journey down a path that still continues. After my surgery I went home to face my new life in “cancerworld”. But there were more surprises in store for me.

During my last few days in the hospital, I’d had my first experience with terrific heartburn. The nurses assured me it was probably as a result of the pain medications I was receiving. They tried Nexium; it gave me a rash and itching. So I went home Friday, and promptly had my husband running to the store for Tums or anything that would help. Nothing did. Saturday, I sent him back with specific instructions to ask the pharmacist what was the strongest over the counter medicine for heartburn. She remembered my “heart incident” from the anemia and called me at home to make sure my heartburn couldn’t be a heart attack. I thanked her, explained everything that had happened in the previous week, and assured her it was just heartburn. She sent Aaron home with more over the counter remedies.

By Monday (Memorial Day) the pain was so severe, I knew it wasn’t heartburn. My son and husband rushed me to the emergency room once again. It was a heart attack! Tuesday I had an angiogram and Wednesday had cardiac catheterization to install 3 stents in my heart due to blocked arteries. Five days later, home again to heal and prepare for chemo!

I initially completed 6 rounds of chemo with a carboplatin/taxol cocktail every three weeks. I then opted to do 12 monthly maintenance chemo doses of taxol only. I have lost all my hair, eyebrows and eyelashes, dealt with nausea and incredible fatigue, but consider myself one or the luckier women I've met. I have been able to continue to teach and have found wonderful support and love from my family, friends, coworkers and "my kids." I have learned to appreciate the grace and joy of the simple things in life, and really to believe the adage" don't sweat the small stuff" and finally realized it really is mostly all small stuff.

The awareness movement that has brought so much information and knowledge to the world about breast cancer now needs to be brought to bear to share with the world about OVCA. The symptoms are vague and common (bloating, fatigue etc.) which is why it often diagnosed too late to be cured. As one doctor told me "if all women knew the symptoms my waiting room would be filled with middle aged women". The motto of the National Ovarian Cancer Coalition on our teal jelly bracelets is "it whispers, so listen. Women need to listen and speak up about our bodies! Then let's hope waiting rooms would be filled and lives would be saved earlier. Our lives, the lives of my "sisters" fighting this disease daily and the lives of our undiagnosed sisters and daughters depend on this.

Nancy Tufts
Portland, Maine

My mother taught high school Spanish for 30 years and was always the students' favorite. She loved teaching and thought she would never retire. She has 3 boys and was diagnosed with cancer at the young age of 54.

Unfortunately, for about a two week period in March 2007 she had stomach pains, the constant feeling of having to go to the bathroom and backaches that just wouldn't go away so she went to the doctor. Her normal doctor told her that she needed to make an appointment with her OBGYN right away- this scared my mother. She went to that appointment and a scan showed that her ovaries had two massive cysts on them- one 6 inches in diameter, the other 5- the size of 2 melons. The OBGYN even said that she was pretty sure they weren't cancerous. She even stated "If cysts that large were cancerous, you probably wouldn't be here today." This put my mom at ease. She was then scheduled for a common hysterectomy which she was nervous about, but I assured her she would be fine- 1 out of 3 women over 50 have a hysterectomy. The day after her surgery the doctor entered the room and asked to speak with my parents- my brother and I knew immediately it wasn't good news. They found cancer and by the way they said it- there seemed to be a lot of it. They told us to expect it to be diagnosed at a late stage (III or IV). We were devastated. We were also upset because there was no ONC on call when she had the surgery because they were "90% sure it wasn't cancer." Her OBGYN tried her best to remove anything that she thought might look like cancer, but that is not her area of expertise- so we thought she was bound to miss some.

So she recovered from the surgery and we went to a renown specialist who scanned her and saw another possible cyst that they might've missed and a fatty liver- which sounded as though it could be very life threatening. "Great, more surgery" my mother said. 3 weeks later they operated on my mother again. The doctor came out and my oldest brother asked "So Doc, what stage are we thinking?" hoping for a Stage II or Early Stage III. He said "Honestly, the lymph nodes tested negative for cancer and we found no cancer in the fluid. You mom seems to be a STAGE IC." Tears of joy started pouring down our faces. Her odds from a stage III or IV to stage IC have increased significantly. The cyst he saw ended up being scar tissue and her fatty liver was just that, fatty, but not cancerous! She is now on her 3rd treatment of chemo (doctor said it is only being given to her as a preventative) of 6 and is taking it like a champ. She has gone out and about almost every day of her treatment minus 3 or 4 due to her body aching. She is so positive and knows that she has a long life ahead of her. Me, my father, and my two brothers are behind her all the way. She plans on going back to school this coming January and being the students' favorite teacher once again. She said the hardest part about the whole process is not being with her students and not being able to take care of her family. For those with cancer, there comes a time where you may need to be cared for- let your family help. Take it easy, and stay positive! No matter what the percentage of beating that stage of cancer is, there is always someone who wins when the odds are against them. God bless.

My mother was diagnosed with stage 4 ovarian cancer in 2006. She had lupus and had a back surgery previously and always had pain in her lower back. It only got worse but she thought it was due to the metal plates in her back. By early February in 2006 her stomach started getting bigger and very hard. She went to her Dr. and he had a fluid sample taken. It was the next morning that she learned what the problem was. Of course she and my father were devastated. But her sister, my aunt, told her they would face it head on and do all they could.

She was a very musical person and full of life. My dad and she would sing and play guitar and piano together a lot. By July of 2006 she had gotten worse and was getting quite weak. She died on September 7, 2006. It was so hard being able to talk to her on Monday and by Thursday she was gone. I'm so glad we moved back to California when we did so we could have that precious time with her. I really miss her but I know she had a hope.

My advise to all women, even young women is to get a full examination each year and if there are symptoms you think aren't right...listen to your body and check it out. My mother had intestinal problems earlier on but dismissed it. I didn't know that could be a sign of probable cancer. It's better to be safe than sorry.

I had to travel to my country for surgery in June of this year, I had new insurance and had to wait 6 months until it would cover any type of surgery and the cyst my Doctor found on my right ovary was growing fast, I just couldn't wait any longer. I was so confident the cyst would be benign, I had read and read so much about how most cysts were benign before menopause, I'm 44 years old and I didn't think this would happen to me, but it did, the cyst was malignant, it was diagnosed as Epithelial Serous Carcinoma, I had a total hysterectomy, everything was sent to pathology and the only thing that was positive for malignancy was the right ovary, I guess that makes it stage 1, stage 1c since the cyst ruptured as the surgeon was removing it. I haven't had any treatment yet since my insurance here in the US won't cover it until the end of October. I feel healthy, the only thing I have had since I came back has been a CA125 with an order from an oncologist from my country and it was 5, I hope the "C" is gone or at least it won't spread too much until October! My symptoms before the surgery were like everybody else's, bloating, constipation and what kept coming to mind was IBS, I didn't even know this happened to women as young as 16 like I have been reading on this site, we need to tell the world about OVARIAN CANCER!

I want to tell everyone HOW IMPORTANT mental attitude is. My mother just passed away after being diagnosed with ovarian cancer one year ago. She was 65. From the moment she found out, she lost the will to live. She stopped going out anywhere. She would not see her friends. At one stage she even spent time in a phsychiatric facility, heavily drugged up. This went on and on. I did not return home to see her as it seemed pointless. My brother said she did not even know who he was- she was so out of it on drugs etc. My dad loved her so much too. She had everything to live for but would not fight- at all. I found out from my brother after she passed the other day that she told him she didn't think we needed her. Now she is gone and we are devastated. I cannot believe the pain and that I will never see her again. I am 30 but feel like a lost little girl. To all the ladies out there with kids- no matter HOW OLD they get or HOW FAR AWAY they may live, they will ALWAYS need their mothers- ALWAYS!!!! Even if you don't hear it from them, it is TRUE!!!! Just because we may argue and may not agree with you, doesn't mean we don't love you or need you. It just means that we are finding out own way. Every daughter takes great comfort in knowing you are there for her no matter what and that is HUGE to girls of all ages- believe me. So please- this is to all ladies- be positive, be strong, don't be afraid to reach out for support from all around and take support from the ones who may unexpectedly offer it. It is a beautiful life worth living and there are many around who love you and need you dearly- even if they never say it. Now- to all the daughters- no matter how difficult she can be- pick up the phone right now and tell her how much you love her and that you will always need her- you will be glad you did. God Bless all ladies and the men too who help support us all.

I always thought that when -- not if -- I got diagnosed with cancer, I would at least know what I was in for because you see, I have had two brothers with colon cancer, a sister-in-law with lymphoma, and another brother with prostrate cancer. I have seen people die, but I have seen people recover, not only once but after recurrences.

However, when I got diagnosed in July 2005 with endometrial, ovarian and bladder cancer, I did what everyone does: I fell apart.

You see, my family has Lynch Syndrome, the colon cancer gene. What most women don't know is that when you have it, you also have a much higher percentage than the normal population of getting endometrial, ovarian, and bladder. I got the "trifecta," three separate cancers at the same time.

I spent my 40s with recurrent UTIs, increasing pain, clotting, anemia, and a gyneocologist that ignored the fact that two of my brothers had colon cancer before age 40, and kept telling me I was in "perimenopause." At 48, I ended up in the emergency room with a kidney stone and severely anemic. The urologist got the stone out, walked into my hospital room, and told me to find a new gynecologist the day I was released. I had "something else going on," but as a urologist, he felt he couldn't diagnose.

I went to another gynecologist, who did my surgery, and said things look good. Two weeks later, I get a phone call. Endometrial cancer and Ovarian cancer and a referral to a gynie/oncologist. Another operation and I have Endo Stage IIIC, Ovarian II, and Bladder II.

Chemo and radiation follow. God, I was sick. On top of it, my brother, after not having a recurrence in 20 years, was told he was dying. He died a week after I finished chemo.

It was a horrible horrible time. But, I had very caring doctors and nurses, I was able to spend long afternoons with my brother, my employers were very good to me, my friends and cousins and family all pitched in to help us.

Today, I am one-year cancer free. I have a full head of hair. I am back working full-time. I am healthier. Will it recur? I don't know. The only benefit of Lynch Syndrome is that it has a higher cure rate and longer time between recurrences, in general. I look at another brother, cancer and recurrence within 17 years, and still going strong. I hope I am like him. Women, realize that if you have indications of Lynch Syndrome, do not let your gynecologist tell you increasing pain and clotting is perimenopause. Indicators of Lynch Syndrome are: multiple cases of early colon cancer across a generation and/or colon cancer with female reproductive cancers.

In a couple of weeks, I am getting my mediport out, the end, I hope, of a very long, treacherous road traveled!!!!

Char experienced most of the ovarian cancer warning signs however, since she had no family member history of anyone presenting with ovarian or breast cancer her GYN felt it was a pelvic infection and prescribed medication for that. In January 2004, He told her to come back in 6 months. She thought she felt a little relief from the pelvic pain and pressure so he told her to continue on the medication for inflammation and a pelvic infection. She came back six weeks later and said it was only getting worse. She was feeling heaviness and persistent pain. He (Gyn) still insisted it was an infection. I spoke to her in late September following a class I had at a local community college where I learned about the symptoms of ovarian cancer. I sent my mother the following list and said, "Mom, Ovarian Cancer is known as the "silent killer" and is very hard to diagnose; here are the symptoms, its your body and if he (the Gyn) refuses to investigate further then get a second opinion, you only have one life, and its your right/choice to get treatment." She called me on the phone immediately after receiving the e-mail and said she had most all of the symptoms:

WARNING SYMPTOMS OF OVARIAN CANCER

Contact your MD if you develop one or more of these symptoms and they persist for 2-3 weeks:
-Abdominal Swelling/Bloating/Clothes Too Tight
-Abdominal/Pelvic Pain or Pressure or Feeling "Full"
-Gastrointestinal Symptoms (such as gas, indigestion, nausea, or changes in bowel movements)
-Vaginal Bleeding or Discharge
-Urinary Problems - Urgency, Burning, or Spasms
-Fatigue and/or Fever
-Pain During Intercourse
-Back Pain
-Difficulty Breathing

I encouraged her to get a second opinion immediately. She also had a slightly elevated CA-125 but less than 30 which is why her GYN felt there was no cause to be concerned. He was insulted that she was seeking another opinion. The second opinion was that it was highly likely that she had ovarian cancer. So she got a third, it repeated that she likely had ovarian cancer. Her Gyn still was reluctant to believe that and insisted it was only a pelvic infection. She boldly insisted on an exploratory surgery and he agreed to do it reluctantly. It was scheduled for December 28, 2004. Her Gyn did not have an oncologist present for the surgery, tried entering 4 different places and could not... she was full of cancer. They determined it was ovarian cancer cells, and also outside of the ovary, tubes, and wall lining. He said he was sorry, she said, "I accept your apology, where do we go from here." They began the chemo with Taxol (she reacted to) and Carboplatinum, later Taxotere and Carboplatinum and she had a full hysterectomy about 6 weeks later. The rest of her story is a battle with many ups and downs. If anyone has any questions at all there is nothing that I will not answer. You can ask me anything and I will tell you how our situation went. Sometimes we all just wanted more info. Hours before her death something I read on a forum like this actually helped me to deal with those last moments and I appreciate the honesty and frankness of that poster. Her actual passing was beautiful, special, and supernatural.

She passed away peacefully January 31, 2007.

Well it was breast cancer I was looking for. My mother and sister were diagnosed six months apart about eight years ago. We lost mom to a heart attack in September 2003. My sister had a second cancer, stage 1 in the other breast in July 2007 and is currently getting radiation treatments. I started getting checked twice a year thinking I was next. Well, I was next but not with breast cancer.

I noticed spotting in August 2005 and since I was post menopausal I decided to get checked out. My GYN examined me and decided to send me for an ultrasound where a large tumor was discovered on my right ovary. A CA-125 blood test was drawn and a week later I was informed that the test results were elevated in the 900 range. I was sent to an oncologist and within two weeks had surgery. I had stage 3 ovarian cancer that had spread to my small intestines. I had a complete hysterectomy and some debulking. I was told I would need chemo and would lose my hair. I had a friend take photos of me having my head shaved and trying on different wigs. I thought I would be depressed but I wasn't ... I decided I was going to make the best of this situation. I had six rounds of Carboplatin & Taxol (every 21 days) then 5 rounds of Doxil (every two weeks but I had to stop because I couldn't tolerate the drug) then back on Taxol for consolidation (one year). I finished chemo in February 2007 and am currently cancer free with a normal CA-125. I don't pay attention to the statistics because apart from what was done for me medically I believe in the power of prayer and the healing hand of Jesus. I'm grateful to God for the skills of the surgeons and chemo nurses that took care of me and all my friends who prayed for me. Cancer did not define my life. Cancer was just a speed bump on the road of life. It's not the destination that's important; it's the journey. I appreciate life more now than I ever did before. Also, remember that a positive attitude can be the best medicine. A smile can heal a lot.

“OUR SWEET GIRL”
Brittany Waldrep’s story
As told by her sisters, Megan and Stacy

In the winter of 2004, a large tumor was discovered on Brittany’s left ovary during a sonogram. Brittany had a CA-125 test; the results were normal. Later, the tumor ruptured as it was being surgically removed. Biopsy results showed that it was malignant, stage I, grade one, ovarian cancer. For the next two years, Brittany was a diligent patient, visiting her doctors every three months for check ups and regular CA-125 tests.

In the spring of 2006, she began to have stomach pains. Unable to find a reason for her distress, a laparoscopic examination was performed on May 23rd. The original cancer had metastasized over the last two years. Within a week, the cancer began forming blockages in her intestine; additional surgery was performed to relieve her pain. This left our Brittany with a colostomy and an open abdominal wound. Her pain continued to grow worse and was often unbearable. But, she desperately wanted to live. We were told, correctly, that this cancer would probably be unresponsive to chemotherapy. Still, she endured several rounds. Brittany died less than two months later, on July 20, 2006.

We must draw attention to the fact that there is no reliable test for this "silent killer”. A CA-125 test measures a protein found in blood that may be higher in some women with ovarian cancer*. Unfortunately, it is only accurate in detecting stage I ovarian cancer approximately 50% of the time**. When Brittany's CA-125 level began increasing, about six weeks prior to her May 2006 diagnosis, the cancer was already in the later stages. Her ultrasound, Pap test and CT scan initially provided what any doctor would call "normal" results. Brittany listened to her body when it whispered that something was wrong; but because there is no reliable test, her physicians were unable to immediately detect the initial or the metastasized cancer. This silent killer is responsible for taking the lives of thousands of women every year. Only 45% of women diagnosed with ovarian cancer will live more than five years*. We cannot sit back and wait for survivors of ovarian cancer to take the lead in seeking a test to accurately indicate the presence of cancer; there are too few!

Prior to her diagnosis, Brittany was enjoying her first ‘real’ job, post-college, and saving to buy a house. She was a great daughter, a loving sister, and devoted aunt. Britt loved her many friends, and was always ready to go out to eat, to the lake, or to the beach. But she was taken too soon, and her loss has left an empty place in the lives of all of those who loved her.

Brittany Waldrep died in the early morning hours of July 20, 2006, a couple of months before her 25th birthday. Please join our family and friends and the Norma Livingston Foundation to raise money to fund research for ovarian cancer. Additional tools to detect and fight this cancer are so desperately needed.

We have started two websites for our sister.
www.brittanywaldrep.com
www.ovariancancerforum.com

* American Cancer Society
** Johns Hopkins Pathology Online

On 11-29-03 I lost my Mother to Ovarian Cancer. This is her story. Mama became a widow at the age of 39 when my father was killed in car crash. She raised her 4 children alone after my father died. Her passion in life were her kids & church family. Mama was a lifelong sunday school teacher & all kids loved her, she was your quintessential mother/grandmother who always had a hug or milk & cookies for those who needed it.

In 2001 right after 09/11, mama became very ill & had severe abdominal pain that would not go away. After a couple of trips to the ER her family doctor had her hospitalized for tests. They all came back looking really bad. The worst they told us was a huge swollen lymph node in her groin that needed to be removed surgically. The surgery was on 10-12-01 & after 10 hours of waiting in the OR waiting room the doctor finally emerged with the news that they had found extensive ovarian cancer. She stayed in intensive care for 3 days then went to a regular room where we were told that her cancer was stage IV.

Mama was such a trooper & a fighter. While those surrounding her were crying she would firmly tell us that everything would be okay. In fact she ordered no crying or sad looks allowed. The doctor put her on Taxol/Carboplatin chemotherapy and for the most part she did okay. There were only 2 episodes of vomiting severe enough for medication. She finished her rounds of treatment in January 2002 & went right back to her life as a teacher & dispenser of love, milk & cookies. In May 2003 Mama just did not seem like herself, she was forgetting things & had frequent headaches. Her oncologist ordered a ct scan. It showed that the cancer had metastisized to her brain. They said this was really rare but it happened. Mama had a few rounds of radiation that did not work so they sent her home on hospice in late June 2003. We set up her hospital bed right in the living room next to a large picture window at her request. I took a leave of absence from work & my 2 sisters moved in with Mama. We took turns trying to take care of her but usually she would have none of it. Frequently we would find her in the kitchen cooking. Her church family were awesome during this difficult time. The kids would come on wednesday nights to sing & make crafts with her. The choir ladies came every tuesday & thursday morning to sing for her & often they would come just to visit. I have to say as hard as it was there was also so much living & joy during this time as well. My Mother loved to camp out on the river, something she had done since she was a child. Well, since she was in a wheelchair & on hospice care her doctors advised NO camping... One weekend morning toward the end of summer when she knew that 2 of her brothers & their families were on the river camping she sent me on a "fake errand" & when I returned there was my uncle loading her wheelchair into his truck & Mama sitting up front ready to go. I treasure the memories of that day. I can still hear her laughing with joy while watching the kids swim. Mama passed the day after Thanksgiving 2003 with all of her kids at her house, she was 63 years old.

PART I

In March 2006, after months of severe fatigue, I developed flu like symptoms and a wheezing in my lungs. I let it go for a couple of weeks, and only after I developed a pain in my chest did I go to the doctor. Asthma. That was the first diagnosis. The doctor prescribed steroids and inhalers and sent me home. He took x-rays of my chest but apparently never read them. Within a week I was back in his office. I could feel fluid moving throughout my chest. He finally took out the x-rays and read them. There appears to be something in your lungs he said. He prescribed antibiotics and sent me home. Within a week I drove myself to the emergency room because I could barely breathe and my chest was on fire. I was admitted into the hospital where the doctors diagnosed me with a plueral effusion. Fluid was also spilling into my abdominal cavity. There could be three causes for this they said. Pneumonia. Congestive Heart Failure. Cancer.

Within the week a blood test and the analysis of the fluid pulled from my lungs indicated cancer. The next couple of days revealed it was Stage IV ovarian cancer. I had a small tumor on my left ovary. (I had been having a pain in that area for about 4 years which I thought was the result of a step aerobics class). There was a large mass on my omentum. The fluid around my lungs contained ovarian cancer cells and a Cat Scan revealed suspicious spots on my kidney and a lymph node in my chest. It was a week after my 45th birthday. My mother was diagnosed with the same disease at exactly the same age. She survived 4 years. I began my journey thinking that I would survive. If my mother could undergo chemo, who was I to be a weakling?

I was assigned to a gynecologic oncologist. I liked him immediately. He prescribed 8 sessions of chemotherapy, carboplatin and taxol, to be followed by surgical removal of my ovaries, omentum, cervix, and appendix. I was fortunately able to take a medical leave from work. I showed up at the infusion clinic dressed with make up on, a packed lunch and inspirational reading. My session took six hours. I was at the clinic longer than anyone there. The nurses were great. Over the next few months I got to know them very well and they advised me on everything from managing chemo side effects to the best mystery novels to read. Of course I was very ill after each session and my hair went very fast. I was proned to passing out and three times woke up and found myself slumped on the floor. I had completely no appetite and would not eat for at least 5 days after a session. I developed acne, sores in my mouth, severe pain in my legs and thighs, and constipation. My brain also got a litte foggy and often I forgot things. But each session, I got up and got nicely dressed. I found that after one week after a session I begin to gain strength until the next session. Cranberry juice, lean chicken and fish, broccoli, rice, and watermelong (when I could eat) made me strong. Prayer made me even stronger. People from around the world prayed for me. I joined a support group and those ladies were my sisters. In between chemo sessions my friend Shirley and I went out - coffee a cafe, bookstore browsing, museums, walks. Every month we went to the casino. At the end of my chemo my CA-125 levels went from 4000 to 19.

In September 2006 I had a six hour surgery. Within four days I was home and healing just fine. I meditated and prayed each night. "Cancer, you will not kill me! I want a spontaneous remission!" was my mantra. On November 1, 2006 I went back to work. I get the CA-125 test every 3 months. My last level was 10. It has been a year since my diagnosis.

I do have a fear that the cancer will return. I have learned to live with that fear and keep in the back of my mind, not the front. I do have a renewed appreciate for each day of life. Since my diagnosis a friend was diagnosed with Stage IV lung cancer. She was dead within 4 weeks of that diagnosis. Women from my support group have also passed on. My neighbors son was gunned down at the age of 25. Believe me each day alive is a good day. For now, I am alive and well. I work each day and do the things I enjoy doing. I've applied to attend graduate school. My hope for others who are facing this disease is not to despair. Seek strength from others and appreciate life one day at a time.

PART II

N.E.D! It's been more than 4 years since my fight with metastatic stage IV ovarian cancer. Just saw my ongologist 2 months ago and my CA-125 was 5. Way back in 2006 it was 4000. I'm enjoying being with my friends and family, working, and doing the things that make me happy. I thank God for my friends and family, the oncology nurses and my gynecologic oncologist. The special things I do to try and keep my health: I try and eat right at least half of the time. I try to eat all those foods they say prevent cancer. I take the herbs and vitamins they say help fight and prevent cancer like ginger, CoQ10, green tea & capsaicin. I work hard to keep my stress level down. I took a workshop at the local hospice on preparing for the end of life. Everyone thought that was so weird, but it calmed me down tremendously. I plan on living for a long time, but if this disease returns I want to fight when it's good to fight, and let go when it's time to let go. Most importantly I keep my medical appointments, listen to the advise of my doctors and always let them know what I am doing and taking. My message to others: Enjoy each day as if it was your last. This life is a journey that eventually ends for all of us. Today, good things are all around. Keep up the good fight.

The end of life journey for my mother. Mom was healthy all her life (no colds, ate healthy, dressed appropriately in various seasons to not get sick, etc.) On Jan 17th, the nightmare began when I took mom to ER because of breathing problems. After her admission to the ER I was told that it "might be ovarian and breast cancer". WOW, I could not believe what I was told. Mom also had showed the ER docs a mass (light green color that had grown outside her belly button/on her stomach - exposed). This was the mass - mom did not share this with me but daughter knows she is very sick and dying. The ER docs ask me if I had seen this (and i had not); Mom even told the onocologists that "the secret" is out - and now moving forward, Mom was admitted to the hospital at Vanderbilt University-Nashville and she stayed there for 10 days; when released, she went home. On the 7th day at home, one morning, Mom had been up all night and told me later that she had a pain in her left leg like her leg was turning/twisting in knots and she immediately had me taken her to the ER room. Again she was admitted to hospital for several days (cancer had spreaded a lot); we met with oncologists team and her pcp and the oncologists wanted to start chemo. Before we could begin first round of chemo, Mom started throwing up blood and blood came out of her urine and stool (she had to be admitted to intensive care). I never forget, it was my birthday, Feb 14th, and when I arrived to visit her, she acknowledged my birthday and wished me happy birthday. During the entire cancer process, mom was alert but mom did not eat one bit of food from day one until she died. Mom's memory also started to go; when I got all the medical bills in the end, I found out they had ran some serious tests on my mother; they only told me the basics; cancer, prognosis and that was all. Mom just would not eat; all mom wanted was water, ice and that was all during the entire 2-month process. Mom was in and out of nursing homes because it was only me and my mom at home. See mom moved in with me because prior to the cancer she had a stroke 1 -1/2 years ago. When Mom had the stroke, the same hospital Vanderbilt ran all types of tests and I now wonder why wasn't this cancer detected then? After her stroke, the docs told her she had recovered very well and was doing good. My mother, a fighter, had ask help to get back on her feet with Dad's death 10 years ago of skin cancer, so it was just my Mom and I. Anyway, to get to the final part of this story, the oncologists and her pcp recommended a nursing home so someone could be with mom 24/7. The prognosis in the end was with chemo 1 to 1/2 years and without chemo 6 months or less. We did get one round of chemo in but that was all. The pcp doctor told me "everytime we fix something on your Mom, somethings else breaks." The pcp doc kept me well informed of Mom's condition everyday until the end. The hospital removed lots of fluid from Mom's body twice (the fluid removed filled 2 large bottles, she told me it really hurt). But Mom was doing anything to live. My mother and I know she wanted to live because she told me one day, no one wants to die. Mom's feet swelled very badly but her breathing and spirits were good until she went into the last 2 nursing homes. When I had the final friday talk with Mom and her pcp, we were told, there was nothing else they could do and recommended hospices. In my mind, I knew it was a matter of time to spend with mom. When she arrived at her final nursing home, a lady told me to spend as much time with my Mom as I could. Mom had a strange request the day before she died. She asked I bring her a bell, a back scratcher, and a yellow sheet/table cloth (so she would not get anything dirty). Also on the day before she died, I went to see her and she kept staring at a mirror to her left and then staring down the hall to the right. I asked her if she was ok and she said, "Yes, I am ok". The next day, Mom passed away in her sleep at 71. She died at 7:25 am. The death journey lasted approximately 2 months. Looking back from all of this, I remember one thing that could have "possibly" prevented all of this. Back in 1976, when mom went to her pcp, they told her she had a small tumor. Nothing was ever said or done after she was told this. Mom also told me that she thought because she had a large stomach and always wore big clothes that she just thought she had a big gut. Mom said to me she always thought she was a very healthy person. Ii had to deal with losing my mother all by myself. I had her cremated because I wanted to kill the cancer once and for all because the cancer took my mother quickly and swiftly. To end my story, I want to say anyone diagnosed with ovarian / breast cancer, this is a death sentence. It is a quick and swift death sentence. Mom was bedridden during the entire process and had to have a decatheter to use the bathroom. She tried to be strong but the cancer did not allow my mother to be strong. All mom kept telling me was "I am very tired". Mom was so much of a fighter that several months before she was diagnosed, she continued to go to the NFL Titan football games; she told me she was tired and went but never complained to me about her health. Mom told me she did not want me to worrry. That was Mom.

Ovarian cancer is a silent killer; one can be healthy as a horse, have no health ailments and overnight get diagnosed and die quickly. I miss my mother so very much; I love her but I know that I will see my mother again one day.

PART I

My mom, Barbara, was diagnosed with Ovarian Cancer stage 4 on February 22nd, 2005 and told she had maybe a couple months left. What can we do? Nothing really but I still want you to see an Oncologist. Off we went to the local cancer center....had more tests done and told maybe with some success that she might have a year or two. She started with chemo cheerfully. I was so surprised...I thought she would give up...fade away. But she told me that all her life she worried about getting cancer and now she had it so there was nothing more to worry about. She told me that as a child she visited a relative who was dying of some terrible disease-cancer. What she saw was a middle aged woman screaming from pain. She buried her grandmothers, father and husband and best friend who all had one form of cancer. Now she knew how she would die and would deal with this one day at a time. No more fear. She was going to enjoy what was left of life. She continued with chemo, her CA numbers dropped and then started going back up in September. They took her off chemo in November and got her ready for debulking surgery. On December 13th of 2005 she had the surgery. She was home in two days and back on her feet feeling the best she had in years in January. She said, "If I didn't know better I would say I did not have cancer--I feel really good." In the past year, we lost a friend to ovarian cancer. We decided to plan a big family cruise in July. She slept alot on the cruise and had a reduced appetite; but would get up sit on the balcony and read each day, enjoyed the food, being waited on hand and foot and the company (good friends and her kids and grandchildren)-she had a great time...Over the next few months...we saw her little by little start to look more tired. The chemo was not working....they would do a few rounds, and the CA 125 Marker would go down then back up....she gave her notice for her part time job as our church choir director and went through the summer. She had an infection and had to be hospitalized in November for a week. In December, another friend, much younger died of cancer. In February of 2007 we did another cruise-she did okay but slept 75% of the time. But it was okay....now her legs are swelling, they are feeling things inside her abdomen, she had been short of breath and more tired. They did a pet scan last week and there is a big tumor which is impacting her colon and several in her chest where they do not expect to see re-occurrence of ovarian cancer. So in two days she is going for another biopsy. Is it ovarian cancer or is a re-occurrence of another cancer she had back in 2000-Melanoma stage I? We are praying that the doctors and treatment will give her more time-more quality time. Her attitude is so positive and happy. She is not letting this cancer define her....It is something she lives with and some days she hates it, but she is finding something wonderful every single day. I tell her that she is giving me a gift by being so upbeat, positive and by setting an example of hope and acceptance. She is embarassed by that. But she is my hero. And I LOVE her. Now we need everyone's prayers. My mom's life is in God's hands. Please keep her in your prayers.

PART II

We were fortunate that my mom's biopsy came back as ovarian cancer and not melanoma as we feared. But the ovarian cancer was in a strange place; It was not where they expected to see it.

She continued to have difficulty breathing, tried another chemo which worked for a short time and to get more and more tired. Little by little she stopped doing things like her laundry, driving or cleaning up and then she ate less and less. Then we spent time at the hospital for a clot she had in her leg.

We started taking her to the hospital to have her abdomen drained of fluid every couple weeks. It gave her relief for a day or two before it started growing again and the legs swelled. The swelling got worse, she stopped being able to wear shoes or want to go anywhere.

I think she really stopped eating in July. She ate a good plate full of food on July 1st at a picnic. She felt good that day, laughed and enjoyed the day. She seemed herself that day and continued to feel okay for a couple weeks. She even cooked for my brother's picnic on July 21st. But shortly after that she stopped eating and got very weak. Oh, she nibbled here and there and I would slice ham into small quarter size bits and wrap them individually. She would eat one or two and a handful of grape tomatoes. That was a daily amount of food she would eat. She also kept up on drinking energy drinks to help her stay alert.

We went to the doctor's in early August of 2007 and they told us that they did not have any more chemo treatments she could try. The cancer had become estrogen resistant and her body was not tolerating the treatments anymore. They told us it was time for Hospice to get involved. I remember her looking up from the wheelchair I brought to the nurse’s eyes and asking if she would be around for Christmas. They said probably not and she looked at me with tears in her eyes. It was the last time I saw her cry about her illness and dying.

Once she took in the news and met her hospice nurse she really perked up her attitude and became positive and happy again....as she had during her treatment. We planned big dinners every weekend, had a huge picnic over Labor Day weekend and had company in all the time. She loved the attention.

One day she said to me, "my biggest regret in life is that I did not visit friends when they were sick as often as I should have. I was always busy with work or the family." She gazed at the flowers someone gave her and said, "these are such an expression of love....I should have been more sensitive to other people's sufferings." I never thought she was not sensitive to others; we did visit sick friends and family.

She said goodbye to everyone and visitors left feeling uplifted and hopeful about everything when they visited her. She joked about and was incredibly candid about her impending death and openly shared her feelings with us all. I asked her if she was mad about leaving us while she was still so healthy and vital and she said, "No, this is what is meant to be...it is my journey to take." She was so full of life even right before her death.

One day I was taking her slippers off and helping her into bed and I looked up and she grabbed my face with her hands and with tears in her eyes said, "Thank you...Thank you for what you are doing for me. I can not tell you how much I appreciate this and love you for this." Those were not tears of regret but tears of love and I took that moment as a gift from her.

In the last couple weeks of her life she started to react to the pain patch. She was grabbing things with her fingers, almost like she was sewing. She even thought that was funny....she did not know why she was doing it. Then she saw people (like my nephew) sitting in the room...She began to talk to herself.

It got bad one night and she fought me when I tried to wash her up and get her situated in the hospital bed. I called the Hospice and asked them to find a bed in the Hospice Hospital for her and that I was near the point where I could not take care of her properly. My sister-in-law over to help and we got her settled and comfortable. She managed to tell me she knew she was not making sense and was confused. What I did not know is that she had asked the Hospice nurse that day to be moved to the Hospice Hospital as soon as a bed was available.

The following morning the Hospice nurse arrived and told us they had a bed for her. I felt relief but also felt bad. My mom would be leaving her home for the last time. A week before I had told her that I dreaded that moment when she would leave for the last time. She told me that death and life are a series of steps or notches. And told me that when she left the house for the last time not to think of it anymore than that....a notch or a natural step in life. When the ambulance drivers were taking her out that last day she actually grabbed my hand and opened her eyes and in her stupor said, "It is only another notch." She was referring to the conversation we had a week ago...Imagine her-comforting me at such moment. Once she was at the Hospice they took her off the patch and put her on morphine instead her mind cleared. She stopped talking that much and every once in a while could speak or answer questions. She told me that her loved ones where there and trying to take her. She was afraid to go with them. She did not want to leave us. I went down a list of deceased relatives and friends and most of them where in the room. She had told me that her father was in the room and when she tried to talk to her he told her he was there to keep an eye on her and take her to heaven when it was time. In the mean time she was not to talk to him but to us. Our priest came down and we prayed with her at her bed. She tried to cross herself and seemed to relax. He comforted her and told her to go with them if they wanted her to go. After this it was difficult to understand what she was saying. We sat there, kept each other company and held her hand. It was a wonderful relief to have the staff to care for her and us. The night before she died everyone left one by one to get home, get the kids to bed and get some sleep. I couldn't leave, I wanted to share every last minute with her even if she was out of it. I sat there in the dark holding her hand and one of the patients in the room called me over. She said, "What would your mother tell you right now?" I said, "she would tell me to go home, get some sleep and come back in the morning." She told me to listen to my mother. I was exhausted. This patient told me she would watch over her for me. What an angel. I reluctantly left and was back in the morning. It was so sunny outside. This Hospice is on the Long Island Sound. I looked out at the water in her room and saw boats going by, waves hitting the shore and sea gulls flying about. It was a beautiful day to die. My mom was awake and alert. I described what it looked like today. I smiled at her and told her that I loved her. She just stared at me. The nurse came in to clean her up...I went next door to the lounge and almost immediately she came flying in telling me to hurry up...that she was going now. I flew back into her room. Her eyes were closed but she clutched my hand when I held it. Her color got very dark reddish-grey and then the color left her face at the same moment she let go of my hand. I know this sounds corny but I looked up at the beautiful sky and in my minds eye saw her-young, beautiful, happy and pain-free in the sky outside her window. When I looked back down at her face she was just a shell. The beautiful part that was my mother was released. There was no sadness in seeing her like that. She was out of pain. And I was privileged to be there for all of it....from the day she was diagnosed to the day she went to heaven. Like so many people, I wish I hadn't needed to work and could have been with her the entire two years but she laughed and said, "You must think highly of yourself to think I would want to be with you that much!" It has been almost five months now and I have to tell you that I learned more about how to live from her death than anything else. You see, my mother did not let cancer rob her of her life. She said that she lived with cancer-not in spite of it. She took her treatments and followed the nurse's and doctor's advise. She called cancer her blessing and really enjoyed what time she had left. She didn't let her illness spoil any moment that was left-cancer did not win and that has truly been a gift to us. My mom was a retired therapeutic recreation director in a nursing home. She said that she learned about life and how to die from some of the residents there. One in particular taught her a poem about death:

The Beyond
It seemeth such a little way to me
Across to that strange country – the Beyond;
And yet, not strange, for it has grown to be
The home of those whom I am so fond,
They make it seem familiar and most dear,
As journeying friends bring distant regions near.

So close it lies, that when my sight is clear
I think I almost see the gleaming strand.
I know I feel those who have gone from here
Come near enough sometimes, to touch my hand.
I often think, but for our veiled eyes,
We should find heaven right round about us lies.

I cannot make it seem a day to dread,
When from this dear earth I shall journey out
To that still dear country of the dead,
And join the lost ones, so long dreamed about.
I love this world, yet shall I love to go
And meet the friends who wait for me, I know.

I never stand above a bier and see
The seal of death set on some well-loved face
But that I think ‘One more to welcome me,
When I shall cross the intervening space
Between this land and that one “over there”;
One more to make the strange Beyond seem fair.’ And so for me there is no sting to death, And so the grave has lost its victory. It is but crossing – with a bated breath, And white, set face – a little strip of sea, To find the loved ones waiting on the shore, More beautiful, more precious than before. Ella Wheeler Wilcox My mother asked if we could incorporate that poem into the funeral somehow. I had the last stanza embroidered into the inside of her casket and made home made thank you cards with that poem printed just inside. It says what she believed about death and wanted to share that with everyone. My wonderful mother and best friend: Barbara 1934-2007

My name is Erika and I am sixteen and was diagnosed with stage III ovarian cancer in January of 2007. It was like a nightmare I couldn't really explain and living through something twice because my mother had been diagnosed with the same thing three years earlier. My story is a little different but I want to share it in order to give hope to those who are going through the same hardships i am right now.

It was Christmas day, and Ii was enjoying the holiday with my family when I started to get strange stomachaches and pains and it got to a point where I found it hard to move. New Year's came and the pain had grown and so had my belly. My friends had made a joke and would ask me when I was expecting and as funny as it was I knew deep inside something was not right. I asked my mother to go to the doctor and I went and she felt my belly and told me I was severely constipated and I needed was some laxatives and I would be good to go. I felt a sense of relief when she told me because I had been getting a feeling it would turn into more than that. After I had taken my laxatives, I expected to feel better, but that wasn't the case. New Year's came and went and I spent most of it on the couch in a pain I couldn't explain as my stomach continued to grow. I asked my brother to take me to the emergency room the day my parents had gone on vacation. It was January 5, 2007 when my brother and I went to the emergency room and I spent about 12 to 14 hours there with my brother, my cousin Rose and her husband. When they told me I had to be transferred from Somerset Medical Center to Robert Wood Johnson University Hospital, something in my mind clicked and I knew I wasn't okay.

The doctors were not allowed to tell me anything because my parents had not returned from vacation. They had gotten there and spent 12 hours there and ended up having to come back when they received the call that I was in the emergency room. When they came back, the next day, January 6th, I was told the reason I had been feeling so much pain and growth in the abdominal area was the result of stage III ovarian cancer and as the doctor said it herself, it was like she couldn't believe she was saying it either. She had seen my CAT scans and she sees ovarian cancer everyday so she didn't think anything of it until she looked at my birthday and said the two couldnt coincide because I was too young.

I am the youngest patient known to have stage III ovarian cancer. After I found out, they had planned surgery for me. On January 12th, I went under the knife. They removed both my fallopian tubes and my ovaries. The recovery was painful and hard but I underwent it with the strength and support of my family & hospital staff. My first chemotherapy treatment began on January 20th, and I was released from the hospital the next day. I had spent almost an entire month surrounded by disease and weakness and was finally able to get up and breathe in fresh air; but that didn't last too long. I spent most of Feburary in and out of the hospital because of my blood cell count until finally in mid March I was stabilized and okay and home for good.

Since January I have undergone six sessions of chemotherapy, every three weeks. My CA125 is checked every two weeks. When I was first diagnosed with cancer my CA125 was over 900. With surgery alone it went down to around the 230's. After two treatments, it was around 220's and it didn't budge, so my doctor decided to up my chemo meds to see if the numbers would change, and they did. My CA125 went from 230's to THIRTY FOUR. I was thrilled, excited, and for the first time in four months I felt alive. The last visit to the doctor my CA125 had went down again, now to 22. Every time my CA goes down it ups my confidence to fight this terrible silent killer and the boost I need to carry on each day.

I am on carboplatin and taxol, and since my body is responding so well she plans to keep me on it for three more rounds, and then to a CT scan and see if secondary surgery will be needed. Even if it is, when I see my numbers going down so drastically, I think of how one day my life could possibly be normal, my life could possibly one day be cancer free. I will fight, and I will defeat this.

My mother was diagnosed with Stage 4 Ovarian Cancer in February 2006. She had a history of back trouble and thought that the pain she had was due to that. Her abdomen began to build up with fluid so she went to her doctor and had some tests done. Her CA 125 was very high. She tried to go the homeopathic route first but it didn't work. By the time she decided to get a hysterectomy it was too late...the cancer had spread to her lungs. I am trying to learn from this and make sure that my sister and I get checked often.

I really miss my mom but I'm glad we moved back to where she lived so we could be near her that last year of her life. Spend as much time with your parents, because you never know what will happen in life.

My mum was first diagnosed with ovarian cancer in 2000. She had surgery and chemo.. 5 great years.. then just as cancer was out of our minds it had returned in 2005. The cancer was now in her pelvic bone. Another op and chemo and 6 months. Then another chemo which she finished in December 2006. Yesterday, cancer entered our world again..

Why? I've stopped asking .. no I lie.. I ask myself all the time.. believe it or not I still say it's not fair. But this is what we've been dealt for some reason.

She had tried alternative treatment and still does. She is still well but in a couple of weeks will again start another round of chemo. She copes okay with chemo.. She's one strong lady.

I am grateful that we've had 7 years. So much more luckier than most with this horrible disease. But in all honesty it's not long enough. She's not old, she should have another 20 years. I should have another 20 years with her.

To all who are suffering, you are not alone, so many suffer with you.

Today, I write a story of the most courageous, beautiful and determined woman I've ever met in my 32 years of life.

At the age of 49 Mary Jane Carper was diagnosed with Stage III ovarian cancer. In November 1995 my mother Mary Jane said, "Hope, feel this in my stomach". I felt a hard pea sized knot below her belly button. I said, "Mom, you should have that checked out". No more was said that day, nor for another 2 months about the knot.

In January 1996 the knot grew larger and my mother decided to go see her GYN. This doctor was immediately alarmed and sent her to see a GYN specialist who immediately scheduled a battery of tests and scans. Her CA125 tests was high and they scheduled a surgery to explore what was going on. The surgery confirmed Stage III ovarian cancer. No chemo was scheduled. The reason for this was because the cancer had not spread to her lymph nodes I assume. Her doctors at this time were not very aggressive with treatment and basically told her to quit drinking alcohol and quit eating canned food.

So, four years later in January 2000 she went in for gallbladder surgery. They decided to open her up because of her past history with the cancer. At this point she had a new set of docs and the general surgeon invited a GYN oncologist into the operating room. In short, her gallbladder was fine, but her cancer had returned. The cancer had spread to her bowel and other areas. This time around would be different.

Mary Jane Carper battled her cancer with determination and underwent more than 2 and half years of aggressive chemotherapy to the point she had to stop in order for her to have quality of life for whatever time she had left.

During her three year battle with ovarian cancer she had multiple surgeries for bowel obstructions, she lost the ability to eat solid food and she grew extremely weak. There is no denying that she suffered.

One thing I will tell you now that has not been mentioned in any of the story above is that my mother was a very heavy drinker. She drank alcohol almost everyday. While there are many contributing factors for cancer, we are confident this did not suppress the aggression of her disease.

During her second battle with cancer she quit drinking completely and faced the ugliest moment of her life sober. We were there by her side and at times probably did not appreciate or respect her fear, sickness and pain.

We wonder if we would have researched this disease when she was initially diagnosed and possibly challenged her doctors if life would somehow be different now.

My mother was my best friend and the pillar of our family. Life is forever different. I learned a great deal about her through the battle of this disease and about myself and the strengths of our family.

Question your doctors, get screened for ovarian cancer, CA125 blood test, transvaginal ultrasounds, exploratory surgery. Believe me as scarry as these test sound their not so bad. Prevent this disease from being the 'silent killer' it is.

In loving memory of Mary Jane Carper.

My mother was diaognoised with stage 4 ovarian cancer in 1993. It matastisized to 12 places in her abdomen. She went through surgery and chemotherapy and did not have a reoccurance for six years. She under went chemo again and did not have another reoccurance until the spring of 2006. My mother is now undergoing chemotherapy as a maintenance treatment and is not expected to go into remission again. She has been on chemo for a year now and it is begining to take its toll. I just want to tell other patients that ovarian cancer can be scary but there can be long periods of time when life can be very good in between occurances. Just make sure that you get a doctor who communicates well with you and make sure you understand what you are facing. Understand what side effects to look for; talk openly with your doctor about how to decide when treatment should end; and what to expect when you do end treatment and you are facing the teminal stages.

August 2003 I awoke with terrible pain in my lower left side. I thought it was a gallbladder attack. I went to a clinic and then a specialist who ordered an ultrasound. They discovered a large mass and I had a complete hysterectomy in October 2003. They removed a 17 lb. tumor that was malignant, but it had not spread. My CA-125 was <1 until May 2006 when it jumped to 60.

On May 20th I was sitting and I took an unnatural double breath. I said to myself, that was weird. Within a week, I could barely walk since my lungs filled up with fluid. I had debulking surgery June 27th and the fluid came back Stage III. My ovarian cancer had metastasized.

I began a Stage II Clinical Trial (Make sure everything is okay with your insurance company) on July 27. I received three drugs every twenty-one days. When I began, my CA-125 was 234. When I finished on November 9th, it was 74. The chemo had not stopped my Pleural Effusions and I had to have two surgeries in December 2006 to seal the lungs. The surgery was a success.

I am taking Avastin on the Clinical Trial, but my CA-125 is up to 430. The thing is I feel good. I am back to work a few days a week. However, now I have fluid buildup in my abdomen. They call it ascites. I will have a CT Scan next week and will have it removed for the first time.

My Doctor tells me there are many options for us. Stay positive and live everyday with happiness. It is tough watching my loved ones around me. I think it is harder on them than me.

I have talked to many women who have lived years with Ovarian Cancer and they tell me to never give up hope. My number one question is Am I doing everything that I can be doing. Any suggestions or questions, please email me and enjoy life.

Jan

My mother, Patsy Beck, was diagnosed with Ovarian cancer in October of 2004. At first she responded well to treatments but remission did not last long. She battled the disease for approximately 19 months. She carried herself with dignity,and faith and fought courageously. My mom was my best friend, and I am so very thankful for the years the Lord allowed her to be in my life. Her selflessness and unconditional love are treasured by myself, my 2 sisters, my dad and her 9 grandchildren and 2 great grandchildren. She went to be with Jesus on June 1, 2006 at age 63. I will see you in heaven someday Mommy. God bless all of you who are battling this desease. I so admire your strength and courage. God bless you all. And to my mommy, I'll love you forever.

November 12, 1988 I got a call from my sis in Kentucky. "I have stomach gas and looks pregnant. My doctor gave me Pepcid." "Go back to the doctor for more tests." She did and was scheduled for surgery in 4 days. I flew back to be with her. Arrived the day before her surgery. She looked 9 months pregnant. Remembering back I was visualizing Donna placing her hands on her lower abdomen while walking and complaing of discomfort. And now she was living in Fulton, Kentucky and working in Paducah Lourdes Hospital as a medical transcriber. The next day her Ob-Oncologist surgeon debulked her. 3,000cc of fluid came rushing out of her abdomen which sent her Blood Pressure rushing to the basement. She looked dead. The cancer was spread everywhere and was very aggressive. Doctor said it was like little kernels of corn and had seeded itself everywhere. Was in Intensive Care for 3-4 days and finally put into a regular room on the surgery floor where I was given a cot and able to sleep and be with her at all times. She was scared to death. She wanted to come home to Washington one way or the other. So Mom and I made arrangements for her to see an oncologists in Bremerton. First visit was Dec. 15th 1988. He said she could have Christmas and then start Chemo the end of December. They would do chemo for 6 months and re-open her abdomen. Never got to that stage. The chemo just about killed her. weight loss, no appetite, and so much fear..vomiting..it was ugly. The transcribing she had done had finally hit home for her. She knew how bad it could get. Well, the oncologist stopped chemo in May...Fluid came back..cancer now in lungs and growing out of her rectum. I stayed with her in the hospital. She went in for the last time October 5th and died October 29, 1989. This cancer was sneaky. We have a family full of cancer. I have breast cancer and get checked for ovarian (ca-125), Dad died of breast cancer that had spread to his bladder and bones, his mother died of ovarian cancer in 1956, my aunt on dads side has breast cancer, and on and on.....Now my daughter is having symptoms of ovarian cancer and won't go to the doctor. I have to respect her wishes. I hope this writing helps someone out there but it is such an ugly subject don't quite know how it could help. thankyou for listening. Donna's sister, Dianne

I had an ultrasound done today that revealed I have an ovarian mass on my right ovary. No fluid was found in my abdomen. I also had a CA125 drawn today after I got home and called my GYN office. I told them I was very scared and they sent me to have one drawn right away. It is a solid mass, about the size of a ping pong ball. I am a nurse and I called my doctor that I work for right away. She reassured me that everything will be all right and that there was no fluid in there and that was good. I do have a long history of endometriosis. I just want to write that I am so scared. I lost my husband when he was 40 years old to brain cancer. I feel so alone. My son is in prison and my daughter is married and has a life of her own. I lost my mother to liver cancer 5 years ago. My dad is 81 and lives so far away. I'm scared. Someone please talk to me..........

My sister had ovarian cancer for a year before she was diagnosed with Stage III, she had surgery with lots of lymph nodes and the tumor the size of a softball removed. She then had chemo. One year later, the cancer was back, they took out more lymph nodes, more chemo. Since last August of 2006, her count has gone progressively higher. She had a CT scan in December showing possible spleen and stomach affected again. MRI in Jan. of 2007 proved this. She is waiting for the doctor to make up her mind what she will do. We are very close and this is devastating. I am a breast cancer survivor of 3 years. I pray for her and other cancer patients everyday. It is horrendous that this is so common among women.

Lillian Ruff

First of all, I had regularly visited my doctor and complaining of fluid retentions and major bloating. However, she ignored these almost completely until finally she was out on maternity leave, and was flabbergasted with the increase in weight and bloating I had when she returned. I was sent to the hospital where I had a gallon of fluid extracted and was admitted after that.

The extraction of fluid was done again in a few days and another gallon of fluid was extracted and checked for content of cancer cells but none were detected. In the meantime, I was getting the fluid right back in no time and finally, the group of physicians diagnosed that I had ovarian cancer. I was immediately scheduled to see an Oncologist Gyn and put on chemo. This was all taking place in my hometown, the chemo that is, and I had an appointment with the Oncologist Gyn in May and all of these started in February. I was admitted to the hospital for preparation for surgery on May 19, 2003. I had a complete hysterectomy and lost 54 lbs overnight. I had an enormous amount of fluid on by then and after 6 days in intensive care unit I was transferred to the normal ward and was sent home two days after.

I had a total of 25 treatments of radiation, 6 weeks after surgery, and have survived cancer free for almost 4 years now. I have had regular checkups with CT scan each year, CA125 tests every three months, and chest x-rays every 6 months. I just had a check-up Jan 23rd and was given a clean bill of health again for which I am thankful for. I will be cancer free for 4 years in May 2007.

This is a success story up to this point and I am pressing on gratefully. I had a wonderful doctor and with the grace of God, I am still living after a horrifying experience. I have a friend who has gone through the same events as me and she was just three months behind me in surgery with the same doctor and hospital and she’s still managing to stay cancer-free. We stay in touch weekly and are both very thankful. I had stage 3 cancer and she had stage 3.9 they say. Success is our stories to this point.

Sincerely,
Evangeline

"From what we get we can make a living; what we give, however, we make a life" -Arthur Ashe

It all started on the day after Mother's Day in 1997, it was a day that life as I knew it, changed completely. I was living a typical 16 year olds life, when my mother broke the news that she had Ovarian Cancer, I along with my sisters and step dad were shocked and as you can imagine devastated. My mother was the strongest person I had known, so there was no way that she could suffer from this disease. As the days passed I realized that this disease was for real, my mother went through extensive treatments including chemotherapy. As a result, she began to feel as if the world around her was beginning to change, her strength was not there, her hair was gone, and she was beginning to lose her faith in life. Even so, she never lost her heart. A few months passed and she was "cured" from this horrible disease. We planned a trip to Yosemite National Park and we all went as a family, there she received a call from one of her physicians. I remember watching her as she spoke to him and the second when she received the news that her cancer had appeared in other areas. She broke down and cried like I had never seen her cry. We did not know what had happened, but we had an idea. A few months later she was admitted into the hospital (ICU) where she lasted a month and passed on February 9, 1999. She was and will continue being my life, with her passing she has taught me how to appreciate life and every moment that is before us. Although, I miss her every day, I also know that she has and will continue to show me that life is nothing without love. Even though this story is not your typical feel good story, I guess I am saying that it should be. Through my mom's passing I have learned to appreciate life and every moment it consists of. Mom, you continue to be my hero,idol,mentor, and most of all teacher. I Love You Mom!

I am going to start by telling my story. I know individual stories can be redundant so...if you want, just skip down towards the end to read what I really want to say!

I took fertility drugs, never gave birth (adopted my beloved daughter), and had a history of pelvic pain. Realizing I was at risk for ovarian cancer with the first two factors, I had always been pro-active with yearly ultrasounds and watching for little signs. I told my gyn about my fear and he said not to worry, there was no proven link to fertility drugs and ovca.

One year, a septated or complex cyst on my ovary showed up on the ultrasound. I was devastated to read on the Internet that these type of cysts could be the genesis of an ovarian cancer and had to be further evaluated. I spoke to my gyn and he said not to worry, he was certain it was just two cysts together and they are rarely cancerous anyway.

Eighteen months later, tired of the pain, the heavy periods, and most of all the worry of cancer, I requested a hysterectomy from my gyn. He said, "the chances of you having serious complications from surgery are far greater than your odds of getting ovarian cancer". I was lulled into complacency.

Six months after my hysterectomy request, the pain got worse. Thinking it was my stomach, went to an internist, and she ordered a CT. CT showed two large bilateral masses on each ovary. I was ordered back to the gyn who took an ultrasound and told me they were "pedunculated fibroids" or uterine fibroids on stalks which floated out of the ovary. I don't know who is a bigger fool: him for suggesting it or me for buying into it.

Anyway, after a follow-up ultrasound, 4 months later, the "fibroids" on my ovaries had grown so fast that he told me I had to have a hysterectomy and only then did he order the CA 125 test which was 3170! The end result was "apparent stage 2b but possibly borderline 3a ovca".

I opted for the IP delivery but could only tolerate two doses out of the six. The remaining four were infused. I finished my last treatment just over six months ago and feeling much better. On my last visit my CA 125 was down to 4. I pray it stays that way.

The moral of my story if your reading this and don't have cancer:

1) think twice about fertility drugs. Their link to cancer is very strong but none of the doctors who treat infertility will ever play it up...there is just too much money to give it up.

2) Investigate thoroughly all complex and septated cysts. OVCA in stage 1 is completely curable 95% of the time!

3) Try to see a gyn who is not delivering babies-otherwise they are so caught up in being the heroes in the maternity wards that they still have their head in the clouds when they have to see woman presenting with health issues.

4) Don't JUST listen to your body (we all know or have heard ovarian cancer whispers) make sure the doctor is listening too. Don't get lulled into the "great, the doctor says I'm ok" mode like I did.

5)Get yearly ultrasounds AND the CA 125. Lie and say you have pelvic pain if that is going to get them to agree to the test! Hopefully, one day ovarian cancer will get America's attention as (thank God!) breast cancer has we won't have to connive to get tested. As of today, however, other than the "ovarian cancer whispers" message (not sure how powerful or useful that really is anyway) there is nothing.

For all of you surviving out there...keep up the great work! I feel all of us affected by this bastard disease have a cosmic kinship of some sort. We are all members of the same club, shaking our heads and wondering how we got here, but nonetheless, here we are, ready or not, each trying to get by in our new skin, our new persona as "person having ovarian cancer", the best we can. Although I have a great support system, no one but no one, as I'm sure you can all relate, can understand how this feels...to be stripped of so much, so fast.

That being said, I resolve to live my life to the absolute fullest, love everyone a little bit more, be kinder, appreciate nature, strive to be as stress-free as possible, appreciate and take care of my body after all it has had to endure- through nutrition and exercise, and thank God daily for all my blessings.

To each and everyone of you with ovarian cancer who is reading this....A GREAT BIG HUG, SISTER!!! We can do this!

I am 39, and 3 weeks post surgery, and am so thankful all of you have posted your stories.

I had been having a twinging pain in my right side for nearly 18 months. My father died of kidney cancer 7 years ago....so I had been asking my general practioner "could it be related to my kidney?" I also had high blood pressure as well, even though I was a healthy, young person. After switching doctors, the new Dr ordered a CT scan of my abdomen/kidney. June 2006, Kidney was clear, they noted a 3cm cyst on my right ovary "insignificant" on the CT scan.

Summer 2006, I experienced symptoms of gastrointestinal stuff throughout the summer. Still the twinging side pain...just an annoyance more than anything.

November 2006....I started noticing my belly getting rather large, and a full-bloated feeling...it was firm. I looked like I was pregnant. I also developed back pain...just more of an ache....and I always woke up with my whole back slightly aching...like it was my old mattress or something. I also was constantly dealing with indigestion/acid reflux.

Mid-November 2006....I experience three days of rather excruciating abdominal pain...it was rebound pain, like I had felt before, when I had my appendix out a few years ago. I finally, after 3 days of this, went to the ER. They did not order any tests, told me it was probably constipation (because I had not gone during the three days), or possibly a ruptured cyst. They sent me home with a laxative and pain relievers. I did feel better after a few days.

I started researching the internet for my symptoms. I came across all these stories, and other links, which all seemed to link these symptoms to ovarian cancer. I was feeling scared, and did not want to pursue it. I finally thought, well, I'll just get my "annual" pap exam out of the way a little early, and make sure I'm okay.

Mid-November 2006....I have my OB/GYN physical. She does palpate a mass on the right side. Sends me for a transvaginal U/S. Confirms it is a 6cm complex mass on the right ovary. They note the same 3cm that was on the CT scan in June. They decide to wait another cycle and recheck it. December 2006....it is unchanged and solid/complex. I am sent for a CA125, it comes back 48 (normal range is 0-20).

December 29, 2006...I am referred to a GYN/ONC for surgery. The surgery is scheduled for a week later. Everything is moving so fast...it is the scariest thing to be waiting for the actual surgery to be over, and so much anxiety about cancer.

January 8, 2007....Surgery removes a 6cm solid "endometrioma" which had adhered to the right abdominal wall, and spine, and performs an oopherectomy for a dead-tissue ovary. Pathology while in surgery, comes back.....Not Cancer! I was praising God, as I know from reading over and over....it is not always this outcome with these symptoms.

The November visit to the ER was because the tumor had twisted on my fallopian tube and cut-off blood supply to my ovary. The appearance was solid, because of the blood/dead tissue inside from necrosis setting in.

I just want to say to others that are reading here....there are little signs our bodies are telling us that something is not right. Don't feel like a hypochondriac, and get them checked out! That dead/infected tissue could have become cancer, later down the road. It is better to have things checked out, if you think it could be something. Don't wait. Your outcome may even be positive! And I feel so much better, now...no more back pain, no bloated stomach, etc.

To those of you who are dealing with this disease....I am so proud of you for sharing your stories, and for being strong to fight this, and hope and pray that technology will hopefully, one day soon, bring a cure and better measures for early detection. God Bless you all, and don't ever give up.

Hi my name is Angela. And I would like to share my story. My mom was diagnosed with OVCA last year 2006. It just all happend at once. We were preparing to go to our family reunion and my mom became very ill. She was vomiting and she had a bad case of diarrhea so she was taken to the doctor. The doctor stated that her uterus wall had fallen and he need to pull it up. Upon going to the hopital, she was still nauseated and feeling extremely bad. Then the doctor said she had the signs of gallstones. A test was ran and sure enough she did need the gallstone surgery. The surgery was done and very successful. They removed gallstones and the gall bladder. Upon removing the stones and bladder the doctor notice a lot of water. They removed about 2 pints of water from her adominal. The doctor then had the water tested, which showed positive for OVCA. My mom was 72 years old at the time. As I write this now, my mom is in the hospital and has been there for almost 3 weeks. The chemo that she was on for the first year her body started rejecting it. She was later put on Doxil. This chemo was too strong for her and her body was not able to handle it. While doing Doxil my mom became very dehydrated and nauseated. She could not hold anything down. Her doctor recommend that she be put in the hopital so he can run test to find out what was going on. Several test have been ran and he still cannot find out what is causing this. Right now my mom is hooked up to alot of iv's, she has swollen feet, and she is still continuing her chemo treatments. My mom is a strong woman and she is fighting hard. But through all of this I can truly say God is good. Prayer also changes things. About 2 days ago my mom start back eating (just a little at a time) but the food is now staying down!!!! She lost a tremendous amount of weight. Her feet are still swollen. She also has to do physical therapy while she is in the hospital. I hope one day they find a cure for this silent killer. This does not only affect the person with the disease but family members as well. I just want to say to everyone who is dealing with this or any other type of cancer. KEEP THE FAITH AND KEEP GOD FIRST. BECAUSE GOD HAS THE LAST WORD!!! PEACE

Angela
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My name Is Linda Pignatiello. I live in Ohio. I was dx at age 34----what a shocker, I thought it was an old lady disease. Then I knew its What Gilda died from. I'm currently a 12 year survivor. Just finished fighting my fourth recurrance. I'm Stage 3B Epi.

I really had to get used to the new normal life after cancer. I've done many chemo trials. So don't be afraid of that. I have no secret weapon. Just keep the faith, have a positive attitude, and make sure you feel comfortable with your healthcare team.

I feel knowledge is power against this beast. So I try to find everything and anything out about ovca and its course of tx. Be part of your healthcare team. I've learned from support groups, ACOR list on-line, CONVERSATIONS, GCF, and OCNA. Have gained many valuable friendship thru these also.

I do lots of CAD. Reiki, guided imagery, tai chi, music and art therapy. May we all dance long with NED! I didn't sign up for cancer, but being a teal sister is best! Be well!

My mother was a wonderful person. She was officially diagnosed with ovarian cancer 1 month before she passed ( which was september 2 2006). She was admitted to E.R. 1 week after thanksgiving 2005. She had been sick so she didn't come to thanksgiving and no one had spoken with her for 1 week. We called and never got her so we sent a friend who found her unable to walk, focus her eyes or speak clearly all of this in a matter of 2 weeks. I had noticed when I talked to her before thanksgiving her speech was slurred but didn't know what to think of it. When she was in the hospital they suspected everything from meningitis to just extreme malnutrition. She was tested just about everyday for just about everything from the time she was admitted to when she got out 2-3 months later. She never did walk again or speak clearly or even completely focus her eyes. She was discharged to me with the diagnosis of Paraneoplasy cerrebellar Degeneration- what it broke down to was her own antibodies were trying to attack cancer and misfired killing her brain cells. Her brain cells would never grow back and because antibodies don't leave your body we'd never be able to know whether or not they were still atacking except for by watching over time. But they suspected Ovarian Cancer and we weren't sure whether or not she could handle surgery to remove her ovaries at the time. She had told me she lost 20 lbs and was tiny to begin with. So when she got to the hospital she was about 68 lbs soaking wet. All her motor skills were shot even swallowing. Since she had a hard time swallowing we put in a g-tube before she was discharged home. She was very weak. I took care of her with the help of ocassional nurses, medical equipments and friends. We went to her primary care, neurologists, and an oncologist (Dr. Harrison Ball- a great guy) regularly. She was on all different pain meds, nausea meds and vitamins. We kept doing pelvic MRI's and couldn't see her ovaries well. The only choices were watch and wait or get a lapriscopy remove the blurry ovary and possibly a full hysterectomy. We went for it and they ended up doing a complete hysterectomy and found cancer cells on the inside of her ovary. Dr. Ball did biopsies from all around her chest cavity while he was in there and they all came back negative. We thought all we had left to do was deal with an extreme handicap the cancer was no longer a problem. A week after she got home from the hospital she got a customized wheelchair so she wasn't always bed ridden. She went back to the hospital about 2-3 weeks later for a follow-up and it turned out there were cancer cells on the outside of her right ovary. We talked about chemo and whether or not she could handle it. He told me to call him back and let him know the next week what she wanted to do. I was her healthcare proxy but I would never of made her do anything she didn't want to and she decided she didn't want to she'd been through enough. We went to see her neurologists and they said she looked good. She died at home less than a week later. I don't know why. The medical examiner denied her and said natural causes. On her death certificate it said respiratory aspiration. Every once in a while she would sleep for a whole day, day and a half. I didn't bother her so I'd wake her up occasionally for her pain meds and maybe to change her or clean her up. She was completely dependent. She couldn't even roll over and get comfortable on her own she'd call for help. She was sleeping for almost 3 days straight before she died. Me and my younger sister had been talking about it bc I worked full time so while I was at work she cared for my mother so we weren't really sure 'til we spoke how much she was actually sleeping. It worried me a little but I figured she was tired from the new wheelchair and being up in it. I woke up at 3:00a.m. on September 2nd. I went in her room to check on her and she had brown throw up on her mouth and clothes. So I cleaned her up and gave her pain meds. I was real worried because all she had was the feeding tube formula, which was sort of yellow, to eat and she'd thrown that up many times before so I knew what it looked like. I got her comfortable and went into my room and turned up the baby monitor so I could hear her just in case. I heard nothing. And I was a very light sleeper since I started taking care of her I knew she called in the night. I got up in the morning and made breakfast for my nieces (8 and 6), 2 sons (10 mos.and 3), and nephew (2). I saw her pillow out of place and went to check on her and realized she had passed. I'm only 21 years old, my sister's 17, I have 3 brothers- 26, 23 and 20. My mom had 3 granddaughters and 3 grandsons. She wasn't supposed to die yet, my youngest was born about 2 weeks before she got sick. He'll never know her. Her case was extremely rare. And extremely painful. We need more research done, better testing, earlier testing. What hurts most is I'm not religious so I don't know where she is. She wasn't really either she believed in God but toward the end resented him. Someone said god bless you when she was sick, she said,"F*** your god look what he did to me!"

My problem started in Oct 2004, and of course I ignored it. In April 2005, my husband had to go in the hospital for he almost had his third heart attack. In June, my son had an emegency appendicitis. I knew then that I had a knot on my side. In August, my 4-yr-old granddaughter had her tonsils out and I remembered lying in her room that night with a feeling of a mass in my stomach. However, I took care of everyone else before I took care of myself.

My mom would tell me occasionally that I should to go to the doctor because I would have pains in my stomach and I wasn't looking very well, so finally in Nov 2005, I made an appointment with my doctor. I was scheduled to see her on Monday, but when I got home from church on Sunday night, my left foot was so swollen. I propped it up and it got better. When I went to see the doctor on Monday, it was supposedly for a bladder infection, but I did mention that I had a knot on my side. She felt it and have advised that I should get a sonogram. I could tell she got very nervous. Anyway, I've made the appointment for the sonogram the next day. I asked her then if she thought it was cancer and she said it was. She was worried and I became very nervous. I went to pray that night at a prayer service at church.

The next day I went for the ultrasound and the supervisor have told me that I should get a scan. But before I left that day, my doctor said this thing was big. So I was really scared about the scan, and really debated on whether to have it or not. I talked to my brother David and my Mom, and I was so scared but I finally decided to do it. I went and drank the stuff I had to drink and went home and drank some more and then I went back and had my scan. The scan was supposed to have done my abdomen only but instead it went up to my lungs and scanned them. I realized now that God was the one that made that machine to my lungs. I left and dropped my mom off at home but my husband met me by the door and told me that I needed to go the emergeny room for they found blood clots in my lungs. So I went to the ER and was admitted to the hospital and one doctor told me that the mass was like a 35-week fetus. Anyway the oncologist gyn was called in the next day and he examined me and told me what he was going to do. But I had to wait a week while I was on blood thinner for the blood clots. That was on Nov 22, 2005. On Nov 29, 2005 I was operated on for a complete hysterectomy and they found two masses that weighed 4 lbs. a piece, and took out four inches of my intestines that the mass had laid on, and had damaged, plus they took out my appendices. He also found out that I had ovarian and uterine cancer. My doctor, Dr. Pippitt, was sent by God, because I was scared that day when he came in my room. But when I went to surgery, I wasn't scared anymore, because I know God and Dr. Pippitt were on my side. It was a 4-hour surgery but I came through it even though I had to have 7 pints of blood before and after surgery. I was in the hospital for 16 days. I came home Dec 8, 2005 and in Jan 2006, I had my first dose of chemo. My last dose of chemo was June 2006. That was not fun. On Oct 3, 2006, I had to have hernia surgery, and while they were fixing that, Dr Pippitt took samples and sent them off to see if there was any cancer. On Oct 17, 2006, I was declared cancer free. I feel great!! I thank God and Dr. Pippitt for everything they have done for me.

My name is Sande. I'm 17 years old and was diagnosed with stage 3c Ovarian Cancer.

On May 28, 2006, I graduated from high school. My family was so proud. A couple of months after that I started noticing changes with my body, bloated abdomen, menstrual changes, upset stomachs, etc.. August 4th, I went to a gyn and they sent me to do an ultrasound which showed a large mass in my whole abdomen. September 12th, the mass was removed. It was apprx. 24cm x 20cm x 10cm. They gave my family the news right after surgery that the tumor was malignant. However, there was another mass that they were unable to get due to the location and that we would need to begin chemo after healing from the surgery, to shrink the mass. In the meantime, we waited for me to heal and for the pathology report. Ten days after my surgery I seem to be doing worse, I couldn't sleep, the agony was horrible, so I went back to the doctor. Another ct scan showed the mass still in my abdomen was causing complications. The pain was unbearable. The doctors scheduled a procedure to help for the following week. But at the beginning of the week I had an appointment with the oncologist. When he saw the amount of pain I was in, I was admitted. That same day, the pathology report was read to us, verifying the cancer. I cared and I was so scared, but the amount of pain I was in was over-riding those fears. So 2 weeks after my first surgery, I was admitted to the hospital.

I learned alot about this cancer, how silent , aggressive and deadly it is. I knew I was too young to have it. I knew my chances were not very high even though my family or the doctor never came out and said it to me.

A couple more surgeries over the next couple of weeks, didn't help. The cancer had just spread too far, too fast. I, Sande Dawn Jordan, on October 11th, 2006, lost my battle with Epithelial Ovarian Cancer. By that time I was happy. Happy because I lived the life I had, and I was at peace, because I knew Jesus and others were waiting for me.

Remember my name and my story, not as a story to bring spirits down and cause less hope for those of you still living through the same thing, but remember me for yourselves and everyone else, stressing the importance of getting the message across on this cancer. To help in the research for earlier detection, or even better a cure. Most importantly, placing awareness out there so women can be informed on this cancer, symptoms, detections, and hopefully one day prevention.

Remember me, Sande, because one day my foundation will be out there to help assist with the studies of ovarian cancer. You will hear of it, one day......

My name is Debra and I was diagnosed with Ovarian cancer September 21, 2005. I underwent surgery and found that my cancer was contained inside a cyst. It was stage 4, but the strange thing was that my ovaries were normal. They removed them and I went through 6 rounds of chemo. I was just wondering if anyone has ever had a case like this - my doctor tells me that it was strange. Please respond if you know anything about this.

It is a true statement that trials come to make you strong and God will not give you more than you can handle. My mother Vanessa (also known as Renee', Nessa, or Sister) is a social worker for an Institution for the mentally challenged for over 20 years. She loves her profession, because she loves working with and helping others. Many of the residents family members have treated my mom as if she was their own loved one. My mom also loves her church family. Being an Elder in the ministry, my mom ministers with comedy/simplicity. After being saved since 1975, she accepted her call into the ministry in January 1993 as an Evangelist. Working in the ministry was her greatest joy, witnessing to others about the goodness of Jesus, Love of God, and the gift of salvation.

Her desire was to see her family and friends accept Christ and live a life pleasing to him. My mom is a mother of two girls and 7 grandchildren. She is a graduate of VSU with a Masters in Sociology. She has spent the last 20 plus years of her life working in the ministry.

In April of 2005 after 5 months of being terribly ill she was diagnosed with OVCA Stage 3C.

At the time of her diagnosis, I had NEVER heard of Ovarian Cancer. The five months prior to her diagnosis, she had experienced severe abdominal pain, constipation, body aches, bloating, and very little appetite. She was misdiagnosed several times with IBS. After being treated for IBS, she found no relief in the medications and went for a second opinion. While awaiting the appointment for the second opinion she was seen in the Emergency Room three times in one weekend. She was referred to Johnston Willis Hospital where test results showed OVCA.Her CA-125 was well over 6,000. We were devastated. All all-points prayer ALERT was sent out throughout our community. I do not think I have ever heard of sooo many people praying for one person. God is good. A date for surgery was set, and my mom put her hands in God hands. Debulking surgery was done 4 days later and there were two large tumors removed. Following the surgery she had to wear a colostomy because of the damage caused to her colon

by the tumor. A second surgery was done for a total hysterectomy. Chemo began three weeks later with her first round of carbo/taxotol. The cancer count began to drop from the hundreds to double digit numbers. We praised God!!!

Throughout the first six months of this ordeal, people everywhere had rallied around my family to pray for the healing of my mother. Cards poured in from everywhere with believers/non believers praying and trusting God for a miracle. The Dr.'s had informed my family that my mom was a very sick woman and if we were any later getting her diagnosed she would'nt have made it. My mom began to quote.."See Tee I am still here."

Over the next couple of months my mom had several changes to take place in her health. Chemo made her sick and unable to work most of the time. In her spare time she would minister to those she came in contact with, and use her personal testimony as a foundation to display the "Love, Grace, Mercy, and the Goodness of God". She also used every opportunity to share awareness of Ovarian Cancer. Her lapel usually was accented with a teal colored ribbon.

In the beginning of 2006, my mom's body began to resist the chemo, her chemo was changed to Cisplatin/Gemzar. We were told that it is the strongest Chemo they had for her. After her first round of cisplatin, she was up and running, driving her new car, visiting the sick, attending 5 am prayer service, and using her time to minister to others, and enjoy the company of friends, fellowship with co-workers and attend Bible Study with me at my church. In March 2006 she was awarded Covenant Sister of the year at her church and given a crown. She had the opportunity to minister at A Women's Conference in March. Her body afflicted with a fever of 101, she ministered anyway. Delivering a powerful message from the book of Esther.

After receiving numerous reports that that her body was not responding to the chemo, we still continued to TRUST GOD that he would heal her and deliver her from this infirmity. Chemo was changed to cisplatin/Gemzar and there was still no change.The Ca-125 count continued to rise. A prayer group in Richmond VA began to fast band pray weekly for my mother's healing. Members of my church & (no doubt) my mom's church began to stand firm on the word of God that Elder Marshall would be healed. In mid-April the tumor then produced a bowel obstruction in April 2005, which resulted in a peg-tube for drainage.

Because of the peg tube, my mother was only to have clear liquids for her diet. I remember telling her..One more challenge, one more miracle..She called me her cheerleader.

Three weeks after this she began having complications with the peg tube. She began to vomit several times a day. My mom lost so much weight, and most of her strength, but not her faith and trust in Christ Jesus. The more medical challenges she faced, the stronger her confession became that "God will do what he said he will do". As of today's date, my mom has been hospitilized for 23 days. She is now on oxygen, has a drainage bag for for the ascities, and is taking morphine to ease the pain. Family, friends, co-workers, and other believers embrace her with the Love she has displayed and generously given to them over the years. Her hospital room has been used a place of ministry, where you can feel the presence of God, even in this challenging time. Many come to pray and support her, and she in turn prays for and encourages her visitors. Her dream to begin a Cancer Awareness & Christian Support group has already began within the room in the Womens Health Unit of JWMC.(Hope) Helping Others Patiently Endure) Her window is filled with cards of prayers, scriptures, and love, while another window is filled with beatiful flowers. The gyn-Onc Dr has told us that he has done all that he is able to do. At this point my family is making arrangements for my mom to have Hospice. Although we do not know what tomorrow holds, we know who holds tomorrow. Many lives are being touched right now by the ministry of One of Gods Messengers, Elder Vanessa R. Marshall. Even in the face of hardship you will hear her hum or sing "Oh how I loved Jesus..Oh How I love Jesus..Oh How I loved Jesus because he first Loved Me." I cannot say I will not miss my mom, I know I will. We have come a long way in the past 6 years. God has restored a broken relationship and made it into a beautiful centerpiece of the Works of the Masters Hands. We do not look back at what we could have had, but what we are able to enjoy whenever God calls her home. All I can say is that God doesn't make any mistakes. Within are many unanswered questions, maybe to be answered, and maybe not... In this entire ordeal with OVCA I have seen God's mighty hand move in so many ways. I pray for all those who have lost a loved one with this horrible disease. What makes it so horrible is because it is silent, the symptoms whisper...you can be easily misdiagnosed, and when you find out the dignosis, seldom times, it is already spread. My prayers are with you all. We cannot thank God enough for ALL those who have prayed, supported, encouraged, and embraced my family in this last year. I know God has a special reward for you all. Especially the women of the OVCA Message Board who check-in to be a shoulder to cry on, and to share information that you may not recieve from the doctors. May God bless all the survivors of OVCA, Caretakers, family members, and Onc-Gyn doctors who (those who do)do ALL they can for their patients. We believe that if God doesn't reveal the manifestation of my mother's healing on this side, that we will witness her healing in Glory! She is running the race, fighting a good fight, and she is enduring in grace and with patience. I know she will hear the Master say Vanessa...Well done my good & FAITHFUL servant..Well Done. Please keep us in your prayers.

The Brown, Marshall, and Johnson Families

UPDATE:

On June 12, 2006 at 10:10 p.m., the Lord in his infinite wisdom called home one of his own messengers, Elder Vanessa R. Marshall. After a fourteen-month battle with Ovarian Cancer stage 3c, she ran the race, she fought a good fight, and now a crown of rightousness is stored for her. God knew what was best. The Lord used her hospital room as a place of ministry as she ministered to all those who entered her room. Lives were changed by the grace, compassion, and love displayed by Elder Marshall. Even while she was too weak to speak, when she did have the strength she hum or sang "Oh how I love Jesus". She made an effort to minister with the power of God, and the presence of the Holy Spirit. I do not know what tomorrow holds, but I do know who holds tomorrow. Elder Marshall leaves a rich legacy for her children and grandchildren. She has left precious memories for those who knew her. The Lord used the people of God to provide round the clock care for Elder Marshall. She was given back all that she had given to others. Special blessings upon those who sacrificed their time to sow in the life of this great woman of God, my mother aka V-butterfly.

Donations may be made in lieu of HOPE:

Helping Others Patiently Endure, a Christian Cancer Support Group 49 Walnut Blvd. Petersburg,Va 23803

My ovarian cancer story started on a brilliant California Halloween day in 2002, when fatigue and a mild increase in abdominal girth brought me into my internist's (or as I call him "My Savior") office. I'd just celebrated my 30th birthday the week before, and was in the best shape of my life. I'd been training for the LA Marathon, was up to 16 miles at a time, and couldn't figure out why I was gaining weight. He felt a mass in my right lower quadrant and sent me for a pelvic and transvaginal ultrasound, thinking it was probably nothing.

Bilateral echogenic masses on the ultrasound sent me strolling (still not worried) to the OB/GYN's office. He thought it was probably endometriosis and suggested waiting a few months and watching it. I've never one to stand up to doctors (except the ones I work with...I'm a nurse), but a little voice told me "waiting and watching" just wasn't good enough. Since I wanted to try to get pregnant after the marathon in March, I asked that he do an exploratory laparoscopy to get a definitive diagnosis.

The GYN came out of the OR the morning of my laparoscopy and told my husband that I had dermoid cysts (nasty little bunches of rampant hair, nails, cells) but they were too big to be removed laparascopically. He biopsied the one on my right ovary and sent it off to the pathologist.

The next day, two days before Thanksgiving, I got a call from my GYN's partner (he was out of town for the holiday). All I remember from that day was writing out the words "serous papillary carcinoma" as we were on the phone, and knowing my life was about to completely change.

I was staged a 2c, and will always be grateful to my internist for the fact that it was diagnosed as early as it was. The next 6 months were a blur of surgery, chemo, tears, laughter, not having to shave or buy hair products, and finding a newfound peace and acceptance with my life and the world around me. I've been in remission for 3 years, and I have days when I don't think about cancer at all...not even once.

I never got around to running that marathon, but each day that passes that I have on this Earth, to spend with my family and friends, to help people and be a voice for those who aren't as fortunate as myself....each day is another step I take in a much longer and more important race...one that I'm determined to win.

My mom was dx Stage 111B Dec2000. She had total abdominal hysterectomy and omenectomy. Chemo taxol/carbo for 6 cycles then topotecan. She had DVT and blood clot on her inferior vena cava. Treated with Coumadin for 2 years. Complete remission until June 2004 Ca125 began rising. Pet Scan showed one lymph node in groin was positive. Lymph node removed, 6 weeks radiation and weekly carbo. Became sensitive to carbo and switched to weekly gemzar. Ca125 lowered to 20, began elevating Feb 2006. Pet scan April 5,2006 showed small spots on intestines. Started Doxcil, and received 2 doses. Last weekend had severe constipation unrelieved, then went to ER. Intestinal obstruction underwent surgery on thursday, June 1st. She now has colostomy and fistula. Three tumors were not resectable. Plan is for PICC for nutrtion (she weighs 87lbs and is 5ft 4in). My mom is a trooper, wants chemo ASAP and trying to convince oncologist to go with platinum drug with premeds so she doesn't react.

Initially my mom had GI symptoms; heartburn and bloating, no appetite. She was told she had ulcer, IBS or gall stones. I fought for a cat scan and she was finally diagnosed. If something is not right speak up, scream and demand testing!!! I have endometriosis and have undergone fertility treatments. I demand a transvaginal sonogram. I'll create symptoms if I have to. I will be screened and not let this silent killer strike again!!

Please pray for my mom. Thank you.

Hello,

My name is Angela B. and my mom was diagnosed with Ovarian Caner last weekend on Mother's Day weekend (May 13th, 2006). They found cancer cells around her lungs in the fluid, and she looks like she is about 9 months pregnant. The doctors all have a positive attitude, but I'm still not sure how she's going to do. She just had a bypass surgery on her heart October of last year (05) because of shortness of breath...we think now it may have been undetected cancer instead of the problem that they diagnosed her as having (a blocked artery of only 60%).

She is 49 years old and has been through chemotherapy once in 1995 for breast cancer. She's a survivor of 11 years for that. A very strong and religious mother of four wonderful children and four grandchildren, newest is now 10 months old.

With her first treatment being last week she's very, very tired and suffering from depression and anxiety. I'm really worried about her and I know all there is to do is to be very supportive and to pray very hard. They are going to give her 6 chemo treatments first (one every three weeks), then check the tumor(s) and then if necessary debulk or resume 6 more treatments. She's had so much abdominal ascites; they say surgery would be nearly impossible at this point anyhow. Chemotherapy should dry some of it up. If anyone has had similiar stories I really want to hear about them. I would like to know things to expect and also someone to relate to. Please E-mail me at [email protected].

Thank You,

Angela B.

Hi my name is Kimberly. I am 24 years old. I was diagnosed at the age of 23 with stage III B of ovarian cancer. WOW 23 years old some people say. Yes 23. I have my whole life ahead of me. I married, no children, just learning of to live life, and BAM. I went it to my doctor because I was having awful stomach cramps. So my doctor says ok Kimberly lets examine you and see what’s up. So I get a pap smear, afterwards he sends me for an ultrasound. I’m really scared by the time I go to my parents where my mom tells me everything is ok, I might just have a gas build up. Well my mom goes with me to the doctor's office to have the ultrasound, after about 30 minutes of having a nurse push on my stomach, she finally tells me ok we are done, I will send a nurse out to let you know what to do next. While we were in the waiting room, I was told that my doctor wanted to see me right away. So now I’m really scared, my mom goes into the room with me to wait. Dr. Lucks comes in and says Kimberly if you can get your husband home you need to (my husband is in Iraq). So I start to really freak and ask myself what can be so bad that my doctor would tell me this. Well like I said before, BAM the words that would change my life forever. You have a huge mass in your abdomen and we can’t tell what it is. IM SORRY what was that? It was like my ears turned off. He let me know that he already had paperwork typed up with instructions for me to go to the emergency room the next morning to be admitted. HUH? Then while in the hospital, a number of tests would be ran and I was going to be prepped to have an exploratory surgery of my abdomen. OK I heard that part, the first thing to come out of my mouth was “will I be able to have kids?”. Dr Lucks says, "I’m not sure, we will know more once a OBGYN surgeon is in there and can see what’s going on.” I have been going to this man for a very long time since I was young, and it was like a knife was stabbed in his heart to tell me these things. Now how to tell my husband? Well, he is over in a dangerous country, has to worry about his soldiers and his life, well I knew I wouldn’t be able to tell him what was going on so my dad, the brave man that he is, stepped up to the plate. Steven knew that I was having pains, and knew I was going to the doctor so we knew he was going to call. I knew I wouldn’t be able to stay at home by myself that night, so I forwarded my phone to my parent’s house. The phone rings, it’s the call we were all dreading. My dad starts telling my husband what’s going on as I’m sitting in the chair next to him. My husband breaks down, I started to cry again because I knew there was no way he was going to be able to handle being over there and me, his wife of a year, about to have surgery to find out the worst. Well to make a long story short, after a lot of tests and needles, I had surgery the day after I was put in the hospital, 2 days of no food at this point also. The OBGYN oncologist that was called in let my family know while I was knocked out on morphine that it was ovarian cancer and that he would know more once the pathology reports came back. After my sister called Red Cross to have a message sent to my husband, he got to call me but I was so out of it I couldn’t talk. He spoke to his commanding officers and they let him know to try to get letters written stating my exact condition because when Red Cross called the nurses station at the hospital, the nurse has stated that I was in stable condition but I was watched every hour because my vitals were bad. I was on the operating table for 12 hours and lost a huge amount of blood. The Red Cross personnel forwarded the message on to officers in Iraq stating that I was stable and would be out in 2 days. That was never told to them. 5 days later I got out. So my husbands direct supervisor told him there was no way he was coming home on emergency leave. Well 3 letters later and 2 weeks after my surgery my husband flew home on emergency surgery and was able to help me through the awful recovery from abdominal surgery. The oncologist that took over my case was a bit of a jerk and his nurse wasn’t any better. Because I was 23 the youngest they have ever seen they were going to use me as a case study, I guess this meant to them not doing anything about my cancer that the doctor left in me. After 5 weeks of waiting for my pathology report and I kept getting we haven’t gotten the results I found a different doctor in Atlanta, she saw me, saw my case took it to the tumor board with in 2 weeks I was having chemo, and was a lot more comfortable with her. In September after 4 chemo treatments, my blood counts were awesome so she said that it was time to look at doing a full hysterectomy. WOW I knew that was coming but it hit me hard anyway. My husband got to stay home from Iraq so I was glad he would be there for me this time. So I had my full hysterectomy any chance of us having a child is now gone, but the bright side is, IM HERE! And to my family and my husband that means more. I had 3 more chemo treatment, including the study of chemo directly in the abdomen. And here it is exactly a year since my diagnoses and I am cancer free and living life. I have to have tests every 2 months for blood count, I have my first pet scan in January and will have another one in June. That is my story. Kimberly Boer, now 24 yrs. Old My heart is still with you, Doreen Brick, who passed away January 2006, of ovarian cancer.

Dear God: My life is on a strange new path, A detour to my plans. I realize now that all my dreams were always in your hands. You have always answerd all my prayers. You were always on my side. I beg you father hear my prayers and answer one more time. For everything you have given me I am willing to make a trade.For time is all im asking for, just an extra day. For a heavenly day is a lifetime this is what I know. You showed me in my dreams my lord and this is what you have showed. Laughter with my children, lunch with my best friend. The beautiful sounds of the morning bird singing in the wind. holding hands with my husband as we both stand there in awe. Staring at the teal blue sea as the sunset starts to fall. Memories with my family then I suddenly begin to wake. I realize not my chapter in life no one could ever take. Nor the values that I have placed. Im ready now for you my lord to turn to the next page. for whatever you have written my belief in you is strong. Tell me father is this the end or will my days be long?

My mom was diagnosed with Ovarian Cancer 3 1/2 years ago, she had a full hysterectomy and a very large cancer mass taken out, but after six rounds of chemotherapy her CA125 finally went down to normal. She has been in remission for 3 years and two weeks ago we found out she had a tumor on her pelvis and her liver. The doctor performed surgery to remove both tumors and he could only remove the one on her pelvis, he could not get to the one on her liver. She will now start another six rounds of chemotherapy, hopefully to shrink the tumor on her liver. My MOM is truly a remarkable woman and the most loving mother anyone could ask for. She has fought through many illnesses and has succeeded. This is such an unfair disease and I ask myself everyday why it had to strike my mom or anybody's mom, daughter or sister. I pray everyday to GOD to please give me more time with my mom. I am sorry for anyone who has to go through this awful disease.

Hello, I am 43 years old, married with a 14 month baby girl. Over the past 1.5 months I have been having some health problems that I have been trying to get help for and my gny-obs is down playing it all as my hormones must be messed up. I am having vague abdominal pains(dull aches mostly)bloating, and constipated.I also have been having bad headaches. Plus for the past 6 -7 weeks I have had this brown watery discharge every day(24/7), then last week I think I had my "period", it was very heavy and painful(lots of big clots that I never had before). All that my gny-obs did was have my blood checked for HCG hormones and that was 3 weeks ago- she said the results were not back yet. I had my tubes tied 4 months ago. Am I over-reacting to my symptons? I don't want to be a pest to my doctor but at the same time I don't feel right either. Please help me.

When I was 18 I came down with what I thought was the worst flu of my life.

After Easter dinner, I became violently ill and ended up in bed for almost an entire week hardly eating and in extreme abdominal pain. After that week, life went back to normal. I was a senior in high school and I worked in a Nurse Aide training program in the mornings. After school I participated with the Track and Field program.

Months later, I noticed that I couldn’t eat dairy products like I used to. Being a huge cheese and ice cream fan, I looked into being lactose intolerant and I discovered that it can develop as a person ages. I bought some lactaid to support my eating habits and felt better. Around that time, I also noticed pain in my right thigh. Running track, it was easy to do some extra stretches and use a heating pad when the pain struck. Track season ended and soon I felt myself gaining weight- I thought, since my activity level had decreased. It was only in my stomach though, but I’m tall and I had always been skinny, so I honestly didn’t know where my body would gain additional weight. I graduated High School and started my first job. I continued to ignore the extra weight because it didn’t really bother me until somebody asked me if I was pregnant. At that point I felt extremely self-conscious of my appearance. One day, I sat down and felt around my stomach. I absolutely knew I couldn’t be pregnant and I couldn’t believe that I looked like I was in the eyes of my relatives and friends.

Feeling around my stomach, I could feel a definite line directly under my rib cage. I couldn’t push my stomach in and I could trace the outline of something inside of me; a large mass. Fear, anger, resentment, embarrassment, and confusion struck me all at once. I was now 19, working a horrible job with no insurance and I had no coverage from my parents. I continued to ignore it and just hoped it would go away. Because my weight was all in my stomach I started buying loose clothes and nobody noticed it any more. Slowly though, I started to feel worse. After some time, I could no longer walk or stand up straight. I was constantly hunched over in pain. Riding in a car was agony. To sleep, I had to lay on my side and stuff pillows under my stomach for support. The weight of the mass was creating too much pain to bear even when I laid down. Sitting on my bed one day, I made myself think of what could be happening to me. What about Ovarian Cancer? I didn’t know anything about it, nor did I know anyone who’d had it, but my body was telling me something.

The next morning, I woke up in a panic. I could hardly breathe! I called my mom at work and told her that she needed to take me to the Emergency Room; I was going to get dressed while I waited for her to pick me up. That entire day, I never caught my breath. After several tests, the ER doctor told me I had Ovarian Cancer and he had called a specialist in to come and meet with me about what to do. When tears started running down my face, he asked why I was crying. No reason, I said, just that I found out I’m 19 and dying!

I had emergency surgery the next morning to remove what turned out to be a 15 pound ovarian tumor from my abdomen. Its size was crushing my lungs, and my right ovary was obliterated. After some more testing, I discovered just how lucky I was. It was still Stage I and I didn’t have to have any further treatment. My doctors still rave about my history and I will have a very close watch on my health for the rest of my life. I also have an 11” scar to prove that I am a survivor.

My story is similar to many of the other women except that I am younger than many of the women diagnosed and that my ca125 was very high. I was and still am a very active person. I work out all the time and the cancer has not stopped me from doing that or any thing else for that matter. I had almost no symptoms except for some occassional bloating and gas starting around September 2004.

The first week of february 2005 I started to get bloated and each day got a little worse. I went to the emergency room and after an ultrasound I was told to see my gyno. Within four days I was in the hospital for the grand old surgery. I was diagnosed with stage 3c ovarian cancer and I have had almost everthing removed that I don't need to continue living with. The biggest thing is and the one thing that I can't find anyone coming close to is the fact that my ca125 was 50,196 before my operation.

I seem to have broken all the records. The highest ca125 anybody has seen is around 35,000. I asked what does that really mean and they say it just means there was a lot of activity. Of couse I don't think you can believe anything they have to say and I know they sure don't tell you a lot. (They refering to doctors). I started chemo one week after surgery, Feb. 2005 and I had to have 8 sessions of carbo\taxol which I finally finished in Aug. 2005. It took me 5 rounds of chemo to reach remission and since the chemo has stopped I have remained stable. My last ca125 was 20 in Jan. 2006.

I don't want to bore you with all kinds of dread and statistics. I think you just have to keep going and hope for the best. The doctors certainly won't help you beyond chemo. At least not in Canada anyway. I can't say that chemo was fun but I went back to my gym the same week I finished my last treatment and I am as active as I was before the cancer.

I probably don't have a lot of life left. How much I have will depend on how soon the cancer returns but I don't plan on slowing down until the choice is not mine anymore. I am not the most positive person in the world but I am an adventurer, I love a challenge and I am very driven. Finally, I offer a challenge to anyone out there, can they beat my numbers, or at least come close? And if so, how has it turned out? For my first cousin, she didn't live more than 3 years. She also died of ovarian cancer. This is a tough one, this is my biggest adventure yet!

Someone asked to hear from long term survivors. Well, here I am. Diagnosed IIIc in November '96 at age 53, my story is just like that of nearly everyone else....misdiagnosed (IBS and then Fibromyalgia!), I finally ended up in an emergency room with incredible abdominal pain. A gastrointerologist removed the fluid from my belly and diagnosed ovca. My CA125 was under 200.

I still don't know how my biggest piece of luck came about....I ended up with two incredible doctors. An oncologist/hemotologist to supervise chemo and the most important gyn/onc in Seattle for surgery.

Taxol and Carboplatin once every three weeks for 6+ months did the trick. The first time. Unfortunately, 3 1/2 years later (April 2000) I again had abdominal discomfort and my CA125 had risen from 6 to 18. My surgeon ordered an ultrasound after a suspicious pelvic exam. Sure thing. Here we go again.....just before surgery I asked for another CA125 and my count was 28, still in the "good" zone. My doctors don't think this was significant at all but I sure do watch my numbers!

Surgery this time included a bowel resection. Taxol and Carboplatin again but this time once a week for three weeks and then one week off, for six months. Far fewer complications this way but more nausea and I hated that. Also, the first three times I ended up back in the hospital because my digestive system stopped completely. We followed treatment with second look surgery and then once a month, for three months, IP chemo...yeah, ahead of the pack and recent discoveries of its merit! With incredible foresight, my doctors had the IP port inserted new, each time, thus avoiding the complications many in the recent test group encountered.

Doctors say my ovca is chronic but, hey, it has been more than 9 years since original diagnosis and more than 5 since recurrence. I've seen my son married and become grandma to his boy/girl twins; I've been able to help my Mom through the loss of my Dad; my daughter is nearing menopause! and her boys are nearly grown; and at 63 I'm making retirement decisions. I appreciate every moment.

My heart breaks for those we have lost along the way. Let's hope an answer to all this is found soon....very soon, before my daughter and her friends are impacted by this disease as so many in my age group have been. Good luck and best wishes to us all.

During May 2005, I noticed abdomonal bloating and had severe abdominal discomfort. My family doctor sent me for a pelvic and abdominal scan and the results showed no abnormalities. The pain, both abdominal, and back continued. During November2005, I visited the local hospital's A&E dept. I was hardly examined, diagnosed as being constipated, despite giving history of dily bowel movements. I was prescribed pain killers and Lactulose solution. Five days later while on holiday, the situation got worse. The intensity of the pain, and a massive lump on the left side of my abdomen. I had a scan and a series of provisional diagnoses. I flew back home the following day and was taken directly from the airport to the hospital. Another scan revealed an 18 cm ovarian mass. CT and MRI scans confirmed this finding. I had a very good oncological team . I underwent bilateral salpingo-oopherectomy and omemtectomy. Diagnosis: Stage 1 A granulosa cell tumour.Recovery has been good and I am being followed up closely. However, I feel scared that this disease may recur. Please pray for me. Anyone with similar experiences?

I know what causes ovarian cancer from my experience of living in a stachybotrys, mold infested, leaky building.

I started having lower pelvic pain as soon as I moved into that building. Doctors did a scope up to bowel and said everything was fine. I had many other things happen that are caused by the mold but for now I will just talk about ovarian cancer.

After 5 1/2 years of living in this mold infested building, I ended up getting an awful 20 minute exposure to Stachybotrys with just a dust mask for protection. There had been a leak from the ceiling in the main hall of a 3 story (50 home apartment building) just outside my front door. It leaked to the carpet for about 9 months until the ceiling started falling down. They cut a sqare out of the ceiling and it was black like tar. It was determined the leak was coming from my bathroom. They covered the hole with a big steel plate to hide the mold.

There was a bad smell coming from my bathroom sink from the day I moved in. Air Quality guys said they could test in my suite but not the hole in the hall. They did tell me however that hole would tell a big story. I thought it would take just 1 minute to get a sample from the hallway ceiling but the steel cover smashed to the ground and it took approx. 19 minutes to sweep it up. The hall stunk for at least a week(with the steel plate back up there).

When that cover smashed to the ground, I instantly felt a thick, thick coating over my teeth, the inside of my mouth, my tongue my chest, stomach and an absolute throbbing pain in the lower right and left part of my stomach. The left side throbs about 4 times as bad as the right. That was 2 years ago and the throbbing has never stopped. I have had the most hideous boil infections (on my groin a red 1 inch boil with approx. 20 smaller ones covering my whole groin. Boils from one hole to to other down there to the extent of a doctor drawing a picture of it. I am continuously infected, uti too.

Ultra sound could not see my ovaries. CT scan cannot tell if they are seeing ovaries or lymph nodes. I have to see a geno in 2 weeks and book a laparascopy.

I knew before the air quality tests from my bathroom sink and the front hallway of that building came back that it was Stachybotrys mold. I was right.

I know that what I have now is ovary and or lymph node cancer. The instant throbbing pain I felt down there when I got that 20 minute exposure was absolutely unmistakable. Here in Canada, we are not tested for stachybotrys mold in our bodies - so all fungal tests for me come back negative. Crazy isn't it - I have a body full of fungus. I will keep you posted on the results - but I already know what to expect. Thanks for listening. Laurie

PART II

I am the one who wrote about Stachybotrys in my building. Two weeks ago I had a sigmoidoscopy that the Doctor could not complete. He hit a spot that gave me severe pelvic pain. When he pulled back - it went away. He pushed again and the pain was back. Again he pulled back and it went away. He did it a 3rd time with the same results. On the 4th try he pushed it further. It hurt so much he had to stop. He told me he could not complete the test because of my pain. First he said I have a really really spastic bowel, then he said I had a twist. I am not a Doctor but I was facing the screen and there was not a twist in my bowel. I made an appointment to see him last week. In his office he said I have a pocket!!!! I asked if there could be something under the bowel, around the bowel? He gave me some medication. It's no help - now what? I see you have used part of my story on your web site. You know part of my story. Can you help me? Laurie

On April 27, 2005 my world as I knew it changed. I was told after having a CT Scan that I probably had either Primary Peritoneal Carcinoma or Ovarian cancer due to large amounts of fluid in the abdominal area. The diagnosis was to be confirmed by an elevated CA125 of 618 and upon seeing a gynelogical oncologist. On May 12th I had surgery and a hysterectomy, debulking and staging was done. Stage IIIc Grade 3 Primary Peritoneal Carcinoma, sometimes referred to as Extra-ovarian cancer. I was then given the Taxol and Carboplatin due to the fact that the doctor was unable to remove all of the cancer. After 5 treatments my CA125 was rising, which showed I was platinum resistant. On Sept. 1st I then took one treatment of Doxil and was unable to take the second treatment on schedule due to low white cell counts. I decided to take a break from the chemo due to the fact I was feeling great. On Nov 2nd I had them check my CA125 to see what was happening without chemo and my numbers had risen 91 points to 271. I was beginning to feel discomfort in the abdominal area so I wasn't surprised. The lowest my CA125 has been since surgery was 167.

On Nov 23rd I had my second treatment of Doxil. I really wanted to not take anymore, but pain has a way of helping you change directions. Before April 27 I thought my bloating, gas and pains were recent never before gallbladder problems. No one in my family had cancer and I thought I was extremely healthy. This is a fight and I am giving it my best through prayer, faith and hope.

UPDATE

My mother, Kathy McGee, continued to bravely fight cancer after she submitted her story in Nov. 05. Unfortunately, her CA-125 numbers never went below the 167 that she mentioned. Her third line treatment was Topotecan once a week. After starting it, she only got sicker and it seemed that the chemo was only contributing to that instead of making her better.

In mid-March her oncologist told her that nothing more could be done and she went into hospice care. At that point, it had been ten and a half months since her diagnosis. After beginning hospice care, her pain was controlled for the first time in several months although she continued to vomit and lose weight. My tall, athletic, beautiful mother lost more weight than I would have thought possible and she never regained the ability to eat normal meals. We lost her on May 27, 2006, but she left a legacy of a life well lived with a loving husband of over 32 years, two grown children who adored her, and numerous family members and friends who loved her dearly and will miss her immensely.

We will never understand why such a wonderful woman had to experience something so difficult and tragic, but we will hold our memories close and continue to speak out against such a horrible disease. Cancer, regardless of the type, is a family disease since the entire family is affected in such a devastating way.

Kathleen McGee, September 10, 1955-May 27, 2006.

March 26, 1964 – December 4, 2004

Patti had a smile and laugh that was so contagious that I could hear the Angels laughing right now from Heaven. When you think of Patti, words and phrases like, Loyal, Honest, Faithful, Laughter, Joyous, Hard Worker, Strong, Intelligent and Worldly come to mind. You think of a TRUE FRIEND foremost, then relative. Someone who was always there for you through thick and thin. Someone who you could run something by, and she would never hesitate to give her “Personal Opinion” and then laugh! Patti was a joy to be around, if she was with you, your day would be filled with pure excitement, never knowing what lies ahead. Patti was someone you would always want on “Your Team”. She was pure enjoyment. She was someone who knew “Everything” about “Nothing”! She brought a smile with her wherever she went in that “Coach” bag of hers!

When she was diagnosed with Clear Cell Cancer a form of Ovarian Cancer back in October of 2003, we were all devastated. After the initial shock, she became extremely focused on fighting this miserable disease. She fought with all her might for the next 14 months doing everything the doctors asked her to do. She became very sick and weak during her many rounds of chemotherapy where she had to be admitted for a week at a time during her treatments. She had many side effects from all the medicine, blurry vision, loss of hearing, nauseous but she was a trooper, never really complaining until the pain was so severe that she couldn’t handle it anymore, and then she wore a pain patch. This particular cancer was a form that continuously produced and multiplied tumors throughout her body. Most people would fall into deep depression, but not Patti, we would talk about these “set back”, but then she would be determined to do the next step, never loosing focus of getting through this. She had many family and friends visit her throughout the 14 months and she would always welcome all of them with open arms and do all the touristy things even when she was so tired and weak. She didn’t let this illness stop her from getting out and doing the things that she loved. Going to ballgames with relatives, going shopping or out to lunch with friends, taking trips to New York to see friends from where she was from. She always said, “If I’m OK to sit home, then I’m OK to sit in a car and go and do something”. Her determination was an inspiration to all of us who were around her.

During her battle, Patti always kept her wit and positive attitude. Even when the news wasn’t good – which many times it wasn’t, she never once gave up hope. The only thing bigger than her smile was her heart and her faith. Patti leaves her Family and Many Friends who miss her tremendously because she touched each of our lives where they will never be the same again. When Patti left us, our lives all skipped a beat, and life as we knew it doesn’t exist anymore.

Words can’t describe how much we all love and miss you Patti…and by the way, we’ve all gotten the “Signs” that you have given us, we know you’re around us each day in “Spirit” and that makes us “Smile”.

Love the Family and Friends of One of the Happiest Angels in Heaven

Whispers From Heaven By Andrea Peca

On my 28th birthday, I found out I was pregnant with my third child. My husband, two children and I were so excited. We couldn't wait until we held our new baby in our arms and looked forward to sharing our lives together. As a family, we enjoyed many walking trips, but one will always remain in my mind....

It was a beautiful summer day. I was 7 weeks pregnant. We had decided to go on a walking trip and as we were having so much fun, the day passed by quickly. After arriving home and trying to wind down for the day, I felt a little discomfort and realized I was spotting. Of course I panicked as you can only imagine the thoughts I was having. I began to pray for my baby. My intuition told me something was wrong.

Upon contacting the hospital, they requested I wait until the morning and to keep watch over how I felt through the night. For some reason, one that I cannot explain, I continued to have a bad feeling about what was happening. Most of the night was spent worrying about my baby, and as the spotting continued, I headed to the hospital.

Once arriving at the hospital, I had an ultrasound performed. The doctor said the spotting was due to a little clot underneath my uterus and that I shouldn't worry as it would soon dissolve. He then sat down, and told me that there was another problem. As he cleared his throat, he asked me if I was aware that I had a large cyst in my left ovary. The shock was devastating. I wasn't sure what he was telling me exactly. All I know is that I had the longest drive home.

On the following day, I visited my doctor. She didn't exactly know what to say to me, but the look on her face told me she too was worried. She immediately referred me to an OBGYN doctor, who made an appointment for me the very next day. The OBGYN doctor listened carefully to me as he reviewed my file. Before finding out from him what I was so afraid to hear, I explained to the doctor all my fears. I told him that I loved my baby. I told him that I didn't want to lose my baby. I cried and cried. I needed him to understand that I was so very afraid of what I expected he was going to tell me. He touched my hand and said that he thought I had ovarian cancer.

The room began to spin. Cancer? Me? He had to have been wrong! I am a young and healthy mother. My uncontollable tears flowed. How could this happen to me? How did this happen to me? The doctor then told me something that no pregnant mother would want to hear. He said that I would need to have surgery to have the tumour removed. The surgery would have to be performed on my 20th week of pregnancy, as this was the safest time for the baby to successfully recover from any trauma.

I prayed to God for his guidance, support and to help me make the right decision. The world so often felt like it wasn't there. All that mattered to me was my family. I wanted to have a healthy baby. I wanted to be here for a long time. I couldn't imagine my children without me. I wanted to see them grow up, get married and have their own families. I wanted to fulfill all my dreams. I was too young to die. My baby needed a chance to live. I prayed every moment I was awake. My faith in God became stronger each day. I knew in my heart that no matter what happened, God would take care of me.

My husband held me and explained to me that he wanted me to have the surgery as our other two children needed a mommy. I knew the ultimate decision was mine. The decision to have my ovary removed while pregnant would risk my baby's life. If I remained pregnant after the surgery, my child could have ended up with many serious problems. The love for my unborn child was stronger than I could ever explain, as I knew my baby's fate was in my hands. The confusion was overwhelming. From weeks of crying, I looked awful and many around me were worried for my health.

The time had come to make my decision. In my heart I knew that God was right by my side. Upon my visit to the OBGYN doctor, I asked for his personal opinion. He said to me, that if I was his wife and we already had two children, that he would want me to have the surgery. He said that God gave me two healthy children to take care of and it was my responsibility to be there for them. As he did not know how quickly the tumor was progressing, the cancer could be at its worst stage at time of delivery of my baby. If I waited until my third baby was born to have the surgery, my husband may be taking care of 3 children on his own.

God gave me the strength that day, for I decided that this silent killer, which is what ovarian cancer is really called, was not going to beat me. I decided to have the surgery. While recovering from the devastating experience, my baby's heart beat dropped very low. I cried and prayed. I couldn't lose her, not now, not ever. My faith in God and my many prayers is what got me throughout the next several months.

My beautiful angel was born by C-section at full term. She is now 5 years old, healthy, happy and so very special to me. My dear daughter and I have a bond that I could never explain to anyone. I risked her life to save mine and I must always remember how much I prayed for her. I believe in my heart she was and still is my guardian angel. If I wasn't pregnant with her, I would never have known about having cancer and maybe it would have been too late. My daughter is a gift from God and each day I thank Him for my beautiful child and for my treasured life.

Each day is a gift, a true gift from God.

When I was nine years old I was diagnosed with ovarian cancer. I also had scoliosis, and I wore a brace to correct the scoliosis, but the brace was turning on me so, we went to the doctors and they did a Cat scan and they found ovarian cancer. My blood pressure was off the adult chart.. i have had 5 surgeries for my cancer now...and i've gotten my left ovary taken out...and there was also a kidney on my right kidney.. my kidney was saved. I've been cancer free for 3 years now, it will be 4 years on March 26, 2006.

I was 10 years old when I first started menstruating. At the time, my mother was dying of brain cancer. I can remember being so upset that something was happening to me, also, and was afraid to tell my father. He found some of my bloody underwear, which I was hiding from him, and had a female friend of the family tell me the facts of life because my mom was too sick.

I didn’t have an easy time of young womanhood. My periods were painful and heavy. I would spend the first day of every cycle lying in bed with a heating pad on my stomach and making frequent trips to the bathroom to throw up. I missed a lot of school during my teen years. People would tell me that it was all in my mind, and if I would just get up and stay active, the pain would go away. I was taken to an osteopathic doctor for my first internal examination, and he put me on birth control pills to take care of the cramps. I was 13.

I met my future husband when I was 16 and he was 21. We were married in 1972 when I was 19. After four years, I had my first pregnancy. I miscarried at three months. After a few months of letting my body get back to normal, I was able to conceive again. Except for occasional nausea, I had an uneventful pregnancy. Six months into my pregnancy, I noticed some spotting and after telling the nurse at work, I was told to drive to my Gyn’s office. He diagnosed an incompetent cervix and said he would have to perform a Shirodkar that day. I couldn’t locate my husband, so I drove myself to the hospital. I can remember crying and praying on the way that God would let me have this baby. Thankfully, God heard my prayers and three months later, in 1976, I had a healthy, beautiful baby boy. I was able to conceive again, had another Shirodkar in my third month of pregnancy, and in l978, delivered another healthy, beautiful baby boy!

After my two successful pregnancies, the periods would still be painful and heavy. I faithfully made my yearly visits to the Gyn. One day I got a call from the office that my pap smear showed pre-cancer cells. The report had been sitting on the doctor’s desk for a week before they called to inform me of the results. I was upset about that, and decided to change to another Ob/Gyn practice. Eventually, after years of complaining of heavy bleeding and cramps, I had a laparoscopy and was diagnosed with endometriosis, and I also had a fibroid. The Gyn told me I had high levels of estrogen. I was given injections of a powerful drug called Lupron, which puts the body in a menopausal state. I had these injections every month, for six months. Everything seemed to be under control for a while, but the heavy bleeding and cramps came back, and I started complaining of spotting between periods. I was having regular endometrial biopsies and was diagnosed with endometrial hyperplasia. The Gyn prescribed medroxyprogesterone, 10 mg., to control my irregular bleeding.

I started keeping notes of my irregular bleeding and presented them to my Gyn during a routine office visit. I can remember asking her if I should have a hysterectomy, since I seemed to be plagued with this diagnosis of endometrial hyperplasia. I was in my late forties now, and I surely wasn’t going to have any more children. She told me that it wouldn’t be a good idea, that it was major surgery and she didn’t think it was necessary.

Around 1998, I wasn’t feeling well in other areas of my body. I started experiencing indigestion and gas and I was popping Tums and over-the-counter gas medications like crazy. I also started noticing an odor in my nose and this led me to an ear, nose and throat doctor. The odor scared me because I remembered that my mom smelled an odor when she was diagnosed with a brain tumor. After ordering a CT scan of my sinuses that showed everything to be normal, he suggested I see a gastroenterologist. He thought the odor might be coming from my stomach. In the meantime, he prescribed Zantac for my acid reflux. When the prescription for the Zantac ran out, I was still experiencing indigestion and gas. I started eliminating certain foods from my diet to see if it would help. I found Romaine lettuce to be more tolerable than Iceberg lettuce and always use that when there is a choice. I was making homemade soups, using recipes from health food cookbooks, drinking lots of water and exercising, but nothing seemed to help. When I turned 50, I finally got up the nerve to go to the gastroenterologist. In March 2003, I had a colonoscopy and an endoscopy. I had one polyp that was removed on the spot and declared negative for cancer. The endoscopy was normal. The gastroenterologist prescribed Zantac and said, “See you in five years.”

I had my yearly Gyn appointment in early April 2003. I mentioned to her that I had a lot of pain in my left side and was having gastrointestinal problems. She ordered a sonogram during which they inject a saline solution in the vagina. They found a cyst on my left ovary, which concerned them because it was large. The doctor said they would do another sonogram in three months to see if it was still there. The same month, my Gyn also performed a D&C because I was still experiencing unusual bleeding between periods. I was diagnosed with endometrial polyps and a thick endometrial lining (hyperplasia). It was back to taking the medroxyprogesterone. They kept an eye on my left ovarian cyst with sonograms and it finally disappeared, but I developed three more cysts in my right ovary. That was in June 2004. They told me these were small and it was not a concern. They would keep an eye on them.

It was a beautiful fall weekend in October 2004. After a four-hour drive, we finally arrived in the “Happy Valley” for a Penn State football game and tailgating party. I was so excited. It was going to be fun! Unfortunately, I was getting my period–or so I thought–because it was hard to tell these days since my periods were so irregular. When we arrived at the motel, I just wanted to have a cup of hot tea because I was having some cramping and felt bloated. My husband managed to get me a cup of tea from the office manager. I sat in the chair drinking my tea while my husband got ready for bed. It was a long night. I can remember curling up in the fetal position, not feeling well and having a lot of pain. I was taking ibuprofen every 4 hours. I managed to have fun the next day at the tailgating party, thanks to the ibuprofen. The football game was exciting, although the icy cold bleachers seemed to send a chill right up my buttocks into my back. I continued to take the medication for the pain and got through the weekend without a complaint. When it was time to go back to work on Monday, I knew I had to do something because I was still in pain. It was getting hard to walk! I called my primary care physician’s office and made an appointment with the nurse practitioner for that afternoon. I give her the credit for saving my life. When I explained my pain to her, she felt my right side and told me she thought it was my ovary. She ordered an ultrasound at the hospital, had a nurse draw blood for a CA125 blood test and told me to call my Gyn’s office and make an appointment with whoever could see me ASAP. (Prior to this, no doctor had ever ordered a CA125 blood test. When I had asked about it some time before, my Gyn had replied. “It’s not routinely given because it’s prone to false positives.”) When I got home that Monday night, there was a message on my answering machine from the nurse practitioner. She wanted me to call her at the office. She’d be there until 7:00 pm. I immediately picked up the phone and called her. She told me the ultrasound showed a mass and asked me if I had been able to get an appointment with the Gyn. I said I had one for that Wednesday with someone other than my regular Gyn. The Gyn examined me that Wednesday and ordered a CT scan. When the results came in, he called me and told me I had endometrial hyperplasia suspicious for adenocarcinoma. It could be endometrial cancer. My CA125 was also elevated to 98. I was advised to have a total hysterectomy. He said the cancer was probably contained in my uterus, but staging would be done during the surgery. They suggested I see a gynocologist/oncologist and gave me the name of someone well respected in the area.

I saw the gynocologist/oncologist. in mid November 2004 and he agreed with the diagnosis. He also found a polyp on the inside of my cervix, that was hanging out through the cervix It later tested positive for cancer. On December 14, 2004, I had an “exploratory laparotomy, lysis of adhesions, tumor debulking, hysterectomy, resection of multiple peritoneal disease, bilateral ureterolysis, resection of bowel nodules times two, one with enterotomy and repair, radical omentectomy, appendectomy, and retroperitoneal extensive lymph node dissection.” I was 51 years old. At the conclusion of the surgery, there was “No gross residual disease left behind.” They told my husband that they found cancer in my uterus and both ovaries, but the pathology report would be more specific. I tried not to think about what they might have found for the next couple of weeks. After all, Christmas was right around the corner!

In early January 2005, I was given the good news--if you can call a cancer diagnosis “good news.” I had stage 1C endometrioid-type ovarian cancer in both ovaries, FIGO grade 1 tumors, and stage 1C endometrioid-type endometrial cancer, FIGO grade 1 tumor. I had extensive endometriosis. So, later that month, the gynocologist/oncologist put a port-a-cath in my chest, and I received six monthly rounds of chemotherapy (Taxol/Carboplatin). I was thankful that we caught it early. My gynocologist/oncologist. told me my 5 year survival statistics are 95-98%. I just had a checkup in October 2005 and everything looks good. He said I have a small pocket of fluid on my left side, which is normal and he isn’t concerned about it. My CA125 is now down to 8.3. I’m very thankful that my chemotherapy is over and things are looking up. The chemotherapy did not keep me from working. I was able to hang onto my job, thanks to the kind people who did my job for me when I wasn’t feeling well. My hair is growing back now, and I love having eyelashes and eyebrows again! You learn to be thankful for the smallest things. I intend to be here to see my sons get married some day, and to look forward to many more years with my husband. I’m happy to be alive!

My suggestions:

Know these early warning signs of Ovarian Cancer:

• Indigestion
• Gas
• Bloating
• Nausea (I didn’t have this)
• Sometimes Pain (I was very lucky to have this)
• Constipation or Diarrhea (I had occasional constipation)

I also recommend an ultrasound procedure where you drink 32 oz. of water an hour and a half before your appointment. The technician told me they get a clearer picture that way. Many doctors are in disagreement with this, but the ultrasounds I was having at my Gyn’s office did not require drinking the water. The hospital’s ultrasound did require drinking water and that is the one that revealed the mass.

Finally, don’t take “No” for an answer if you feel that there is something wrong. You know your own body better than anyone else. Listen to it!

Lovingly submitted by

Barbara

In May of 2004, my beautiful mother was diagnosed with ovarian cancer at age 70 years young. Mom was a vibrant and loving woman. She gave her complete attention to you when you were with her. She was at peace in her gardens and loved to cook. Her home was a retreat. She prayed daily for her family, friends and even those she had never met. Mom was our children's "second mother". Her diagnosis was a shock, but she was a tower of strength through her surgery and recovery. She had chemotherapy as a "precaution". The doctor thought her cancer was at an early stage 1. Mom did not enjoy losing her hair, but she wore her many hats with flair! We were elated when the doctor gave us the great news that she was going to be fine. Our prayers seemed to be answered.

It was such a shock when her cancer returned in late November. Her cancer was resistant to the treatment. Mom fought this terrible disease with all her might. She insisted on more chemotherapy and had her last treatment two days before she died. Before she died, she gave each of us a bit of her wisdom and encouragement. She did not say goodbye, she just said that she would be all right and so would we. She ensured me that worry was a waste of time, that all things work out. Mom slipped away in the early morning on December 22. Within minutes of her death, a heavy snow (her favorite) began to fall, covering the earth in a silent white blanket. It snowed for 7 hours that day.

About two weeks after my mother's death, I dreamed about her; my dream assured me that she is at peace. The death of my beautiful mother was the most difficult experience of my life so far. I miss her daily and sometimes it is hard to imagine that she is gone. However, as days go by, I remember her words of wisdom, her deep love for me and the legacy of love she left to all who knew her. She was a blessing in my life and I thank God for such an incredible mom.

My mother was diagnosed with ENDOMETROID CARCINOMA GRADE 111-C. She was operated TABSO last August 2004 and start a six session chemotheraphy last September 2004 and ended January 2005. Oncology use TAXOL AND CARBOPLATIN for her chemotheraphy. She then have a follow-up check up every three months. This August we have our second follow-up check but our oncology found two lymph nodes through CT scan and TRANSVAGINAL lab. We are advice to have another chemotheraphy same as the first one the soonest possible.

I was ecstatic to read the story of a 6 year survival story. There are women out there that are making [it] despite the odds and we need to hear from them. I am currently celebrating 2 years cancer free. I was diagnosed stage 3C Aug. 14, 2003. Odds given to me were poor but I needed to survive and Ovarian Cancer and I butted heads. I did 8 rounds of Carboplatin and Taxol, then 12 rounds of Taxol as maintenance. My CA125 has been under 20 since Sept. 03. During and still to this day, I take immune builders, recieve accupuncture to improve my immune system. I have destressed my life as much as possible, I stop to smell the roses. When it is nice out I don't like to come in the house. God has been good to me and this cancer business was not all bad it has taught me lots of things about life and myself. I am a survivor and God-willing intend to stay that way.

My mom, 72 years old now, is fighting with primary peritoneal carcinoma. Stage IIIC, epithelial serous type. She was diagnosed in Oct 2002 just a couple months after she came back from a short stay with us in US. The first surgery was performed on Nov 4, 2002, but no optimal or sub-optimal debulk was achieved due to in-competency of the surgeon. After 3 cycles of chemo, she was in remission. In late June 2003, she had recurrence with elevated CA125 and a tumor detected by ultrasound. One cycle of chemo put her back to remission clinically. In August 2003, the second surgery was performed by a gynecology oncologist, followed by 6 rounds of chemotherapy. By May 2004, the cancer came back again. We tried different Chinese herbalists and Chinese meditation (Qigong), but the disease was progressing. By the end of July, 2004 she had excessive ascites, and could not eat or sleep well. We were left with no choice but to send her to do more chemotherapy. She responded very well to Cisplatin again. Ultrasound showed no sign of tumor 3 weeks after chemo. CA125 came down to 970 from 1300. After the chemo, my mom takes one herb, one nutrient, and Flaxseed Oil (FO)/Yogurt. I am trying to put her more on Budwig’s protocol gradually, by increasing fo intake, adding flaxseed, exposing to sunlight, eating more organic food. After the 2nd round of chemo since this time relapse, her CA125 dropped to 110 ~ 170 with fluctuation. After the 4th chemo her CA125 back to normal range and no tumor or ascites was detected by ultrasound. She finished the last chemo at the end of Feb, 2005. The 3rd recurrence happened on June, 2005. The chemo treatment restarted on August, 2005.


Brief timeline:

Oct 2002: Had symptom of ascites, looked like a 5-month pregnant woman.
Nov 2002: Diagnosed. Primary peritoneal carcinoma, stage IIIc. Non-debulking surgery.
Dec 2002 ~ Feb, 2003: 3 rounds of chemo
June 2003: First cancer recurrence
July 2003: One round of chemo
Aug 2003: Surgery with optimal debulking
Sept 2003 ~ Jan 2004: 6 rounds of standard chemo
June 2004: 2nd cancer recurrence. CA125 1300
July 2004: first chemo after the 2nd recurrence
Aug 2004: start fo/yogurt as part of Budwig’s protocol. CA125 drop to 970
Sept 2004: second chemo after the 2nd recurrence. CA125 down to 110 ~ 170 range
Oct 2004: third chemo after recurrence
Nov 2004: fourth chemo after recurrence. CA125 down to 92.
Dec 2004: CA125 down to 21.44. Had the 5th chemo after recurrence.
Feb 30~Mar 1,2005: CA125 in 20s. Had the 6th chemo
June, 2005: CA125 100
July, 2005: CA125 climbed to 300, ultrasound detected a tumor, though CT was clean.
August 23, 2005: CA125 above 1000, third recurrence, starting the chemo with taxotere

I am very grateful my mom is still with me now, and I can call her everyday for a few minutes. I wish medicine advance fast enough to save her. I am also actively looking for some alternative therapy to save her life. If you have any information or suggestion for me, I will be very grateful. Please write to me at [email protected]. I feel helpless sometimes. Also, if you want to learn something from my mom’s experience, I’d be very happy to help.

My mother had a stroke in early april of 2003. She had undergone a battery of tests looking at every part of her body or so we thought. Like the fighter she is, she survived with just a few minor drawbacks. In October of 2004, her feet had started to turn blue which she contributed to poor circulation. My sister would rub them and they would return to pink. We didn't think much of it.

In late November she started having trouble breathing, she didn't have medical insurance and avoided going to the doctor as long as she could. She was xrayed several times and sent to a pulmonologist for a diagnosis. They related everything to the stroke. As January approached her breathing had become more and more labored, she went back to the pulmonologist and back to her PCP. Still no diagnosis. She finally had enough and pushed her PCP into admitting her to the hospital. She was admitted on a Thursday. Ct on Friday and on Monday imagine our shock when they informed us that she was eaten up with ovarian cancer.

We have tried to recall the hidden symtoms, she had them: indigestion, pain in the abdomen, a feeling of fullness,bowel changes, but little did we know about this devasting disease. She died 2 weeks after she was diagnosed. They had given her 2 rounds of Chemo with the hope that it might slow things down. But it didn't. I thank God everyday for not letting her suffer and giving us the years he had. She was a Great Mom and an awesome Nan!

I would just like to tell you to listen carefully to what your body is telling you and don't take no for an answer. This can be fought and with the love of your family and the trust of God you can be a survivor.

Thank you for reading my story and I pray that you continue the good fight and live a long and healthy life.

Our mother, Shirley, was diagnosed July 7th with Stage IV Ovarian Cancer. We have since found out it is in her lymph nodes, chest, lung and spleen. She started her first chemotherapy cycle on August 1st. Her doctor said that surgery was not an option for her. I am writing this on Thursday, Aug 4th, 3 days in from her first chemo session. We find it difficult to see her so fatigued and in pain. She is the strongest woman I know and very old school as far as taking medications. It's a chore to get her to take tylenol and especially with the other meds she is taking. She's afraid of addiction. I've never written on a site of any kind before I guess I'm feeling scared, angry and uncertain of what might happen to my mother or I should say "Our Mother"

Shirley is the mother of four children; Cheryl, Colleen, Tommy & Sharlene (Charlie). She is the grandmother of 8 and has been married to our wonderful father, Tom, for just about 51 years. They have always been a stunning looking couple as well as loving and caring parents. We are blessed to have them. They are always there for their children and their grandchildren. They are unique beyond words in their love for their family.

My father has had prostate cancer and emphysema for many years and is also in need of constant care for which my mother, up until she got sick, was his primary caregiver. My sisters and my brother are all pitching in to care for them both, as we all have our own families, it has been a little crazy but we all know they would do the same for each and every one of us. My sister Colleen has moved into my parents house with her husband and two of their three daughters. It is a Godsend they were able to do so. Knowing she is there in times when another of us can't is very comforting.

I will end my story with great hope, prayer & faith in God and in the strength of my wonderful mother that she will pull through this horrible disease and stay with for a long time coming. I would also like to send hope, faith and love to all the families out there struggling with this overwhelming disease. Keep God close to your heart and your heart close to "His" ear and He will listen.

God Bless, Charlie & The McAllister Children

I have not been diagnosed but am scared senseless...Don't even know where to start...saw my primary physician in mid June (it's now July 7th) for fear that I might have a bowel obstruction because of changes in my bowel habits for the prior 2-3 weeks. Ran all lots of blood work, had x-ray to rule out obstruction (there was none)...ended up having a CT scan done (both abdominal & pelvic) that reavealed a 3.8 x 3.8cm complex adnexal cysts with septations...there was also a small lesion on my liver noted which the radiologist is THINKing is an hemangioma (no big deal)...ANYWAY...don't have any answers yet...have seen primary, my gastric bypass surgeon and have sent test results to my gyn. My gyn sent an initial response back that he isn't concerned that all seems within normal limits. I'm following-up with him because he didn't have the information regarding what spurred all of these tests in the first place...should hear back from him again today. I am planning on INSISTING on an ultrasound as was recommended by the radiologist that did the CT scan...I'm worried sick at this point. Am also planning on following up with a gastrointerologist to explore my abdominal& bowel discomfort/difficulties. If anyone out there as any advise, comments, etc. it would be greatfully received and MUCH appreciated. Paula

My sister passed away from ovarian cancer in 12/04. She fought it hard for over a year until her body could not take it anymore. She had clear cell cancer. I miss her everyday. Our family will never be the same. My mom will never be the same. WE LOVE YOU PATTIANN

Before I can tell my mother's story, I have to tell of the type of woman she is - a fighter! She always seems to find the strength to get her through her recurring cancer. I like to believe that if people have hope and an outlet to release anxieties then people can gain strength.

When I was 8 years old, my biggest fear was losing my mom. It was one of those silly but oh so real childhood fears. I remember crying uncrontrollably at the thought of not having my mom around. When I was 14, my mom was diagnosed with ovarian cancer. She had complained of stomach pains and went to the doctor to find that she had cancer throughout her ovaries and uterus. At the age of 34 she had a complete hysterectomy, with 8 harsh treatments of chemo to follow. She got very sick from the chemo and was given a 30% chance survival rate. We were terrified. However, she went into complete remission for 5 solid years.

At the age of 39, and after many routine tests, we found out the cancer had come back, but this time to her liver. She had pieces of her liver removed, and more rounds of chemo. She went into remission once again for a year, only to find, after many routine tests that it had spread to her lungs, liver, and pancreas. Since it was still in the early stages, the doctors were very hopeful. She again had more chemo. She's been on and off chemo for years and just recently her body has started to reject the chemo. We just found out that her CA125 has risen again, which has always been a red flag for us. So next week, she sees her doctor and all we can do is hope and pray. It's scary to think what this disease can put people through. But my husband always says everything happens for a reason and the fact that mom has survived what is now 11 years since her first diagnosis is a miracle!

I tell you this story with tears in my eyes. At the age of 45, her two children's weddings, and the birth of her three grandchildren have all been experienced by mom as she underwent chemo and days of exhaustion. But like I said she is a fighter and always had a contagious smile on her face! I am now 25, and a mother of a toddler and still feel that 8 year old girl coming out in me. That hopeless, and scared little girl who wants her mom. But I am forced to come to terms with the fact that my mom who is also my best friend may lose this long battle. I am just lucky and thankful to have had the last 11 (and hopefully more) years with her, and pray everyday for a miracle. This is a terrible cancer and it affects the entire family and my hearts go out to all of you who are in the same battle. And I thank you for listening and being an outlet for my anxieties.

I was dx in September 2003 with stage IV ovarian cancer. I felt fine before diagnosis. I was a little bloated and tired, but I thought it was irritable bowel and summer heat making me tired.

I had a swollen lymph node in my groin. I had it since May 03 and my ob-gyn was not concerned about it. I had a gut feeling it was worse than it appeared so I sought an opinion of a surgeon, who found another swollen lymph node under my arm. I was scared then. I thought it was probably lymphoma, since my Dad had that type of cancer. A pet scan showed a mass and a spot on my liver and behind my breastbone too.

I was referred by my ob-gyn to a great gyn-oncologist. I had debulking surgery (9 days in hosp. and a long recovery) and 6 mainline carbo-taxol treatments. I did well and my CA -125 went from 400 to 50 in two treatments, then down to single digits (where it still is). The worst problem I had with the chemo were very low counts (especially white). I was hospitalized in March 04 with a severe infection.

After the mainline treatments in May 04, I had to have a surgery for a big incisional hernia (repaired with mesh). Then I had 12 more taxol consolidation treatments. I finished with those in March 05 and now am "dancing with" NED and feeling very good. I have a lot of energy and feel normal. My hair is starting to grow and it seems strange after 18 months of baldness. The best part is getting "stubby" lashes back and a little brow. I have changed my diet and eat a lot of natural fruits, grains, soy and veggies, and no meat and take some supplements.

The Lord Jesus is my guide and source. I will trust Him with my future. I do not worry much about the stage and stats on survival. I know He is in control. For all of you who have this cancer, keep trusting, love each day, and be thankful for the life that you have been given.

May, 2005 I have to begin by saying that I have not been diagnosed with Ovarian Cancer. However, I am being monitored.

The story goes . . . I saw my OB/GYN in January and lied to him that I had some pain in my pelvic region (just because my best friend suggested getting a transvaginal ultrasound - since a Pap Smear is utterly worthless for anything but Cervical Cancer). The procedure revealed a "complex cyst" on my left ovary and my doctor had me come in for some "tumor markers." All of my tumor markers were fine except the CA-125, which registered 50. I wasn't even that concerned, knowing the cyst itself can falsely elevate the number. But when he said I had to see an Oncologist/Gynecologist, I got scared.

My Onc/Gyn performed a TVS in his office and said the cyst doesn't look malignant and that maybe we should just monitor it. Well, I returned 6 weeks later with no change in size (but my CA-125 went down to 42).

I go back and forth on this. My ovaries are not more important than my life and I'm not one of these women who feel as though life wouldn't be worth living without children. Having said that, I certainly don't want to give up my ovary only to learn that it was perfectly healthy.

Surgery is not something to laugh at and there are risks. I am relatively young, have no known ovarian cancer in my family and have never used fertility drugs. However, I have a 2.5 cm cyst embedded within my ovary that is complex.

I am a realist. I know the stats and the prognosis for anything over stage III is..."settle your affairs" - that's what a very good friend's husband told me in confidence (who is an oncologist). I would hate to sit on this for another year, only to lose my entire reproductive system and my life too.

It seems like I have it figured out (to have surgery) but I truly don't.

I welcome, welcome, welcome all opinions from women out there who have been through this.

Thanks ladies - and much luck to you all.

Jane ([email protected])

Well this is a long story but i will try to make it short....I have been having horrible pain for the past 3 yrs and was diagnosed with ovarian cyst on one ovary. Now I have one on the other ovary and both have grown. Like I said, I have horrible pain. My last doctor told me I was not a candidate for surgery because I am overweight. The gyn before her said the same thing but used the word "fat". Last summer, I suddenly had a new horrible pain in my lumbar spine that came around the time I was ovulating (the first time the pain only lasted a week). I went to the local er and at the time, I had private insurance and was treated great. The doctor relieved my pain with two injections of dilaudid (but i barfed all over the drug store). Doc had diagnosed me with spondylitis, then a month later when i was ovulating again my lumbar spine pain reoccurred, so i went to er again. Had the same er doctor but this time I had county insurance. I was lying on a gurny in an exam room and the same doc had before came storming into my room with no nurse and was very aggravated. Doc lifted my gown shoved, his hands upon my abdomen and started digging his finger tips into my flesh really really hard. But doc said nothing's wrong with me. Then I was moved into a wheelchair and he came back later into my room and told me I was costing the county too much money and I had run up a $4,000 er bill because of my back pain. He was loud, mean and rude in my face and threw me an ibuprofen, down right scary. Doc told me it was not and emergency that I could not walk and told me not to come back to his er. So I was about to leave the er and my doc came by and stated that my x-rays were all clear. So I asked someone else at the er why I was hurting and they whispered in my ear that the doc was an ass and told me I had a big black spot on my lumbar spine! So I laid on the floor for about a month not able to lift my upper body up. I had to drag myself to the toilet and I had to pee standing up (while holding on to the sink) because if I sat on the commode I could not get up. It was horrible, the whole time I had no idea if I was dying or what. Finally my roomie kept calling different mri and finally one of them were sweet enough to give me an mri even if my insurance would not pay (God bless them). Come to find out my mri said I had an L-5 herniated disk but I did not do anything that could have hurt my back. Then I went to the county doc and he threw me a single dose of celebrex, funny guy. Now, 7 months later I have started having migraine/facial/mouth/ear pain and eye problems for a month, so my new doc orders an mri of my brain. Now I have been diagnosed with a pineal cyst and now I have had two rectal bleeds. I was in the hospital for a couple of days, the neuro doc came by and told me he wanted my mri films. Then to look at, next thing I know, an er doc comes in and says on the neuro doc thinks it is my sinus. Oh boy! Oh my God, I practically ran from the hostpital. I know right before my period I am going to be lying on the floor again hurting so badly and no one will do anything for me. It is awful! At this point, I am sitting here wondering if whatever is in my ovaries has mesastized from my ovaries, to my colon, to my spine, to my brain. I know a spinal tap will show if my pineal cyst is malignant and it will show if it has mesastized from my spine but all the docs I have seen will not do a thing for me but milk my insurance.... unbelievable.

I have developed a simple and wonderful analogy: if my car was broken, I would take it to a mechanic and the mechanic would tell me what was wrong with my car then the mechanic would fix the problem then charge me for the repairs. I can buy a new car but not a new body! I take my body to the docs, docs tell me what is wrong (sometimes) then they will not give me any further treatment and to make matters worse they are mean and careless.

Dear God, I have no idea what to do. I guess this is exactly why so many women are dying from ovarian cancer. My ex-gyn told me she could not give me any pain meds and I had to explain to her that I am not wanting pain killers because there is no way I can know when the ovarian/pelvic pain will start and the very severe pain only last 30 mins to an hour. Of course, that would not be enough time for a pain killer to work anyway! Gyn treats me like I'm a drug addict but I am not, so I have to be in pain because these doctors are busy profiling me. I have no history of drug abuse, arrest etc. I don't even drink alcohol. I just want a proper test and diagnosis, treatment would be nice also. Thank you for listening to me vent ;)

I was diagnosed with Ovarian Cancer two weeks ago. It is stage 2C. I'm 30 years old.

Here is my story. I have been sport rock climbing regularly for about 3 years now and finally had gotten a membership to a rock gym in Philadelphia called Go Vertical. Having recently moved within 1 mile of a gym and going through a divorce, I was eager to start climbing more regularly and make new friends. I was going 3-4 times a week for the past six months. I had never before considered myself athletic but I was now in the best physical condition of my life. I love climbing.

2004 had been a year of chaos for me. Separating from my husband, moving, selling a house, hectic work schedule, climbing, making friends, dating, etc etc, things started to slide a little. At years end I decided 2005 was going to be my year without drama. It was going to be the year I paid my rent on time and made it to the doctors when scheduled. These were my resolutions. I started early. I made an appointment with my gyn on 1/3. My regular doctor wouldn't be in but I decided to go anyway and have her colleague do my exam. I was getting stuff done! He found a lump. 10 years ago I had something called a dermoid cyst, could it be that? He ordered an ultrasound. In my efforts to go get things done I had the ultrasound done on 1/6. The tech agreed the mass looked like a dermoid measuring 8cm. The doctor called me in that afternoon and we discussed surgery. I had a surgery scheduled for 2/15 with my regular gynecologist at a county hospital. I was pissed off because the recovery time would be 4-6 weeks -no climbing... this was going to delay my goal of learning lead climbing by spring.

A few days later I talked to the owner of the gym to tell him to cancel my membership for February and March. He asked if I'd be traveling somewhere exciting. I told him the story and he responded with 'Have you talked this over with Dan?' 'Why would I talk to Dan?' 'Dan is a doctor at the University of Penn' 'That guy?!?' I knew Dan as a climbing buddy but had no idea he was a surgeon at one of the best hospitals in the state. I did talk to Dan and sent him my ultrasound. He is not a gyn doctor but he strongly suggested I go see a gyn oncologist even though nothing in my ultrasound indicated cancer. His recommendation was based on the idea it would be better to have a nationally known expert perform my surgery because surgery is a big deal.

I went to see the doctor at Penn. He agreed that the cyst was a dermoid based on the ultrasound and MRI. He felt confident that he would be able to preserve my ovary when he removed the cyst. This was important to me. I scheduled the surgery at Penn on 2/16. This move may have saved me the pain of enduring more surgeries and may even save my life. In the very least it give me peace of mind that I made the best decision I could have regarding my health. If I hadn’t formed relationships through climbing, I wouldn’t have this.

The experienced doctor recognized the tissue looked suspicious. He removed my entire ovary, tissue on my pelvic wall and my appendix. He removed lymph nodes for study. He did all of this without rupturing the ovary. If the ovary had ruptured the cancer may have spread. The pathology report came back showing that I have Ovarian Cancer stage 2C. My lymph nodes were clear. My ovary was cancer and so was the pelvic tissue. I start chemo in less than two weeks. My chances are very good because it was caught early. If I had waited to go to the doctor, I may be in big trouble.

Looking back I’m racking my brain trying to remember “did I have symptoms?”. The answer is ‘maybe’. --Maybe that time I had gas pains was a symptom, but it only lasted a day, I thought it was the spicy Thai food. I was fine the next day.-- If I had symptoms they were very vague. However, something in me told me to go to the doctor. Something in me made me not want to wait and watch the dermoid to see if it would grow or cause a problem. I wanted it out. Something in me made me act like I was going to be out of work for a long time, longer than the four weeks. I finished all of my projects. Something made me take this thing seriously before I even knew what it was. Maybe my symptoms were so subtle that I couldn’t hear them directly, but I still listened. Something made me not think, not question myself… I just did what felt right. It is like being on the side of a rock, you need to listen to your body, look around and make the move, feel your body getting there and not stop to question why you are on the rock to begin with. There is no room to panic. Just focus and do what you need to do, through determination and self-awareness. That is how I’m going to approach chemo. One day at a time, one move at a time and I know I’ll get there no matter how much it may knock me on my ***. I’ll get there.

Recently I've learned of a group called Climb for Life. It is a group of climbers raising awareness of Ovarian Cancer. I'm going to join them and do what I can. For more info see www.ovariancancer.jhmi.edu/climb

Good luck to all of you.

PART II

I want to update my story. I wrote it right after my first chemo treatment. I went through 6 chemo treatments and was declared "in remission" in July of 2005. I am approaching my two year anniversary of my dianosis this week.

I handled chemo well. I highly recommend getting a tattoo on a bald head. It doesn't itch and people don't look at you like you are sick. (they may think you are a bad a$$ but not a chemo patient - I liked looking like a bad a$$)

Since remission, my hair has grown back (curly all of the sudden). I've been going for my CA125 tests and my CT scans. I have super anxiety every time I have any sort of ache or pain. I call my doctor's office constantly and had 3 unscheduled CT scans because of my "symptoms".

I try to distract myself by fighting this disease. I knew when I got sick that if I was lucky enough to live, I'd do everything I can to kill this bastard disease. I owe it to the women who are much more worthy and much less lucky than I am. Too many of us die.

I'm dedicated to raising money and awareness for OvCa research and patient care for HERA Women's Cancer Foundation through rock climbing events. I like to put my story out there so that women can see me and how healthy I am. I want to give women hope. Last year I lead a team of 12 rock climbers on a journey that raised over $26K and this year we are going back.

It makes sense that I use rock climbing to raise the awareness. It was a fellow rock climber that urged me to go to a gyn ONCOLOGIST for surgery. I'm confident this decision saved my life. Also, rock climbing makes you feel as alive as surviving cancer does. It all fits for me.

It is my hope that together we can raise enough attention that some day there is a decent diagnostic test. I'm sick of having a heart attack every time I have a gas pain. I'm sick of second guessing the stupid vague CA125 test. I'm sick of wondering if the CT Scan missed something. I'm sick of reading stories of women who didn't make it. I'm sickened when I read about doctors who didn't listen. I'm sick of this disease and I want to kill it.

Here's to all of you. Keep fighting!

For more information on the HERA Women's Cancer Foundation, please click here.

Hey world, my name is Kayla Rogers. First of all let me tell you about myself then my story. I am 17 years old and a junior in high school and I am very active. I am on the swim team for school, I am active in the basketball program at school, I also have two jobs (on accident) I also am an officer in a club. During my high school years I have also been the editor of the school paper. Also, I am still active with my middle school Student government, coached cheerleading at a local ballpark, and my old middle school swim team. In middle school I was also very active. President of Student Government for 2 years, captain of the swim team all 3 years, yearbook staff, I was also in chorus and I was a cheerleader. Now that you know a little bit about the happy times of my life, let me tell you about the sadder years.

In my 8th grade year, in October I was looking in the mirror and noticed a lump on the left side of my throat, I was nervous and asked my sister if she saw it, I thought maybe I was seeing things; well she looked at it and saw it too. I went into my parent’s room and told my mom about it, it was so late that she didn’t get out of bed. Well I went back to bed and totally forgot about it because my throat wasn’t hurting that much anymore. A couple of months went by and it started acting up again. Long story short, I had surgery for that on April 17, 2002. Now on to the reason I am writing this.

On July 13, 2002 my family and I went out on my uncle’s boat to watch the Blue Angles fly. It was so much fun except we were out there for 18 hours about; when I go on the boat I don’t really eat. We went home and to bed. The next morning I woke up to go to my friends house for the week, well when I woke up I had some pain in my abdomen I thought it was cause I didn’t eat the day before or motion sickness from the trip. That day I went to my friends and hung out, we played a lot and ran around. By night time and time to go to bed it hurt so bad that I had to sleep with a pillow on my knee and sleep sitting up, the pressure from sleeping like that felt so good. By the 3rd day of not being able to sleep like a normal person or able to barely walk I called my mom crying in pain and she knows if I call asking to go to the doctor’s something has to be wrong. She called the family doc and they had no openings but my dad had an appointment so I went in his spot. By the end of the appointment he was making all these appointments for me. By the 21st of July I had 6 OBGYN appointments, 4 MRIs, cat scans hundreds of needles stuck in me and CAT scans. On July 22nd he told us I had to have an emergency surgery on July 23rd. he said the reason was because I have a tumor that is very large in my abdomen and I only had 2 months to live if we didn’t get it out and that it was OVARIAN CANCER. I cried from the time he said that till the meds kicked in to knock me out for surgery. I was 15 years old and my doctor told me that I was the youngest ovarian cancer patient that he had knowledge of. On august 6, 2002 I was to start my first day of treatment, but something else was more important, my first day of high school. I talked my doctor into letting me start the following Monday. He agreed if I promised to not to get out of it again. I did. So I started the first day with my two best friends.

The following Monday I woke up wanting to go to school bad but I knew I had to go to the hospital. I did 3 months of treatment, 3 months of home school, and 3 months of missing anything going on at school. Chemo didn’t make me sick. I still did what I do now but go to regular school. I went back the week of homecoming the principle had a big welcome back pep rally for me and the best thing was that him and SGA were the only people who knew I was coming back, see I was not supposed to go back till January, but I was well enough to go back then I could have went back the day of treatments started but the immune system thing. We surprised the school big time when I came back. Well now I am in remission and doing very good as you can see from the beginning of my story.

I wish the best for all patients and families and friends that have to go through the pain I did if not more. If you have any questions, you can email me at [email protected].

I am writing about my mother who at age 33 was diagnosed with ovarian cancer; I was only 13 at the time. She later passed away at the young age of 35 in 1991. My mother didn't have any symptoms besides a flu-like symptom which sent her to the ER. Unfortunately, they could not figure out the problem and was later sent to another hospital which gave us the bad news that the cancer was already spreading and was in her colon and stomach. She had surgery a couple of days later and rounds of chemo which made her extremely sick and weak and was not doing any justice. I will never forget when the doctors called my family and I in a room and gave us the news that there was nothing else they could do and was not able to have surgery for her stomach because as they stated they would not be able to close it up afterwards because it was that bad. I dont think I have ever cried so much in my life then I did that day. I am now 26 with 3 kids and wish I could have her here with me but God had other plans for her and I am grateful she is at peace and no longer in pain. However, it is still so hard without her and time does heal but I dont think it gets any easier, at least not for me. I get my yearly exams and urge every women to get theirs because it can happen to anyone at almost any age and it's a hard cancer to detect and takes so many women down a year because once they're told, it is usually too late. I would like to thank you for reading and say God bless to you and your family if you or a loved one is suffering. You just have to believe that there is a reason and God will help us all through this now and forever. I wish everyone the best of luck wether you have cancer or a loved one. It is just so hard but we can get through this. MAY GOD BLESS YOU AND YOUR LOVED ONES.

Updated November 29, 2004

I completed my chemotherapy treatment in August 2004. Apparently, my cancer resisted the treatment as my CA 125 continued to climb throughout the treatment phase. My CA 125 went to 550. I also continued doing my metabolic supplementation program during my chemotherapy treatment. That may have been a mistake as I came across two research studies which showed that the taking of antioxidants during chemotherapy treatment destroys the integrity of the chemotherapy drug.

In any event, I am still here and I have gone to an entirely new metabolic supplementation program that I have great confidence in. Additionally, I believe that my former programs have been effective in preventing metastasis and that's important. I believe that no matter my elevated CA 125, if my metabolic supplementation program inhibits tumor formation that's a victory in itself. My visit to the oncologist yesterday revealed no problems in the lower portion of my abdomen. My next visit is in late January 2005.

I am now 77 years of age and I am just going to keep on truckin and hope and pray that my program will either cure or control my cancer. My name is Dixie (my age is 76) and this is my story. In April 1999, two melon size tumors were discovered on my ovaries. Subsequently, I underwent surgery for the removal of my tumors and chemotherapy to destroy any remaining cancer cells. My cancer was classified as stage 3C epithelial ovarian cancer. In December 2001, the cancer returned and multiple tumors were seen on a CT scan. Additionally, my CA-125 rose to 440. I was advised that my cancer was both chemotherapy resistant and inoperable and nothing further could be done for me at that time. I was offered palliative chemotherapy treatment but rejected the offer and decided to treat my cancer with a metabolic supplementation program.

-------------------------------------------June 2004 Update-------------------------------------

Everything seemed to be fine until February 2003, when I suffered a seizure and was diagnosed with a metastatic ovarian tumor in the lining of the brain. I underwent brain surgery for the removal of the tumor but rejected radiation treatment to the tumor bed. Instead, I modified my supplementation program as an alternative. In May 2003, my CA 125 was 244 but in July, it fell to 34. That drop in my CA by 210 points indicated to me that my supplementation was effective. However, in December 2003, my CA rose to 66 and later to 121 (I previously said 123). In December 2003, a CT scan showed that two tumors disappeared and the majority of the remaining tumors were smaller than in December 2001 (some by over 50%). One tumor grew by less than a centimeter from December 2001 and one new tumor was observed of less than one centimeter.

In March 2004, I began to experience some discomfort in the lower chest area. Apparently, the tumor that grew between the years 2001 and 2003 continued to grow and was the source of my problems. Consequently, I began chemotherapy in March 2004. The chemotherapy treatment was a single agent carboplatin. I also continued with my supplementation program. My CA 125 level was 228 at time of treatment (I previously said 121). After the first treatment, my CA 125 dropped to 179, but after my third treatment, it rose to 280. I am worried that my cancer is resistant to both the chemotherapy and my supplementation program. I intend to make changes to my supplementation program in an effort to bring down my CA levels. Additionally, the oncologist is considering a different chemotherapy agent. However, the good news is that my pelvic area seems to be okay according to my oncologist. With respect to the metastatic tumor to the lining of my brain, my neuro/oncologist told me my brain scan was normal and said no further visits were needed. He said if anything were to happen it would have happened by now. That is all for now and I wish all of those struggling with ovarian cancer the best of luck. I am praying for you.

I am a 45 year old mother of 2 boys (age 4, and 6). Cancer cells were found during my regular annual pap smear exam. Because the cancer was not cervical – the doctor ordered more exams and immediately referred me to a gynecological oncologist surgeon. He performed a full hysterectomy on February 26, 2004.

The first thing I remember after surgery is my husband telling me softly – “It’s ovarian.” I was devastated. The surgeon came by that afternoon and confirmed I had stage 2C ovarian cancer and said I would need at least 6 rounds of chemo - taxol/carboplatin and my hair would fall out. I cried the entire night. It was horrible.

However – here I am 4 months past my last chemo – with new short, curly hair and a CA-125 count back down to 2.8. I feel healthy, happy, and strong and I hug my kids a just little bit tighter these days.

It was a horrible ordeal and I pray it will not return – but in many ways going through chemo was not nearly as bad as I thought it was going to be.

For those of you just starting this journey, I want to offer words of encouragement. First and foremost let me tell you – have hope! There are survivors. Cancer is not an immediate death sentence.

Second – you may do OK on chemo. I was stunned to find that during my chemo, I was able to function fairly well. I took care of my kids, went out with friends, even traveled to visit family. I had my down days - but usually not more than 3 days per cycle. For me – the emotional toll was far worse than the physical toll.

Here are some of the things I did that I found helpful:

1. I found the right doctor. Don’t be afraid to switch doctors! My first oncologist was so gloomy – I was in tears for days unable to cope. I switched. The new doctor gave me hope. It COMPLETELY changed my mental state and enabled me to function through the ordeal. It was the best thing I did.

2. I leaned on friends. They brought me meals, took care of my kids, and just listened when I needed to cry. I couldn’t have done it alone – don’t try.

3. I signed up to participate in a triathlon! I know – it sounds wild. It was the best thing I have ever done! It was a fundraiser for ovarian cancer research. I started by just walking around the block. Gradually I built up my strength. I swam, biked and walked in a Sprint distance triathlon on September 12th and with a group of friends we raised over $8,000 for ovarian cancer research. It was one of the most wonderful days of my life. (My web page may still be available: www.active.com/donations/fundraise_public.cfm?key=maryak).

I would encourage you to sign up for some physical event – a 5K, a bike ride, a walk – anything. It is specially rewarding if it is also a fundraiser for cancer research.

You will be surprised at what you can do. I am not at all athletic or specially strong. I took things very slowly and went at my own pace. I was amazed at my own progress. For me – it was a switch from being a cancer patient – to being an “athlete” in training. It was enormous. Training for a physical event is the opposite of being a patient and it felt fantastic. It made me feel healthy, strong and in control again. I can’t recommend it enough.

Finally – take each day one step at a time. You will have good and bad days. No one knows what the future holds. The best we can do is to deal with our challenges and make the best of our life.

My cancer may come back, I live with that every day – but I try not to focus on it. I enjoy each day and I am going to assume I am cured and live my life well.

To each of you – I wish you well. Good luck. Have hope. Live well.

Mary Anne Kobylka

Reality of what maybe: Ovarian Cancer as a teen

The pain woke me up. What's going on I thought. What's wrong? The tears began to run down my face when I realized that the pain wasn't going away. "Ahhhhhhh!" I scream and scream. "Shut up. Stop faking," my brother said. There was no position I could get in that would take the edge off. The first day was so unbearable. Nobody really knew what was wrong with me. My mom kept telling me, when I called her at work, that I was just constipated and that I needed to stop calling her. I'm alone and I'm in pain. I called the hospital and they thought that I was constipated too. I asked what I could do to help and they said that there was nothing really they could do because I didn't have my parents' consent. That day went by and then another. For some reason I had a doctor's appointment that day and hope filled me.

So I'm at the doctor's office and they call me and I go into the room. My mom's mad that she has to come to the doctor's office on her free time. The nurse comes in and I tell her my symptoms and immediately, she thinks that I have a urinary tract infection. I pee in the cup, wait and find out that that wasn't it. (I wanted that to know what was wrong with me. I wanted to get everything done and over with.) So the doctor comes in and I tell him my symptoms and he thinks that I have kidney stones. So he gets on the phone and askses what my insurance will cover. No catscan, but an ultrasound.

The next day at 4 p.m., I go over to the hospital and have the ultrasound done. (Talk about uncomfortable. Your bladder's full and they keep pushing on all your areas of pain. She looked at my kidneys on both sides and then my uterus and my ovaries. (Even though she could see this 14 centimeter cyst in me she didn't care to tell me even though I was right there.) So I have to wait until the following tuesday to find out if I there's something wrong with me. I go in and the doctor tells me that I have a 14 centimeter cyst on my left ovary. The next day I have to go in for a catscan. (The only reason I got to get a catscan is because I was in a life threatening situation. Once again the doctor knew something that they decided not to tell me. So the next day comes around and I go in and get the catscan done along with some blood work. By the way, you should know that many people have to suffer because of the cutbacks on things. Look at me as an example.) I have to go back to school with knowing something's wrong with me, knowing that this thing inside of me has to be surgically removed. Knowing that if it pops before surgery I could die. The next day I had to go to a specalist in Spokane to schedule a surgery day.

Along comes Thursday, November 4, 2004. It was a day surgery. I go in and get the bloodwork done, pee in the cup and go sit back down. Here I am this 14-yr-old girl that has ovarian cancer because of a cyst that the doctor missed on the pap smear three months before. Yes I am one of the lucky ones that gets the doctor who thinks that an abnormality on my pap smear is a yeast infection. It should have been obvious that that wasn't it when i didn't have an itch in my crotch. Now this cyst had been growing in me for more than a year. There was no reason for the doctor to assume it was anything else. Well anyway, I go down into the Iv room and they hook me up and start to give me the stuff they give to people before surgery........

I come out with an anxiety attack. They think that it because of my own fault when really I am allergic to the anaesthetic. My mom's telling me to shut up and I'm telling her to leave me alone. She says that I need to get ready for home. It's obvious that I need to stay in the hospital and the doctors try to tell my parents and they think it's because of how they were acting. (I have no idea why my parents act the way they do. Maybe a bad childhood, who knows?) Eventually the nurse get my parents away from me so that I can start to relax and get some oxygen. After about an hour the anxiety attack stopped and I was able to threw up and calm down. Everything's pretty much went smoothly from there. My belly button and my pubic region where they cut hurt as well as the arm that my IV was in, but I was comfortable and I was warm.

Now a week later I'm still in pain both my arm and where they made the incisions. I now only have one ovary and one fallopian tube. Lately my emotion state hasn't been good, but I'm a strong-willed person.

On August 13, 2004, my life changed forever. Now I am not a superstitious woman, but August 13 happened to be on a Friday, too.

Since early June I had been feeling a sense of heaviness in my pelvic area. Suspecting it was a urinary infection, I debated whether to go to my family doctor or my gynecologist. The gyn's nurse told me up front that they catheterized patients who come in for UTI's, so I decided to go to my family doctor who I knew would just test my urine and write me a prescription. How I wish I had gone to the gynecologist first - it would have saved me two months of valuable time. By the way, I was catheterized in the hospital and it was no big deal - didn't hurt in the least.

My family doctor prescribed medication for me and I did feel some relief. Ten days later the discomfort came back, and another medication was prescribed. No real change this time, so I asked the woman practioner to give me a pelvic exam. She told me she couldn't feel anything, but send me for an ultrasound which confirmed an 11 cm. mass. This didn't alarm me as I'd had a fibroid before and figured I had one again. The ultrasound report said that it could be either coming from the ovary or the uterus, so an MRI was ordered. I had also had ovarian cysts (the kind that have solid components on the ultrasound because I had bled into them) which were almost gone by the next ovulation, so I wasn't particularly worried.

The MRI results were back on Friday the 13th. I talked to my doctor that morning. She prefaced her report with the sentence, "It could be benign, but I want to get you in with (a gyn-onc) for an appointment as soon as possible." She went on to tell me the mass was definitely coming from my ovary and that the report stated that some ascites was present.

At the mention of the words "oncologist" and "ascites" my whole world changed. I was calm over the phone, but my anxiety increased as the day progressed. By the time my family doctor called me I was a mess. I shared my fears about going through chemotherapy and end-of-life pain.

A CA-125 was immediately ordered for me. I wasn't told the results for 10 days. I finally heard the results one day at work - it was 317! With this news I felt that my chances of the tumor not being malignant were pretty small. To this day I am amazed that I kept doing my job for three hours, without falling apart.

The local gyn-onc was booked so I took matters in my own hands. I called Hershey Medical Center, described my situation, and was seen within two days. My surgery was scheduled for 2 weeks later, on Sept 8, 2004.

I was diagnosed with Stage 2, Grade 3 ovarian cancer, and given a TAH/BSO. Although the cancer had not spread to my uterus and fallopian tubes, an area of my pelvic sidewall where the tumor had touched it contained cancerous cells. It turned out that both my ovaries were affected, not just one as the MRI and ultrasound had indicated.

Being told I would need to have chemo was a major disappointment, as I hoped my cancer had been caught early enough that I could bypass this. Unfortunately, I had a grade 3 tumor which would have made further treatment necessary even at stage 1.

The first few days after my surgery were rough, but at about 3 weeks I began feeling more and more like my old self. Just when you really start feeling good, then you have to start the chemo.

Even three months ago I did not know I had cancer. I never thought I would face something like this. Of all the things I worried about, cancer was not one of them.

I will say that God gives me the strength to handle this, everyday, as I need it. I know that I have been surrounded by prayers because for the most part, I have felt a strong infusion of peace. I pray that I can have a good life in spite of this, and that I may live long enough to see my fourteen-year-old daughter grow up.

Three years ago, 2001, I was diagnosed with ovarian and endometrial cancer. I was told by the consultant surgeon that I had the tumors for at least two years. I had the usual symptoms, pain, bleeding, heartburn at night, and irritable bowels. Yes I did go to the doctor with these symptoms a year prior to diagnosis and was given tube of hormone cream for a dry vagina! In desperation I changed doctors and was immediately sent to a consultant and within four weeks had an operation to remove the much enlarged uterus, my ovaries, and a tumor. This was followed by chemotherapy six weeks later and a year later, radiotherapy was required for further growth of a tumor. I enjoy my life doing as much as I can. I find much beauty around me, the sky, flowers, birds, and animals. There is much I have never had time to appreciate, now I can. My daughter is now at medical school, I hope I can hang on to life long enough to see her graduate as a doctor. I wish all fellow sufferers love and strength to carry on. Bless you all.

In August 2003, after fainting several times from loss of blood, I was admitted to a hospital where I had a full hysterectomy done as I was found to have Endometrial adenocarcinoma. It was stage IIIa mixed papillary serous and clear cell carcinoma of the endometrium. This cancer was not like the normal uterus cancer where the survival rate after treatment is better than 85% but was a rare form of Uterine cancer like Ovarian in nature and the survival rate is 5% to 10% after 5 years from treatment.

My CA 125 after surgery was 50 but went down to 30 following first chemo of carboplatinum/epirubicin but increased to 58 after 3 lot of chemo (carboplatinum/epirubicin ). I then had 6 weeks of radiation treatment and CA 125 went down to 14. Subsequently, I had another 3 chemo (carboplatinum/epirubicin) but CA125 went back up to 140. A CT scan picked up 2 cm new cancer on the left side in fatty area just under my left hip bone. Subsequently had a further operation to remove the serous and clear cell 2 cm cancer and omentum. The oncologist gynecologist surgeon who did the operation could not find any further cancer and was quite hopeful. However, my CA 125 after second operation was 78 . This means that the cancer is still there and all my doctors do not recommend any further treatment at this stage until it becomes visible on a CTscan. All my doctors feel that this cancer will kill me as they do not know what, if any, chemotherapy they can try as no scientific studies have been done on this form of cancer. Can anyone suggest what I should do now? I live in Canberra ,Australia at 89 Owen Dixon Drive, EVATT A.C.T. 2617, Australia (phone 02-62582977, country code 61) with my husband and 3 children ages 14 to 18. I repeat that even though my cancer is Uterine it is like Ovarian in nature and treated like Ovarian. However, although the type of chemotherapy treatment for Ovarian cancer with this serous & clear cell type is known (I think) the Mediacl oncologists here do not know what chemo treatment is needed for my Uterine cancer with serous and clear cell (like that found with Ovarian cancer) . They are treating it like Ovarian but the chemotherapy (carboplatinum/epirubicin) is having minimal affect on my cancer! The radiation treatment had a good effect but I can only have so much radiation without that killing me. I can have further chemotherapy but do not know which one to use. I am praying to God to help me to cure me from this dreadful disease.

I REALLY NEVER thout about this but iam not the best preson in the world and som times i fill lonely and i do not know what to do in life have you ever felt that way ? well im not realy agood person at all but nobody is prefect thats part of life

I was diagnosed with ovarian cancer September 27, 2001 during an exploratory surgery. My cancer was Endometrioid Adenocarcinoma (left salpingo-oophorectomy), weighed 10lbs., the size of a watermelon. I was given six treatment of Carboplatin/Taxol chemotherapy; therapy was administered three weeks apart.

I had regular pap smears and pelvic examinations twice a year beginning in 1987 until 2000 with no irregular results. I experienced the following symptoms over a period of time: weight gain, edema, pelvic swelling and tenderness, amenorrhea, fatigue, rise in blood pressure, headaches, frequent urination, acid reflux, depression, pulmonary embolus, sleep apnea and umbilical hernia.

My symptoms that went undiagnosed:

1986 - dysphasia stage 3 - removed with laser surgery
1990 - pelvis swelling and discomfort
1992 - pelvic enlargement and tenderness, amenorrhea
1993 - amenorrhea, weight gain
1994 - enlargement on left side of pelvic area (I looked lopsided)
1997 - edema, emotional, angry and fatigued
1998 - fatigue, anger, weepy and lack of concentration, rise in blood pressure
1999 - headaches, fatigue, anger, weepy and lack of concentration, frequent urination at night
2000 - pulmonary embolus, extreme fatigue, comprehension problems, frequent urination at night, acid reflux
2001 - out of breath easily, severe edema, umbilical hernia, problems w/short term memory retention, comprehension and concentration, severe edema
2001 - August, severe abdominal pain in emergency room, CAT scan of abdomen nothing found
2001 - September, Ultrasound performed - Exploratory laparotomy - Endometrioid Adenocarcinoma, Left salpingo oophorectomy. Removal of 10 lb. Endometrioid Adenocarcinoma the size of a watermelon. CA125 taken right before surgery 66, taken after surgery 18.
2001 - Life port inserted (chemotherapy port)
2001/2002 - six rounds of chemotherapy (Carboplatin/Taxol)
2002 - incision hernia
2002 - October 2002 after six rounds of chemotherapy, Abdominal hysterectomy (Cervix - Chronic cervicitis w/ naothian cysts. Endometrium: Benign secretory phase. Myometrium: Adenomyosis
2002 - removal of Life port
2002 - CA125 at 10
2003 - CA125 at 6
2003 - incision hernia (muscles are not holding together after surgeries, meshed)

- Complete body hair loss after third treatment
- Muscle cramps
- Exhaustion
- Depression
- Lack of concentration
- Decision making problems, lack of comprehension of what I read
- Short term memory loss
- Long term memory, problem w/recall
- Hearing and understanding what I heard problems in conversations
- Anger

Name: Mrs.Nehal Amit Pagedar. Age: 38 years. Dx: Serous Cystadenocarcinoma. Mrs.Nehal Pagedar, age 38 yrs was diagnosed with Ovarian Cancer in July 2002 and since then she is undergoing treatment. Presently we are monitoring her CA-125 level. Right now she is physically ok but still she cannot work as she used to work 2/3 years back and has developed big cracks in both her feet. Her mother had ovarian cancer and she expired at the age of 55 some five years back.


Details of my Wife's treatment.

She has undergone 7 cycles (before operation 4 cycles and after operation 3 cycles) of chemotherapy from 22.07.02 and the last cycle was completed on Feb. 26, 2003 . In between she was operated in the month of November '02 and her both ovaries, uterus, omentum and umbilicus was removed. A tumor came out of her umbilicus for which the histopathology report says, "Section shows histological features of poorly differentiated large carcinoma involving skin and subcutaneous tissue metastatic carcinoma”. Omentum does not revel any cancer. Now there are no more chemotherapy. During all seven cycles, she was administered Mitotex (280mg) and carboplatin (600mg) drugs. It was diagnosed as Serous Cystadenocarcinoma. After that we are regularly monitoring her CA-125 value. She had undergone CA tests on March 28, 2003 and the observed value was 4.39 U/ML. Again CA test was carried out on May 17, 2003 and the observed value increased to 8.96 U/ML. On July 4, 2003 CA-125 showed 8.01 U/ML, on September 11, 2003 it was 4.95 U/ML, on December 2, 2003, it showed 6.92 U/ML and last done on Feb. 16, 2004 it elevated to 17.48 U/ML. Last CT Scan report which was done on May 28, 2003 (after finishing 7 cycles of Chemo) shows, " Liver shows diffuse hypodense and appears enlarged in size. Left lobe is predominantly affected seen reaching up to left lateral wall. Liver shows small well defined intensely enhancing lesion in 8 of right of liver”. These lesions are same in size and appearance compared to previous CT Scan of Oct. 25, 2002 (i.e. after 3 cycles of chemo). Size of lesion appears similar to previous MRI of July 17, 2002 (MRI done before starting of Chemo treatment). These findings are suggestive of small vascular lesion like haemangioma. She has a relapse again in April 2004 she had a relapse and underwent three cycles of chemo consisting cisplatin and gemcitibine. After that, CT was performed and was shown that the tumor was dissolved and now waiting further.

I am an Ovarian Cancer survivor from Montana and moved here (Utah) last year. Two years ago, I had a cold and coughed quite hard and pain went through my body like a knife. The next day, after 5 hours of surgery, the doctor removed a 6lb, football sized tumor. (And i am not a large woman!) I had no idea I had cancer. The only symptoms I had was heartburn, which started a month before the tumor ruptured and a little bloatness, which my doctor's nurses thought might be attributed to an ulcer, so treated me for that.

It took me a little while to get over my anger that this was not caught earlier as i had been to the doctor 3 months prior, talking of pain and discomfort. I am very much aware of how lucky I am to be here, so I am not angry anymore.

I was thinking about talking to someone about lobbying to have ultrasounds or something available to women to detect this cancer. I am obviously here for a reason, not too mention an angel must be watching over me. The cancer was contained to that tumor and did not spread, God only knows why. I think something more has to be done to detect this cancer early. I read everyday women dying from this cancer.

If anyone has any thoughts or suggestions or if I can be of some help, please email me and let me know. If I can help one person, I know my efforts have not been wasted. Thank you in advance for your time.

In 2002 I had been having a lot of problems with what they thought was IBS. I had tests including a colonoscopy and they were normal. I continued to have pain and diarrhea a lot. I also had been having such heavy periods I became very anemic. I was given lots of iron, of course, and a low dose BCP to make my periods light. That got a lot better. But then, I began to have a lot of low back pain and eventually pain down my left leg. I went in for the problem and was given excercises to do, etc. The pain did not resolve, so finally I had an MRI done, which revealed an ovarian mass. I saw a gyn/onc right away and he did testing including CA125, which was normal. We decided to do a total hysterectomy, given my age, which was 47 at the time. I woke up to the news it was cancer. Stage one clear cell. I had 6 rounds of carbo/taxol in '02, and have not had a recurrence. My younger sister is now having an ovarian cyst looked at and will have surgery soon to make sure it is benign. It is September as I write this.. ovarian cancer awareness month! Get out the word! Ovarian cancer is hard to detect, but there are some warning signs! Let them know what they are! You can learn all about it on the homepage of this site! Click on Understanding Ovarian Cancer, and there is a button you can press on that page to send the info to all your friends and family. I am one of the very lucky few who have had their cancer discovered early...and I thank God every day!

Hi, my name is Vickie Robbins. About a year ago I was diagnosed with ovarian cancer. I was 39 and in good shape. The doctors told me it wa a cyst and it was on the left ovary. It was 11 cm cyst and my ovary was enlarged and my doctor was sure it was not cancer. He went in and remove the damaged ovary and a week later, I found out it was malignant tumor and it was contained to that one ovary. I didn't have a full hysterectomy and now I live with the fear of it returning. Thank you.

This is Monica's story... In July of 2002 my bright and beautiful sister Monica was diagnosed with stage 1C ovarian cancer. For several months prior to her diagnosis, Monica complained to me about some vague discomfort that she had and figured that she had either an ulcer or a problem with her gall bladder. She indicated that the pain would come and go, but felt it was manageable. After several months of these vague symptoms, Monica finally went to see her doctor who immediately requested a sonogram. Her gynecologist noticed severe endometriosis and as a precautionary measure ordered a CA 125. The results of her CA 125 were abnormally high, however, her doctor wasn't overly concerned because many factors can cause an elevated CA 125 like endometriosis. The doctor ordered her surgery asap. Monica's doctor didn't wait to finish my sister's surgery before informing my family that she did indeed have ovarian cancer, and that we would have to take her elsewhere for follow up care. Her doctor indicated that Monica's tumor seemed to be confined to one ovary so she left Monica's remaining ovary and uterus intact. Monica was released from the hospital several days later and made plans to go to the hospital we thought was one of the best in the nation, Memorial Sloan Kettering. After an examination and testing at Sloan, Monica was informed that she had two additional tumors in her uterus. On the day of her surgery to remove these tumors, our family was informed that Monica not only had ovca but also uterine cancer. Her surgeon was hopeful that Monica's cancer had not spread into her peritoneal cavity. Her doctors prescribed six months of chemo followed by 25 consecutive sessions of radiation. Monica felt good and seem to be back in good health.

In April of 2003, Monica finished her treatments and was told by her doctors after a CAT Scan and other testing that she could consider herself healed and cancer free. Within several weeks of this good news, Monica began to feel slightly bloated, her back ached and she felt constipated. When she called upon her radiologist, Monica was informed that these were probably side effects of the radiation and that she might be slightly impacted or have an obstruction. We were told to give her enemas and laxatives in order to clear out her system. In June with still no relief in sight, Monica's radiologist finally told her to come in for review and was immediately referred back to her main oncologist at Sloan Kettering who diagnosed her recurrence. WHO KNEW???? At the time my family had no idea that ovarian cancer was a chronic disease!!!! We aren't stupid and really thought we researched this disease, I guess we must have missed the chapter on recurrence. When Monica was brought in, she was drained of 13 liters of fluid! She was given two rounds of chemo interspersed with the draining of her peritoneal cavity almost weekly but the cancer was too aggressive. My gentle, kind and loving sister Monica died on September 24, 2003 at the age of 38 years old. She left behind her parents, five sisters, nine nieces and three nephews. We miss her desperately. As I get ready to sign off, I want all of you who have ovarian cancer or may be touched by this disease either through a friend or loved one, you are forever in my prayers. May God bless you and give you the strength you need on this journey.

My mom was officially diagnosed with ovarian cancer back in 1994. I was 1 year old at the time and really didn't understand. There was little doctors could do because the cancer had remained hidden for years inside her ovaries. My mother never knew because she didn't have any health insurance so by the time she felt sick enough to get medical attention it was too late. I watched the woman who i admired lose herself. She died in March 1996 just before i graduated from high school. Today I am a 25 years old, mother of two boys and everyday I think about what would happen to them if I became ill. The effects of my mother's death at such a young age still bothers me to this day. That's why I believe that it is very important for women to get annual check-ups and be aware of any changes in their body. To everyone I LOVE YOU ALL.

On January 7, 2003 saw family doctor - complaints swelling, loss of appetite and just not feeling good. (Had regular gyneology exams in November and December of 2002 with specialist. Irregular findings but nothing indicated cancer - medication to clear up problems.) Family doctor sent me to the local hospital for ultrasound looking for gall stones. Scan showed stones. Saw Surgeon on January 21, 2003 to schedule surgery. Sent me to local hospital for CAT Scan - didn't like the looks of abdomin. January 23, 2003 surgeon's office called to cancel surgery - results = possible cancer - mass on right ovary. Gyneocologist explained results next day. Naturally blood pressure was high so went to Cardiologist to check out for surgery. Gyneocologist made appointment with Oncologist/Surgeon at Ochsner Foundation Hospital in New Orleans - he confirmed that I had Ovarian Cancer - sent to pulmonary specialist to remove pint of fluid under left lung - tests of this fluid revealed Stage IV Ovarian Epithelial Cancer. We have a local Cancer Center here so I started my treatments here - Ochsner and Cancer Center specialist conferred on treatment - Taxol/Caroplatin for three sessions - complete hysterectomy - then six more sessions of Taxol and Carboplatin - CA 125 got down to 44 and then stopped working. Had to start on Procrit shots because of blood work - On 10/24/2003 started taking Gemcitabine(Genzar) and Cisplatin.Platelets went down and was not able to take as directed. On December 2, 2003 changed medicine to Doxil. After three sessions of Doxil CA 125 showed no improvement - changed to Gemzar alone with lower do I am now on Topotecan and this one has given me bad side effects but nothing I can't handle. I have had six sessions of this medication. Will be taking CAT Scan after two more sessions. Four small doses with two weeks between treatments. I am feeling well but from what I am told by my gyneocologist/oncologist/surgeon, I will not get into remission, but life goes on. I still bowl, go to church, gamble, play cards, etc - everything I did before cancer struck. I feel that I do not want to give up on the medications. I feel that between medication and God, I am still alive and without pain.

UPDATE

I am submitting this story on behalf of my mom Deanna "Dee" Bonvillain because I know she has posted her story here before. I wanted to let you know my mom passed away on April 23, 2005 from Stage IV Ovarian Cancer. She fought for 2 long years. We were all shocked that this happened so fast. My mom had the best attitude while battling cancer and we thought she would beat this illness, but we were wrong. She died in peace with no pain. I was there when it happened. I always said that I wanted to be there when it happened. I wish all of you the best of luck and I hope all of you have the same attitude my mom had.

I just found out for sure today that I have ovarian cancer and it's in Stage 3. I'm terrified I've never been through anything like this. I just got out of a relationship that I had been in for 4 years just last week and now I find this out. It's just a lot on my plate right now. My biggest fear is of dying. If anyone can offer me some help or advice I'd appreciate it. You can e-mail me at [email protected]

WANTED: Doxil Success Stories

I was diagnosed with Stage IV clear cell OVCA on 2/18/03. After 2 treatments of carbo/taxol, disease progression, 2 treatments of topotecan/etoposide, disease progression, 2 treatments topotecan, disease progression, 2 treatments cisplatin/gemzar 50% reduction in disease, 2 addtl treatments cisplatin/gemzar disease reduced to two 4 mm dots in lungs and liver. I was having back pain all along but the bone scan did not show anything significant but because it became more painful I had an MRI that showed bone metastases. Stopped chemotherapy and began radiation therapy for pain control. Two months later the CT scan showed tumors are back in the lungs and liver and not much success in bone pain control because it's so extensive in my pelvis. Continuing radiation therapy but will begin Doxil today. Can anyone share a Doxil success story - and perhaps what to expect on Doxil. Has anyone else used radiation therapy with Doxil? Anyone know of anything new out there for clear cell OVCA? Thanks for any info you may have.

My story began in August 2003, when I went for my regular GYNO appointment for routine exam and my doc "felt something." I cringed when she pressed on my ovary, and she immediately insisted I go for a sonogram. The sonogram results showed two cysts, one complex in my right ovary and one simple in my left. She insisted I meet with an oncologist as soon as possible and have them out. I remember asking "could it be...?" Her response was "oh no, because your so young (just turned 26) and have no family history, it's extrememly 90% unlikely these cysts are malignant." So I met with the onc, who examined me and determined that it "could be endometriosis." With that suggestion I went to see a reproductive endocrinologist (because I wanted to believe it was endo, and not Cancer). He did another sonogram and the cysts hadn't changed, so he suggested I go on the pill and check the sonogram in 6 weeks to see any changes, that would give us a better idea of what the makeup of the cysts were. That's what I did, and in 6 weeks, the cysts were still there and hadn't shrunk and one had grown slightly. He decided to do an exploratory laproscopy.

On December 30th, I had surgery where my doc knew immediatly that the cysts were cancerous. He had an oncologist on hand, who agreed with the diagnosis, conducted several biopsies and woke me up. The final pathology reportd declared the cells were "borderline ovarian cancer." It was suggested I have both ovaries debulked, in attempt to preserve my fertility, but to remove the cancerous cells. I met with several onc's to get opninions. It was decided I was to have a laparotomy to see what of my reproductive organs can be saved.

On January 27th, I had such surgery which left me with only a piece of one of my ovaries. It was then determined that not only did I have borderline cells, but malignant cancer as well and I had to wait a week for the final pathology reports back. That week of waiting was agony. But the call came, that said I was diagnosed as a stage 3a due to spread of cells to my abdomen and that I needed chemo to begin right away, and would need to have another surgery when it is over. So, I went through my six round of carbo/taxol and that was the first time that I felt strong, because I for the most part tolerated it very well. Each week my CA 125 dropped lower and lower and I began to feel hopeful that maybe I could go into remission. Now, it is July and I am going for my second look procedure tomorrow, which will remove my remaining ovary and attempt to leave my uterus to again perserve the chance of bearing children. Also to determine if the chemo did indeed work, or would I need further treatment. I think this is the most anxious I have been through this whole journey so far. A journey that I hope will end tomorrow.

Reading all of the stories on this website have helped me so much to cope with my mother’s diagnosis of ovarian cancer that I felt very strongly about sharing my story with all of you, in hopes that my story may help or comfort someone like the stories on here have helped me.

I always thought that cancer was something that happened to other people. I come from a very large extended family and we have all been very fortunate thus far (knock on wood) when it comes to life threatening illness, tragic accidents, etc. I should have known that my family is not invincible and eventually this run of good luck would have to come to an end. I just didn’t know it would hit this close to home or to my best friend, my mother.

My mom, Cathy, started experiencing some stomach pain in February 2004. She is 53 years young, and she was finishing menopause, so she chalked the pain up to indigestion as it was not a constant pain and only affected her every so often. In April of 2004, my grandfather, who had been in a nursing home with Alzheimer’s Disease for almost two years became very ill and died on April 20th of liver failure. Right about this time, my mom noticed a mass in her abdomen when she laid down for bed one evening. My mom and the rest of the family were grieving the loss of my grandfather and were busy arranging the memorial service. A few days after my grandpa’s passing, my mom pointed out to me that she had a mass in her abdomen and that she was sure that it was cancer. I told her that she needed to make a doctor’s appointment immediately, as it could be any number of things, like an ulcer and that she shouldn’t think the worst.

My mom called her gynecologist and made an appointment for June 8, 2004 as this was the soonest they could her in, even though this was about a month and a half away. My grandpa’s memorial service was on May 15, 2004 and my mom noticed that the mass in her abdomen appeared to be growing. She was quite swollen and bloated looking and the amount of pain she was in was increasing greatly. On June 8, she went to her gynecologist appointment and her obgyn immediately did some blood work and ordered a CT Scan. The doctor told my mom that she would contact her on the following day to let her know what the results were. On June 9, 2004, I closed on my first house and what was supposed to have been a fun, celebratory day turned into our worst nightmare. My dad came into my new home, as I thought we were going to start painting. Instead of bringing in paintbrushes and drop cloths, my dad told me, with tear-filled eyes that my mom had heard back from the doctor and that she had Ovarian Cancer.

Her ObGyn told my mom that the CT Scan showed 8-10 inch mass and that it was attached to her ovary. Her CA-125 came back at 475, which the doctor said was consistent with a malignancy. She was referred by a family friend to a group of gyn/oncologists that were supposedly the best in their field in the area. She met with him on Friday and surgery was scheduled for the following Wednesday.

Preparing for surgery was one of the hardest things ever. The fear of not knowing what the outcome of the surgery would be was weighing on all of us and we just wanted this ‘thing’ out of her as soon as possible. The surgery went well, and two tumors were removed; one from the right ovary the size of a soccer ball and one from the left ovary the size of a baseball. Cancer cells were also found in the peritoneal wall but all of the other organs looked healthy. The gyn/onc did a full hysterectomy, removing the ovaries, cervix, uterus, fallopian tubes, peritoneal wall, omentum, and several lymph nodes from the pelvic area and tissue samples from the surrounding organs. We had to wait for the results from pathology and my mom was out of the hospital by Saturday, June 19, 2004, leaving the hospital with a soccer ball signed by all of her visitors and a large vertical incision from a few inches above her bellybutton down to her pubic bone.

Today, Monday, June 28, 2004, my mom had her follow-up appointment to discuss her pathology reports and a course of treatment. She has been diagnosed with Stage IIIc Ovarian Cancer because microscopic cancer cells were found in one of 24 lymph nodes that were biopsied. Microscopic cancer cells were also found in two adhesions on her bowels and in the lining in her pelvic area. She will have to undergo six rounds of chemotherapy in three week intervals, and with this treatment, combined with my mom’s young age and her overall great health, he thinks that she will kick this. I hope so.

For all of you that have been affected by this horrible thing called cancer, please know that you are not alone. My mom doesn’t understand why this happened to her, but refuses to think of herself as a statistic. We all, I am sure, are aware of the high mortality rate associated with Ovarian Cancer, and my mom has been told that she has a 50/50 chance of five year survival, but someone has to be in that 50% that kicks this, right?!? Please know that I am praying for all of you that have suffered or watched loved ones suffer from this disease and that all we can do is take each day for what it is…and that is another chance to laugh, cry, hope, dream and most importantly, another chance to let those around us know we care.

This is my mom Josie's story. She was diagnosed with ovarian cancer in October of 03. In this case, the fluid that had been accumulating in her abdomen was a blessing, because we could finally say to her doctor "what is going on here she is 82 and looks like she is about to have twins?". She had been in the hospital for two weeks several months prior. When we went to the office for her appointment the doctor that she had been seeing for 14 years stood at the other side of the room. He listened to her lungs, because I had said she is having a little shortness of breath. He said "she has sounded worse" but he wasn't touching her except with his stethoscope. I said to him "can't you see her legs are swollen?" At first he said that they looked normal, but I insisted and said that normally she has legs like a stork. Then he actually touched them and said they had fluid. After two ultrasounds, she was tapped because she was having trouble breathing. The ensuing pathology report indicated there was a positive CA125 marker report and she was sent for a CT. At that point, after loosing all confidence with his abilities as her primary, I like a protective mother I kicked into overdrive. I called Memorial Sloan Kettering to get some input I could trust. My anger at his lack of help once the shoe dropped still leaves me speechless at times. He told me over the phone that I shouldn't try to rush things since it won't make any difference. He told me not to say anything to her at all. Josie is not someone that you hide things from. Last January she verbally ordered him out of her hospital room and ordered that he not come within 100 feet of her ever again. Mom is a fighter. She started Chemo, Cisplatin only in October then after two chemos they added Carbo. Since she is 82 and this winter was brutal, the trip into NYC was more debilitating than the Chimo. She transferred the administration of the Chemo closer to home. The chemicals used to date are Cisplatin, Carbo, Taxol and Doxal. Currently mom wants to exhaust all the chemical options before Surgery. It is her body and I must respect her feelings and her choice.

My wife Karan was diagnosed with ovarian cancer in February, 2001. Her gynecologist had been "watching" a tumor in her abdomen but was sure it was benign. When Karan saw her mother die of breast cancer that had spread to her lungs, she decided to push for removal of her own tumor. I remember sitting in the waiting room during surgery thinking this is taking way too long. When the gynecologist finally came down, she looked worried. I was shocked when she told me that Karan's tumor was malignant and a gyn/onc had been called in to finish the surgery. Dr. Barnes came down later and I was numb as he talked me through all he had done and would need to do. I did not have the heart to tell Karan when she arrived from the recovery room. Early the next morning Dr. Barnes tried to tell her and she could not believe her ears. Soon she was fighting to recover from surgery and gear up for chemo. She handled six rounds of carbo/taxol like a trooper. In the midst of this, we moved from Birmingham, Alabama to Silver Spring, Maryland. She continued her treatments under the care of a different Dr. Barnes at the Lombardi Center.

Over most of the next three years, relentless intense hot flashes were her worst enemy. We moved to Atlanta and Karan returned to the care of her original Dr. Barnes in Birmingham. At a routine quarterly check up with Dr. Barnes, Karan failed to mention some stomach/bowel discomfort that had started recently. She thought it might have just been a stomach bug. Her CA125 came back the usual seven. She did follow up later with a GI doc who, after an unremarkable CT scan gave her IBS meds that didn't seem to help. Then one evening we were watching a funny TV show and she got a sharp pain in her shoulder. We assumed that she had probably over done it with some drilling into ceramic tile in the bathroom. This pain lingered for weeks and the heating pad became Karan's new best friend until we finally went to our family doctor. An X-ray didn't reveal much and a trip to an ortho doc got us some Vioxx for the pain. Then came the next check up with our gyn/onc. Hearing the symptoms, he ventured a hopeful guess towards gallbladder. We liked that guess but after a CT scan and another CA125, we all knew the cancer was back.

Karan was at the mall with her daughter when she got the call from Dr. Barnes. We were all in shock. Hope is a wonderful thing to hang on to but when the realities of cancer come crashing down, hope is ripped away and replaced with fear and anxiety. While waiting for the next surgery we ran to Florida to get away from our lives. But the pain and fear increased so we called our nurse and we were able to move the surgery up.

We met with Dr. Barnes the day before surgery to plan strategies. Because Karan was young (52) and in reasonably good health, he wanted to be aggressive. He would start with laproscopic surgery to see if Debulking was a good option and if so install a port in her abdomen for intra-peritoneal application of chemo. We had complete faith in Dr. Barnes plans and skills. The next day, just a half hour into surgery, I got a call from the OR nurse saying the laproscopic look revealed that continuing with surgery was a solid choice. It was then a couple hours later that Dr. Barnes met with our Pastor and me. Surgery had shown things exactly the same as the pictures from the CT scan. Three new tumors, two involving the intestine/colon and adhesions on the liver. He was to able to remove all visible cancer and also removed small sections of her intestine and colon. His primary concern at this Point was recovery from the surgery, but all had gone very well.

Karan's recovery seemed to go well over the next week as we returned home to Atlanta. But the evening of our return, she had intense pain in her hip and unfortunately, the pain meds seemed to trigger vomiting and diarrhea both. We were on the phone to Dr. Barnes and after a very difficult night ended up calling 911 for a ride to a local emergency room. They used x-rays to check for a bowel obstruction and did blood tests that showed her potassium was low. They stabilized her over night with pain and nausea meds and sent us home the next morning. We made it through that night but by the following morning, Dr. Barnes was recommending that we return to Birmingham.

Karan had an "ileus" or partial small bowel obstruction. We spent several more days in the hospital and she finally ended up having an NG tube put back in to decompress her stomach. Finally some progress just in time to receive her first round of chemo. This time Dr. Barnes had decided to use cisplatin IP and Taxol IV. Lots of vomiting and diarrhea followed the first treatment and several more days in the hospital. Three weeks later we were back in Birmingham for the second treatment which wasn't much easier than the first. By now Karan's veins were shot so she had another port installed in her chest.

At this point we made a decision to seek out an Atlanta gyn/onc in hopes of finishing treatments without the drive to Birmingham. Beverly Bentley, the head of the Georgia Division of the National Ovarian Cancer Coalition was a great help throughout our struggles and lead us to Dr. Burrell. After Karan's first very thorough exam she was convinced that he was her doc. He modified our protocol to cisplatin IP on day one and Taxol IP on Day 8. This was much easier for Karan to handle and the care she receives at the Northside chemo spa is tremendous.

Karan has two treatments left to receive. Dr. Burrell has done two CT scans and noticed improvements in several areas with no new signs of disease growth. Her CA125 while rising to the 150s during IP treatments has now plummeted to the 20s. By the end of July Dr. Burrell will remove her abdominal port and do laproscopic look see surgery to check our progress.

Karan is a fuzzy bald and her tiny body is scarred from surgery and tired of chemo but her spirits are good. Our love is stronger than ever and we have learned to truly appreciate each moment we have together.

I still remember the day that I found out that my best friend, my mother, was diagnosed with ovarian cancer. I was in the hospital after just giving birth to my twin daughters, her first grandchildren. My father had just been diagnosed with stage IV colon cancer a month prior. I began to wonder if I was given two beautiful babies because I was going to lose two other people in my life. After surgeries and hospital stays, my mother was completely exhausted. She lost her beautiful hair and was embarrassed by her dark circles and drooping skin. But she was still the most beautiful woman I had ever seen. For six months she was a caregiver to my father, a loving grandmother, and my mother. She was not a cancer patient or a victim. She did not want anyone to feel sorry for her. Even though she was in so much physical and emotional pain she greeted each new day with a smile and a sense of hope. My father died on October 15th, a little over six months after his original diagnosis. I think after that my mother was ready to go and be with him. She died a little over 3 weeks after my father. I just want everyone to know that they need to get checked regularly.....you don't want to leave your children parentless…

I am a 27-year-old nurse from Indianapolis, IN. I work in an area where we tell our patients that if they have any chest pain, go to ER fast. I should have followed my own advice. I thought it was just cramps. I had started my period, and had lots of pain; nothing new, except for the pain and bleeding did not stop. After 3 weeks, I finally saw my family doctor. She ordered an ultrasound, and the cause became clear: a mass of cysts on each ovary. I was sent to a local OB/Gyn for a more thorough exam. She immediately became concerned when I told her I had gone up in one clothing size in 60 days. A pelvic exam, CA 125 and repeat ultrasound were all done, and I was scheduled for an ASAP exploratory laparotomy, and total hysterectomy. A few days later, the CA 125 came back over 800. My OB/Gyn told me that it could have been elevated by something else, so I told myself not to think about it until after surgery.

April 20, 2004. I went in for surgery. The last thing I remember was being moved to the operating table. My OB/Gyn helped the staff move me, smiled, and that was all she wrote. I woke up 3 hours later in recovery. After an hour, I was moved to my room. The nurses settled me in, hooked up all my IVs and tubes, and then let my family in. My husband was first to my bed. He came up to the head of the bed and said, "It's bad, stage 4 ovarian cancer." I immediately lost it. "Here I am, 27 years old, and it is over," I thought. Then my husband wiped my eyes, and said, "We are going to fight. You are not giving up on me." I immediately agreed, and vowed to myself and him right there to fight with all my being.

The next day, the gyn oncologist that had operated with my OB/Gyn came to see us. He laid out the treatment plan, and told me that his nurse would stop by to see me. I was ready to start the fight right then and there, but I needed to let my body heal a little first. I learned that day that I had two volleyball-sized tumors as well as 3 liters of fluid taking up space in my abdomen. No wonder I had been miserable! Two weeks later, I was healing well, and visiting my gyn oncologist's nurse. She went over EVERYTHING in detail, and gave me prescriptions. She also gave me a ton of reading to do, and let me see my surgical report. I got a glimmer of hope when I saw that the diagnosis was actually stage 3c instead of 4. No evidence of lymph node involvement! I was set up to get a Port A Cath, and start chemo on May 11, 2004. I have had two rounds of Taxol/carboplatin since then. Thanks to this and the supplements I have been taking, my CA 125 is already down to 89. I have had minimal side effects from the chemo, and felt good enough to return to work on June 4, 2004. Every day is a victory for me, and I have learned to see the world with more beauty and vibrance. I take things one day at a time, and enjoy the small things. It is the little things that make all the difference.

My mom has been seeing her family doctor for the past 32 years. She has regular check ups and visits for various ailments especially in the past two years. She has been seen frequently for all types of heartburn, acid reflex, stomachaches, bloating, and all sort of gastrointestinal problems like diarrhea, constipation, and gas. Last month she found a lump in her belly. She went to her doctor and he finally ordered a cat scan. I took her to her appointment to get the results of the CAT Scan. The PA told her she had a growth in her abdomen. He wanted a Colonoscopy.. She asked to have the test done in the hospital due to her age (79) and being diabetic, she did not feel like she could handle the prep. So the Dr. Admitted her and called it admission for dehydration, shortness of breath, and dizziness. Being admitted was the best thing that Dr. could’ve done, it was a shame it wasn't his idea. She was diagnosed in a few days with ovarian cancer. She had exploratory surgery and the surgeon said that the cancer was all throughout her abdomen and pelvis, with nodes around her liver and lungs. She had a tumor the size of a softball .. that is what she could feel. The day after surgery she had 3 pints of cancerous fluid drained from her right lung. She had her first chemo treatment before she left the hospital. She will have her second on the 28th of May. Then we find out if the chemo is effective. A person who stayed aware of her symptoms, listened to her body.. but her Dr. Blew her off as another hypochondriac elderly woman. She is so weak and frail. I do not know how she will ever make it through another chemo treatment. My two sisters and I take turns staying with her and caring for her. I will be taking her to chemo Friday. Keep my family in your prayers, as I keep all of you in mine.

Hello Everyone...Here is my story. It's sad, but true. I lost my older sister to OVCA in June of 2001 at age 44. She handled it with much grace and humor. I, myself, was diagnosed 14 months later at age 37 on a routine exam. I am currently back on chemotherapy after a year of remission. I can only hope and pray for the best. Special thanks to Johns Hopkins and the incredible women on the discussion board!!! Love, Ellen S.

PART II

Update. February 2006. After a very long 3 and a half year battle with ovarian cancer, I am currently receiving Hospice care since December 2005. This past year has been extremely difficult to say the least...and I refuse to put my body, my beloved parents and other loved ones through any more trauma. I have endured over 30 treatments of chemotherapy and came to the conclusion, along with my wonderful doctor, that it was time to stop treatment. I also sought out other avenues of healing besides chemotherapy and think these have helped with my longevity. I would greatly advise anyone with a strong history of breast/ovarian to go for genetic testing. I was tested BRAC-2 positive. I received many gifts along this journey...the gift of time, love, living in the moment and just enjoying a great healthy day. Special thanks to my friends on the discussion board and Johns Hopkins. I wish all of you the very best and many healthy days to come. Sincerely, Ellen S.

Life was good in the summer of 2003. I was 40, thin, in good shape running three miles a day, my kids were in the right schools, I had my dream job. Everywhere I went, people said, "You look great!!!!" I was feeling really good, too.

The last week of August I noticed a pain on the right side of my abdomen. At first I attributed it to pulling a muscle in Yoga class. Then, when it didn't go away, I decided I had finally eaten a hole in my stomach with too much Diet Coke. The pain made me exhausted very quickly. I could barely get out of bed for two days. I tried to get an appointment with a gastroenterologist, who couldn't see me for six weeks. While telling my mother about this on the phone, she said, "it sounds like a cyst. Go see your gynecologist." My mother's instincts could very well have saved my life. It wouldn't have occurred to me because I had never had gynecologic problems -- or any physical health problems at all, for that matter.

My gynecologist wanted to see me right away, but was puzzled. I'd had a normal "annual" eight months earlier. When I saw her on Friday before the Labor Day weekend, she ruled out a tubal pregnancy, took some bloodwork to see if I had appendicities, and ordered a transvaginal ultrasound. When I had the ultrasound, I could tell by the expression on the tech's face she was not happy with what she saw, but she wouldn't tell me anything.

My gynecologist got the report from the ultrasound back the Tuesday after Labor Day. She asked me to repeat the ultrasound. (When the ultrasound was repeated, the mass they had found on my right ovary had grown from eight to twelve centimeters, in less than a week's time). Then she said she wanted to take another blood test. I asked her for what. She said a CA-125. I knew what that was because, years ago, I had read Gilda Radner's book about ovarian cancer. I asked her, do I have ovarian cancer? She said she didn't think so, I was too young for that, this was just a precaution.

It took another week for the CA-125 to come back. It was elevated, at 203. (35 or under is a normal reading). My gynecologist told me I would need to have surgery, but she could not do it herself, because, if there is any possibility of malignancy, a gynecologic oncologist should do the surgery.

Through the friend of a friend, I got an appointment with the gynecologic oncologist for the very next day, Wednesday. After seeing me and viewing my records he scheduled the operation for Friday morning (less than 48 hours later). On Friday September 12 my ovaries, uterus, cervix, fifteen lymph nodes, and omentum were removed. The cancer had not spread to any other organs. But my lymph nodes appeared inflamed, which led the gynecologic oncologist to make a tentative Stage 3 diagnosis. However; when the pathology report came back, the lymph nodes turned out to be negative for cancer and he revised the diagnosis to Stage 2c. The cancer was also Grade 1, which is the cell that responds most effectively to standard treatment. I had finally caught a couple of breaks.

My gynecological oncologist handed me off to a medical oncologist for six cycles (one every twenty one days) of taxol and carboplatin, the standard chemo treatment for ovarian cancer patients. I had the first treatment five days after surgery, before I left the hospital. The medical oncologist felt my cancer was actually Stage Ic, which was an even better diagnosis than the IIc.

After the first treatment my CA-125 fell to 19.4, within the normal range. After the third treatment it was only 2.5. It has bounced around between 2 and 6 ever since. After my fourth treatment my doctors gave me an option to do two extra cycles, for a total of eight full dose treatments. I decided to do them. However, for the seventh and eighth chemo we had to replace the taxol with taxotere because the neuropathy (numbness) in my hands and feet were getting too severe. I finished chemo on Feb. 11, 2004 and the week after had a normal CAT Scan and Mammogram. At my three month check-up the end of April my CA-125 was 4.6.

As far as treament went, for me, the mental strain was much harder than anything I went through physically. Even though I was ultimately diagnosed at a much earlier stage and grade than most women with ovarian cancer (80% are Stage III at diagnosis) it was many months before I was convinced death was not imminent. This was the worst part of the whole experience. The physical side effects were nothing compared to the psychological ones, but here they are. Because of the "instant menopause" due to surgery I had lots of hot flashes/loss of libido. I lost all of my (waist length) hair after my second chemo treatment and had a lot of neuropathy and fatigue, and shortness of breath from lower than normal red blood cell counts (anemia). Of course, I was very irritable. Steroids are given in combination with chemotherapy and these blew me up so that I looked like one of those roly poly clowns that roll around on the floor like little babies play with. However, because of the drugs they have nowadays to m

My case was atypical from the beginning until now. Most women with ovarian cancer do not have pelvic pain as a symptom. My doctors still do not know why I did. I was one of the ten percent of women who were diagnosed "early" -- Stage I or II -- (eighty percent are Stage III and ten percent are Stage IV) and also one of the lucky ones with Grade I tumor, which is most responsive to the standard chemo. I did not have any of the known risk factors. So, it is probably not good to rely on my story as any kind of benchmark or guideline. But always, always listen to your body if it does not feel "right". Looking back on it I probably did have some early "symptoms", but I attributed them to being forty and probably being peri-menopausal -- never did I think "ovarian cancer"! I was tired all the time for about two years before my diagnosis (but arent women with young children ALWAYS tired?) Once I ended up in the ER in the summer of 2002, about fifteen months before my diagnosis, because I couldn't stop

After reading and researching everything I can, I believe that the best hope is a test, like the PAP test for cervical cancer, that will detect ovarian cancer at an early stage and become part of every woman's routine annual gynecologic exam. Such a test does not yet exist, although several different types are in development.

My Mom was diagnosed with ovarian cancer on March 23, 2004.

On February 12th she went to see her doctor for a sore toe and he said she sounded out of breath and thought they should take a look at her lungs. In the next few days she had some trouble breathing. It hurt to breathe deeply. She found out she had pleurisy. A few weeks later she was having some stomach pain that seemed to be in the right side of her lower back as well. She was treated for a bladder infection but while on the medication wasn't getting any better and wasn't urinating a lot, even though she was drinking lots. She also was complaining of weight gain saying her stomach was getting big but she had no appetite and was not eating.

On Friday, March 19th, Dad took Mom to the emergency in the evening because the pain in her stomach was really bad. They didn't really do anything for her and ended up sending her home. On Saturday, March 20th they went back to the emergency. This time they didn't let them leave. Turns out that Mom had a couple of blood clots in her legs and they needed to treat them with heparin before she could go. They finally let her go home around midnight that night but told her she had to come back the next day for another shot of heparin. Then they said that Mom needed to have a CT scan of her abdomen because they couldn't find what was causing the blood clots. They left her laying in a bed in the hallway for three days. She is 76 years old.

On Wednesday, March 23rd, the doctor came and talked to Mom while two of my sisters were with her. They told her she had cancer and that it seemed to be in a lot of places. At that time, they finally moved her from the hallway and put her in a room. She was in the gynecology ward as they assumed at that point that it originated in her ovaries.

A few days after her initial diagnosis she ended up having her stomach drained, they took a couple liters of fluid and tested it…then telling us it was ovarian cancer as suspected.

She couldn't have surgery as she is high risk from the condition of her blood due to the clotting. On April 6th she had her first chemo of carbo and taxol. On April 7th she stopped breathing at home and had to go by ambulance back to the hospital. She had lots of fluid built up around her lungs. We almost lost her that day. Her eyes had rolled back in her head, the heart monitor she was hooked up to was flat lining and then would start to race. Her blood pressure dropped to 90 over 48. They managed to stabilize her. She had a very hard go with the chemo. Lots of vomiting and bad sores in her mouth. She stayed on oxygen for almost 2 full weeks. They drained the fluid off her lungs and "forgot" to test it for malignancy. They said they assumed it was known that it was malignant. Excellent work from those doctors…

After reading all the stories on this site, I learned about the CA 125 test. I phoned my Mom's doctor and learned that 2 weeks after her chemo her CA 125 is at 28,670. I have never read anything about anyone's level being so astronomical. Before the chemo, her CA 125 level was at 25,000. Has anyone out there heard of such levels?

Mom is at home now awaiting her next chemo which is scheduled for May 4th. From what I can get out of the doctors, if the CA 125 level does not come down after this one, they will be stopping the chemo treatments.

If anyone has any information they can offer about this type of CA 125 level I would truly appreciate hearing from you. My email is [email protected]

I am 33 and was diagnosed with Clear Cell Cancer of the ovaries on April 2, 2004. It had started with stomach aches and migraines. I had a 23cm tumor removed on 4/2/04. The surgery was approx 4.5 hours long, and the gyn-oncologist did a full hysterectomy with removal of both ovaries. My chemo starts on 4/20/04 and I'm very scared. I've got a great support system and thank God that I'm not dead. I think not knowing the unknown is the scariest of all. People keep telling me I am being strong or that I'm the stongest person they know, but what they don't know is that I just want to sit and cry because of the fear. My husband says "what won't kill you, makes you stronger". Easier said then done. I've told myself that its ok to be scared and afraid until the chemo is over. Just taking one day at a time.

My mom, Norma Directo, was diagnosed with ovarian cancer stage 3 in 1999. When I learned of her diagnosis, I reacted quite badly. It was like the doctors had given her a death sentence. As soon as she had the surgery to remove the tumor, she was determined to get out of the hospital. She forced herself to walk the next day after surgery. She was only in the hospital for a few days before she was discharged. On the day she was discharged, she went back to her store to work. She didn't stop sine. She worked everyday.

She went through her first bout of chemotherapy. She did everything she could do to fight. She called it, "The fight for my life". She drank Noni juice, ate potato leaves, and all other things that she heard would fight the cancer. She went into remission. I decided to move to the mainland, Ohio, to make a better life for myself. She didn't want me to telling me, "What if something happens? You don't know with this kind sickness." Despite this, I moved anyway. My mom was proud that I did. But soon afterwards, her CA-125 crept upward. Therefore, she went through many bouts of chemotherapy for quite sometime.

She had complained about a lump on her shoulder for 2 years. After the 2 years, her doctor decided to finally refer her to a specialist at Queen's Hospital (Hawaii). She had bouts of radiation as well as chemotherapy. As time went by, her health continued to go in a downward slope. In Oct. 2003, her legs started to swell. Little did I know because she did not tell me until Feb 2004. She worked on Feb 20, 2004. On Feb 22, she went for radiation. She was then taken to the ER because she was unable to walk. The swelling had worsened. I took the next flight back home to Hawaii and arrived on Feb 23, 2004.

She was at Kaiser Moanalua. I stayed by her side day and night. Everyday that I was there the prognosis became worse. From the first day, the doctor informed me that she had less than 6 months. The second day, the doctor told me that it was less than 3 months. From then on, the prognosis tur When I was five years old, I remeber crying hysterically for no particular reason. My mom asked me, "What's the matter?" At the tender age of 5, I imagined losing my mom. Therefore, I asked her, "Promise me you'll never die." She wrapped her arms around me and that offered me comfort. A few days before she died, she promised me that she'd always be with me. Through those words, I find that same comfort.

I want to write my personal story with ovarian cancer in honor of my Aunt Katy. I don't know what year the disease took her away from us, but it was aproximately 15 years ago. She was born normal, but suffered brain damage when she was very young and was mentally retarded from the brain damage. Even though she had the intelligence of a 9 year old, she was gifted in music. She could play any key instrument such as piano or her favorite which was the accordian just by listening to the music one or two times. She had no training ever and could play it perfectly. But her first love was the Lord and going to church. She walked to two different churches every Sunday. When you said Hi to her, she always responded with, "What's so high? Heaven's so high," holding her hands up in the air to praise the Lord. She was not an aunt in my eyes. She was my playmate and best friend since she had the mentality of a 9 year old and liked to play like a child. As I became older, I still would play with her like a chilsince she loved to do that with me.

When she was 46 years old, a very tragic thing happened to her. On her way walking to church one Sunday morning, a man attacked her and she was badly beaten. She either had a seizure during the attack since she also was an epileptic or she was unconscious, but she didn't have much memory as to what happened. He may have also raped her since we found her underpants in her dress pocket. The beating was so bad that we could hardly recognize her. One eye was permanently damaged. Her attacker was never found because her memory was so poor. A few months after the attack, we noticed that her stomach seemed swollen. We thought it would be unlikely due to her age, but we wondered if she could be pregnant if her attacker did rape her. We took her to the doctor and found out it was actually worse than that. She was diagnosed with advanced inoperable ovarian cancer.

Over the course of about a year, I watched Aunt Katy slowly deteriorate due to this horrid disease. Even with all this suffering from the beating and the cancer, she never complained and continued to praise her Lord just as she has always done since she was a child. Nothing rattled her. If anything, all the suffering seemed to make her faith stronger. The night that ovarian cancer finally took her, she told us earlier in the day that her Lord was waiting for her and her mother was waiting for her there with him.

For many years I was very angry and bitter over what happened to Aunt Katy in her life. I could not understand why she was so faithful to her wonderful Jesus and she was allowed to be victimized and suffer such a death. I was so angry at times that it was almost unbearable. Over time I came to believe we are all here for a reason and we all have lessons to learn and to be taught. I believe Aunt Katie was here to show us how to love and how to forgive because she was a true example of what a good soul should be. Even with all that she suffered in life, she never had a bit of hatred or bitterness. Look at all that happened to her. She was born normal but suffered brain damage as a small child which made her intelligence that of a nine year old. The brain damage also left her epileptic and she suffered many seizures even with medication. She never had the joy of getting married or having a child. She spent her whole life praising and loving church and the Lord. At 46 years old she was horribly attacked and a few months later had terminal cancer which took her life within a year. It alls seems so tragic and would break even the hardest of hearts, yet she was the happiest person I have even known. She never let anything steal her joy for life, not tradgedy, not pain, and not disease.

I try to remember the many years of good times I had with Aunt Katy instead of the bad. I remember playing games, going on our homemade see-saw of a board laid across a saw horse made of wood, of swinging on a tire swing under a tree, going blackberry picking, playing hide and seek or catch, eating ice cream we got on hot summer days from the ice cream man, and best of all hearing her create a new song we heard on her radio. I write this for my Aunt Katy who taught me the most important lesson in life about love and faith. I know we will meet again in time, but I still miss her very much. I pray for all those that have ovarian cancer. The advances in medicine are much better today, and hopefully research will eventually wipe this disease out for all women.

My mother has reoccurance of Ovarian cancer. She has already been operated once & has had 6 chaemo's of Texol. Now after 3months the tumor has developed again. We have already given her another chaemo of Caelyx but seems to be ineffective. We will now try for some alternative treatments like herbs etc.

I am 37 and I was diagnosed with ovarian cancer on the 2nd of june 2003. I was very lucky. They found it by accident. I was having stomach pains and the doc did a scan and he found a lump. I had a blood test which showed that my ca125 was high,after various tests I was told it was cancer. I have had two ops and a course of carboplatin chemo, it seems to have worked. I am now in my 3rd month of remission.What kept me fighting was my three sons and my husbund. Every time I wanted to give up I thought of them.

I have read some of the stories others have posted on this website and have found it both informative and comforting so I felt the need to share with all of you what my family has been going through with this disease. My mother, Joan, who will be 67 this year was diagnosed with Primary Peritoneal Carcinoma in Feb 2002. Her and my dad had gone on a cruise to Puerto Rico and upon her return she noticed some abdominal discomfort, constipation, and heart burn. I advised her to contact her physician which lead to an abdominal x-ray then to an ultrasound and finally a CT Scan. She was subsequently tapped (paracentesis) in which they drained 4 liters of fluid out of her peritoneal cavity. Her CA-125 was >5000. Within two weeks she had the debulking surgery in which they did a hysterectomy, omentectomy, and appendectomy. She has had Taxol, carboplatin, Doxil, Gemzar, Taxotere, Cisplatin, and now back to Taxol with varying poor results as well as varying severity of side effects. The good news is that her CA

I am 24 years old- happily married with one son. My story began about Jan. 2004. It started with a stomach pain on my left side and my stomach started getting bigger and I didn't pay any attention. I never thought anything like this would happen to me- a 24 year old healthy woman would have ovarian cancer. So, on Feb 9, 2004 I had to have all my woman parts removed because it had spread. I don't really understand a lot of things yet but I do know that I'm strong and I have God in my life and no matter what I will get through this. If anyone out there has any advice feel free to email me at [email protected]

My name is Jwan, I was diagnosed with Stromal Ovarian Cancer 5/20/03. I am 33 years old. GOD has blessed me with three wonderful children, before this took place. I had a total hysterectomy. The cancer was in my right ovary, on my peritoneal cavity, on my bladder, and on my diaphragm. He was able to remove 80% of the cancer. I started chemo treatments (cisplatin, estoposide, and ?) 2 wks after surgery. I was in and out of the hospital all summer for various reasons: neutropenic , blood clots in both lungs-green belt filter placed, occurences of dehydration.

My tumor is rare, not able to use the CA-125 marker. I had CT scan done in Sept (the day Hurricane Isabelle hit Richmond, VA), nothing showed up. I had second look surgery Oct. 24th, 2003 microscopic tumor in a very small area found in my cavity. My doc has placed me back on chemo(carboplatnium and taxotere)----- not reoccurence. I was on taxol but it made my neuropathy go CRAZY. My check ups go very well, he is pleased with my progress, but of course cannot make any gurantees. My doc is very aggressive and strict with his course of treatments, but he is very compassionate and a good listener. You want that in an oncologist (all physicans should be that way). I am a survivor and will remain a survivor. Faith and attitude is everything!

But my faith in God and Jesus Christ give me the courage and strength to do what I have to do to survive not only for my family, but for myself. Just talk to our Father through our Brother Jesus Christ they will lead you correctly. Just remember he will answer you, but in his time. One thing about this disease you have to have patience (therapy time, blood work, making sure blood counts are okay check up, CT Scans, etc……).

I have also learned cancer is not a death sentence, which I did not know before I was diagnosed. I have talked to so many people that have had cancer (various types), and they are doing so well. In today's time cancer is a threat to our lives, but technology is moving forward to erradicate the "instant death sentence" we all fear when associating the words cancer:death. Just keep your faith, keep building your relationship with God, listen to your body, listen to your physcian (if you don't have a good feeling about your doc, it is your right to seek other medical opinions), and keep up to date about the new chemos.

If any one needs to talk, yell, cry, shout, throw something, vent, or just need to know there is someone on the other end of an e-mail or call I am available. You can e-mail me at [email protected] or [email protected]. We are all in this together. I pray for all of us. God is good and he listens and hears our prayers. May God bless you and your loved ones in the name of Jesus Christ I pray. Do not hesitate to drop me a line.

Dearest friends, I write not for myself, but for my aunt Gloria as support! She was diagnosed with ovarian cancer on 7-7-01 or 02. She is one of the nicest ladies you will ever meet with or without cancer! I was there for the first surgery. I could do nothing but pray! I am her neice,and plan to be here through it all! I have already brought up my offer of going to chemo with her. There is NO pressure though! I am privledged to call such a fighter my aunt! I HOPE all of you are living out your dreams, and not letting this bump in the road get in the way of your lives! I do hope that you all have family support in this time of life defying need! I pray for my aunt,and all that need help in this journey! Just remember YOU NEVER, EVER GIVE UP YOUR HOPE! For if you give up your HOPE than your giving up on kicking this cancer's A--! I don't know your exact situation, but I do know that you are all fighiting this same harsh battle. To me GOD will take who he pleases when he pleases, but you can always give it your ALL! That may be the ONE little thing that makes a very BIG difference! I know my aunt Gloria, was crushed to find out that she had cancer! Even if she wasn't, I was crushed enough for her AND me both! She tried doxil, and had a very bad allergic reaction! She has also had toxil.She has had to be put on the neuroplatin shots for bone marrow! She 3-8-04 for a round of chemo. I pray that the cancer will go in remisson! But what I really pray is for it to just go away! I LOVE to stay with her, because she is so cool! She is a lady in her early 50's, but is cooler than a lot of people that I know! Sometimes I wish that I could just move in,and stay with her like a live in nanny! I know that she would have to get sick of me though! I never thought that it would be possible to learn so much from such a bad scenario. I guess I proved myself wrong though. You know Gloria can not eat shellfish anymore! I wander if all ovarian cancer patients have to stay away from eating shellfish? You know were talking,and think that a prenatal vitamin that her mother took during her pregnancy could have caused it! It was something that the government got the FDA's approval for, and just put it on the shelf! We think that it may have caused (2) two of her mom's miscarriages! It was introduced from (1942-1956). If you know of anyone who has had a misscarage in that time frame that may be the cause! As they say in court. For one be strong,for two NEVER,EVER,EVER,GIVE UP! Also ovarian cancer SUCKS!!!!! But, if you have someone to confide in than it is not as bad as it would be going at it alone and afraid! As always ALL of my HOPES,PRAYERS,and LOVE throughout this journey! ALL OF MY LOVE, Britney Schaalma!!!!!!!!!!!!!!!!!!!!!!

At the age of 51 my maternal grandmother lost her battle with Ovarian Cancer. I was 4 years old, so my memories of her are vague. What I can remember about her was her great determination to overcome this and that she was extremely brave when reality came into play. She went to the her gynocologist with complaints of pain in her abdomen. After examining her, he found nothing. She didn't think much of it and left with relief. The pain continued to grow and she then realized that something was wrong. After about a year she decided that she needed to see about this and took action. She saw another doctor and the results from that visit were not so good. She was in one of the final stages of ovarian cancer. The doctors knew that her chances of being rid of it through chemo or other drugs were slim to none. She did do the chemo for a while because I remember all of her hair falling and she grew thinnner day by day. My mom and her two sisters watched as my grandmother took her everyday struggle to breath. Looking back on the time spent with my grandmother I now realize how brave she was and it makes me sad to think of all the pain and struggling she went through. I also know that my chances are very high, as my mom's as well. I go for regular check ups and I know that my grandmother is watching over me. That I am in confident in.

Talk about wild roller-coaster rides...this story, like the others on this site, is not for the faint-hearted! Beware and read your body!

Being the divorced, independent, mother, grandmother, career woman that I was, I did not have time to be sick. I ate right, exercised, did my yoga, never smoked and only sipped wine in social settings; what serious illness could possibly be growing inside me?

Hungry for that next promotion, in May 2003, my job tranferred me to the sunny coast of SC. Long hours at work, with all that unpacking/moving stuff at night, I thought I had simply pulled a muscle. You know, just overdid it. And looking back a few months, the fatigue was bad and the bloating and stomach pain was growing, but nothing a long night on the heating pad didn't help (and a couple extra pain pills).

Finally, I did the phone book thing. Looked up a gyn and made an appointment (I chose a female doctor). On May 30 the doctor just as well kill me on that examining table -- it hurt too bad to do internal exam. The doctor made the first available appointment for me to have an ultrasound, but dumb me cancelled it. It was Father's Day weekend and I had to drive home to see Dad!

I rescheduled on June 21st and the tech said I should call the doctor first thing that Monday. I didn't have to - she called me with a CT Scan appointment. I had never had a CT Scan and low and behold - I was allergic to contract dye! 911 and off to the ER! Just before passing out, I remember looking up at the radiologist and begging, please tell me you got enough shots of my stomach to tell me what is wrong!

Later that afternoon while I was still being monitored in the ER, the radiologist came to the nurses station, asked if I was still there. He told the nurse to tell me it was very important I call my doctor in the morning. Again, I didn't have to. She called early and sent me to get a CA-125 test done at the local hospital. And the nurse at the hospital said due to the 4th of July it might take a week to get the results. WRONG! The doctor called me early on July 7th to say -- there is cancer and lots of it! My CA-125 was 2,983! She needed my permission to get me to the Medical University of South Carolina in Charleston immediately!

The female doctor that had never seen me before in my life probably saved my life! On July 30 I had surgery performed by the top two doctors in SC in Gyn/On. The day of surgery my CA-125 had climbed to almost 5,000. This monster was growing fast! It was Stage IIIC. In August two solid masses were found in my right breast. After that surgery, which was benign, they continue to monitor me closely for mestastasis to the breast. I started a clinical trial at MUSC in August 2003. I completed four rounds of Gemzar and Carboplatin. It was determined the toxicity building, PN, hearing loss, blurred vision, was due to the Carboplatin.

In an effort to give me the quality of life I had enjoyed, it was decided to change my chemo to Doxil. No one knew I was allergic to it also! After only minutes into the drip - my body shut down. Of course, I won't be getting Doxil again. And with my CA-125 doubling since January 5, 2004, it was decided I start Taxotere immediately. I did February 12th! My doctor at MUSC said the PN and all is mute at this point. He may introduce a Carboplatin again if the Taxotere alone isn't enough.

Although I haven't seem to do any of the normal things normally -- I do plan to redefine myself and come to terms with the battle at hand. Taking one day at a time. May God bless you all in your battle with this dreadful disease, as He has so many before us!

I was diagnosed with Stage 3, grade 1 ovarian cancer at the age of 32. It was discovered during a surgery to figure out why I was not getting pregnant. I had an immediate total hysterectomy, followed by 8 rounds of chemo, 2 days each, taking cysplatin and cytoxin?

I then had a second look surgery. Everything was gone!! I stayed cancer-free from 1989 to 2001. In 2001, I had a recurrence. Luckily, the ovarian cancer was isolated in a few places in my pelvis, and had not metastized. I went through chemo again, this time taking Taxol and carboplatin. What a difference 13 years makes!! The anti-nausea drugs are so much better now! I have now been cancer-free since the end of 2001 to present, 2/2004. Hopefully, I will stay that way. I have been living with ovarian cancer for almost 16 years. I am now 47--was able to adopt two beautiful children--have a husband that has stuck by me through thick and thin--and truly feel blessed to be here. Ovarian cancer is beatable!!

Eleven years ago, my mother, 65, was having abdominal bloating, fullness and discomfort. As a petite woman, her clothes no longer seem to fit around her waist. She kept saying “look at my stomach! I don’t have a stomach like this.” For six months she was in and out of Dr.’s offices, a one week hospital stay - under the guidance of an oncologist, she went through a slew of Dr.’s of a large facility of Family Practitioners seeking to find help for her growing abdomen and discomfort. She heard suggestions like try sit-ups, you know you are not a spring chicken, what do you expect your waist to be like at your age?

Her discomfort grew more and more intense and she complained of “electric shock” type jabbing pains. The day she called and said she was unable to make it from the kitchen table to the kitchen sink due to breathing difficulty I said enough is enough. We went to another hospital and visited their ER. They drained fluid from her abdomen and she received more testing. She was diagnosed within two hours with ovarian cancer. She underwent major surgery. After diligently seeking diagnosis from many...no one, not one caught this. Amazing.

She was diagnosed with and survived breast cancer 17 years earlier, my aunt and my grandmother all had breast cancer as well. You can’t believe the shock of all of this. I never even heard of ovarian cancer before her. Now I am aware.

One day several months later I visited the oncologist office of the Dr. who tried to provide a diagnosis for my mom. He came into the waiting room and said “I am so sorry about your mother--I immediately went to my files and checked if I did a CA125. I did and they were not elevated.” During February she was in his care. She died in July, three (3) weeks after diagnosis.

Today I am constantly reminded of her diligent search for answers to her ever growing symptoms. I am 48 years old and facing surgery in 2 weeks for all the symptoms I walked with my mother nearly 12 years ago...bloating, indigestion, bowel habit change and heartburn. I respect her choice of no chemotherapy. I can’t say that is what I would do or not do. I can only say I respect and admire her bravery. My mother taught 4 daughters how to live....and also taught us how to die. We will be together again someday--I know it.

My journey started with the diagnosis of breast cancer in 1997. Iit was caught early so I only had to endure radiation with the breast cancer. Then in 1998 I started having heavy periods. A D&C relieved the problem for about a year and then it would start up again. Then after dealing with this and just not feeling right, I thought I needed a hysterrectomy or that I possibily had colon trouble. I had the blotting and the tiredness and trouble sleeping which I just thought was stress related. As I read stories- all signs of ovarian cancer. Well, I decided in August of 2002 that I had had enough of the bleeding and told my doctor that I wanted to schedule a hysterectomy and she agreed since I had had three D& C's. It was scheduled for the end of October 2002. Surgery went fine. Doctor saw no signs of any problems and I even have a picture of everything that she took out of me, I had a vaginal hysterectomey. Right before Thanksgiving of 2002 I was given the news that I had cancer, they didn't tell me what kind.

My mom whom is 73 years old was recently diagnosed with overian cancer. she has undergone 2 chemo treatments and has 4 more to go. She has done real well so far with her treatments. I have tried to keep her spirits up. I was diagnosed 8 years ago with breast cancer and currently am cancer free. I told my mom I would be there for her through it all as she was with me. I also have an aunt whom has had cancer twice and is still here and cancer free. She will be 78 years old this May.

My mother’s story is similar to many others’. She was under the care of a doctor for six months prior to her diagnosis for symptoms that we now recognize as classic symptoms of ovarian cancer. In December of 2002, my mother who was then 61 developed a red rash across most of her body. Her doctors still to this day deny any linkage between her rash and ovarian cancer. All we know is that her rash began when her other symptoms began, it disappeared when the disease was in remission, and it re-appeared when her cancer had returned. Our bodies have a way of telling us when something is wrong. My mother’s body was shouting out for help, but no one seemed to be listening.

Besides her rash, my mother was bloated, had terrible indigestion, and had a nagging pain on her right side. This, along with the rash, persisted for many months. Her doctor prescribed diet pills, exercise, and creams. He never mentioned the possibility of ovarian cancer and never sent her for a catscan to discover the source of the pain on her right side. He never gave her a gynecological exam or recommended that she see a gynecologist. This was true despite the fact that my mother had a history of ovarian cysts as a young woman and had even had an ovarian tumor (non-malignant) the size of a baseball and an ovary removed when she was 38 years old. At that time, the doctors had reasoned against removing both of her ovaries on the grounds that it would cause early onset of menopause. I suppose they viewed menopause as a disease.

In truth, my mother should have been more pro-active in terms of her care. She should have demanded to see a gynecologist. But she was from a generation of women that was raised to think of doctors as all-knowing and that gynecologists are only necessary for women who are trying to have children.

By June of 2003, my mother’s stomach had bloated to the point where she looked as though she was nine months pregnant. When I saw her, my heart nearly stopped. Something was terribly wrong, but I had no idea what. My mother at that time was also having a very difficult time breathing. Getting up to go to the bathroom exhausted her. My sisters and I convinced her doctor to finally send her to a specialist. He sent her to a gastroenterologist who examined my mother and said, “I feel no masses”. But, after much urging, he agreed begrudgingly that she should have a catscan. She did and it revealed a mass the size of a grapefruit on her ovary and fluid in her lungs. Finally, six months from the onset of her symptoms, we had a diagnosis – stage IV ovarian cancer.

From that point on, my mother was in the care of the best gynecological oncologists in Northern NJ. But as it turns out, it was too late. There was no hope of a cure, only the hope of remission and decent quality of life. My mother grasped that hope and held on tightly through nine months of chemotherapy and surgery. As it turns out, she was able to tolerate chemotherapy very well. Her swelling rapidly subsided and the pain and her mysterious rash disappeared. By March of 2003 she was officially in remission. I was with her the day that the doctor told her that she didn’t need to come back for another 2 months. She was ecstatic and so would I have been had it not been for that nagging sense of dread in the pit of my stomach. At best, I was only cautiously optimistic. I had read the statistics on surviving ovarian cancer. I wasn’t convinced that we had beat it.

Less than two months later, my mother’s CA level had increased. She suspected as much because that mysterious red rash had returned. She took the news in stride. Chemo wasn’t so awful the last time, she reasoned. I can do this again, she said. By September of 2003, it was apparent that her new chemo was not working. The cancer was gaining on her and we began the race against the clock to find her a treatment that would. But her body was growing tired. By October of 2003, she was too tired to get out of bed much and too sick to keep any food down. By November, her lungs and abdomen had to be drained of the fluid that had accumulated. Her quality of life was extremely poor and she kept praying for the end. Her doctor, however, wanted to keep treating her and held out hope that he could arrest the cancer’s growth and restore decent quality of life. She tried to tell me that she knew she was dying. I remained hopeful.

I remember sitting with my mother one day as she was apologizing for how dreadful she thought she must look. I looked at her, and for the first time in my life I realized just how beautiful she was. At that point, she had no hair, she was dreadfully thin, and she could not even help herself to the bathroom. But when someone is stripped of all outward vestiges of their dignity, something more lovely – almost other worldly – shines through. It is the essence of the person - their spirit and their love. It was breathtakingly beautiful to behold. I will cherish the moment I looked into my mother’s eyes and saw what a truly beautiful person she was.

On January 1, 2004 – eighteen months after her diagnosis and 24 months since the onset of her symptoms – my mother age 63 died. She was at home. Her heart simply gave out. She died peacefully, in the loving arms of my father. I do not think that she was aware that she was going to die that day. I think that she would have called her daughters home if she knew. I guess I always thought we would somehow know when she was going to die and that we would be there with her when she passed on. I had just seen her over the Christmas holiday less than a week before. Not only did cancer steal her life in the end, but it robbed her of the chance to say goodbye. Perhaps that was for the best. She never wanted to say good-bye to us.

As I read the stories on the website, I am struck by the amount of women whose symptoms were similarly ignored or mis-diagnosed. Those of us who have been left behind need to get furious – furious at the medical community that routinely disregards the complaints of post-menopausal women, furious at the insurance companies who refuse to pay for preventative care and screening, furious at the policy makers who allocate billions of dollars to the development and deployment of weapons that destroy lives while the war that tens of thousands of women are fighting against ovarian and breast cancer remains seriously under-funded. This is a war that we must win because beautiful women like my mother are too precious too lose. Send an email to everyone you know alerting them to the symptoms of ovarian cancer and ask them to send the message on to everyone they know. You never know who your message might reach. Had I received an email describing the symptoms of ovarian cancer back in December of 2002, I would have forced my mother- insurance company approval or not - to see an ovarian cancer specialist. If only we had known, she might be alive today.

I wish all of you who are still fighting this battle my love and warmest wishes.

I have had ghastly, painful, heavy periods since age 12. Coming from a "keep a stiff upper lip" background, however, I refrained from medical intervention until age 44, whereupon I had a D&C hysteroscopy for a large fibroid. The diagnosis from the D&C was simple endometrial hyperplasia, although the doctor said it "looked really awful and there was a huge amount" of stuff removed. Unfortunately, as I'd been warned could be the case in some instances, my periods became much worse after the procedure.

Around January of 2003, I saw a fibroid study advertised, and applied to be a research subject. Part of the evaluation for admission to the study involved endometrial biopsy, ultrasound, and pelvic MRI. Findings on the ultrasound of free fluid, and a possible complex cyst or mass on the left ovary, excluded me from the study and I was advised to have surgery immediately. I had a CA-125 test (taken during menses) which was elevated at 135. I was told that even if this surgery began as a laparoscopy, very likely it would turn into a hysterectomy and probably even a debulking operation for ovarian cancer. A gyn-oncologist would be present.

I had felt for a number of years that many of my symptoms must be due to severe endometriosis. During approximately the third, four and fifth days of each period, it felt like something was clawing or had punched the area of my abdomen at the transverse colon and splenic flexure (upper left) areas. It was not the normal "crampy" pain; far worse. Most of the rest of the time, I felt completely fine, although I had had chronic constipation and gas. However, I was taking iron and a tricyclic antidepressant, both of which cause constipation. And though excessive flatus can be a symptom of ovarian cancer, my whole family tended to be gassy, and most of the women were infertile and had terrible periods. Adoption was common in my sparse family. I don't recall hearing of any real history of cancer, and all my grandparents lived into their 80s. My mother and father are both alive, in their mid 70s. My mother was very ill with each period until menopause, whereupon she became symptom-free. Because of this history, I still think it is possible I have endometriosis instead of, or perhaps in addition to, ovarian cancer.

I began obviously accumulating fluid in the abdomen and pelvis during the summer of 2003. In October, I was hospitalized to drain 5 liters of bloody abdominal ascites. I have been told that almost certainly I have metastatic ovarian cancer, and I have refused treatment other than palliative. I requested and was denied a biopsy. Since the fluid removal, I've been feeling quite well, with no change in my energy level or appetite. I work 60 hours per week. My symptoms remain confined to my menstrual period. It has been four months since the drainage/tap, and I do not [yet] evidence of reaccumulation of fluid.

I'm taking each day as it comes. It has been a challenge to stick to my guns and avoid surgery and chemo, but it has been worth it. I'm walking, talking, working, functioning. It is also a challenge to live in limbo, being told I have ovarian cancer, with "metastatic ovarian cancer" on all of my reports, yet no biopsy to prove the diagnosis. But I've learned that life goes on pretty much the same, regardless. I'm preparing myself for whatever the outcome may be.

December 28, 2003: This year, 2003, was the year of my 60th birthday. In May I saw my family doctor for an annual physical. I told him about a sharp, stabbing pain I'd had a few times in my lower right abdomen. I had no other recognizable symptoms that I can recall. After all the stories I've read here, I'll have to say I think I have a very good doctor! He gave me a full pelvic exam and couldn't find anything wrong. But he went ahead and ordered an ultrasound, and followed that with a blood test for CA125. (I had no idea what he was looking for at that point.)

He called and told me "something" showed up on the ultrasound and suggested I see a gynecologist. I guess I'm good at self-deception because I didn't ask him what he thought it was and told myself I probably had an ovarian cyst. I got an appointment with a recommended gynecologist quite soon and he turned out to be the bearer of the happy tidings that I probably had ovarian cancer.

I remember feeling dizzy and sick when I heard that word - it has tremendous power. I wondered if I'd be able to drive my car home; I did. I laid down on the couch and thought about how to tell my husband - I felt like all the air had been drained out of me.

Well, within two weeks of that dark day I had major abdominal surgery - all my female parts were removed, along with a grapefruit-sized tumor on one ovary. The cancer was staged at IIIC- it had spread to the other ovary and there were three distinct spots of it on my abdominal wall, but nothing on any other organs. Almost three weeks to the day after the surgery I began chemo - I had six treatments of taxol and carboplatin, once every three weeks. I lost all my hair and most of my energy but feel very fortunate in that I never had nausea or vomiting and, except for a few days after each treatment, never really lost my appetite. (Although that wouldn't have hurt me!)

Family and friends have been more helpful and kind than I would ever have imagined. I enjoyed Christmas with my husband, our children and grandchildren and feel grateful to be here. A cancer diagnosis is life-changing and mind-changing, for sure. I try, with varying degrees of success, to just enjoy each day for what it is and not worry too much about the future. Best wishes and God's blessings to everyone who's dealing with this disease.

"A YEAR OF HELL"

By Shelby, Judy's daughter

We knew there was something wrong in July of 2002, when my mother who was way beyond menopause, had her period and her abdomen was swollen to look like she was three months pregnant. She went to the doctor and all of our worst fears came true; it was cancer and it was in her ovaries. The news came as a shocking blow, like we had just been run over by a speeding truck. This only happens to other people, but no, it was happening to us and this is where my mother's "year of hell" began.

About two weeks after getting the news, she had an appointment to get rid of everything that made her a woman. What we didn't know was that the tumour had already grown large enough to attach itself to her bowel. The cancer had already spread to other parts of her body. The operation went as planned, or so we thought. After the operation, we went to see her and she was in very good spirits. She didn't even complain of pain but that was my mother; anyway you never could tell if she hurt or not.

A little while later she was able to go home. I will never forget the tone in her voice when she went home, she was like a little girl in a candy store, so excited to be there. Then the chemo started. It was six months of once a month treatments. The chemo treatments were two and a half hours south of where they lived. So, once a month my father would drive her down there. My father. Now there is a man of every woman's dream. He is the type of man who would bend over backwards for you and not ask questions. My mother was so lucky to have him.

My mother was receiving the strongest chemo you could get because she had the fast action cancer. I remember during those six months she was tired and sick from the chemo. Some days she would just feel tired and other days she could barely get up in the morning but the doctors said if she didn't have the chemo she would not be with us today.

After the six months of chemo, she had a two-month break and then the radiation began that was across the country. It took a five-hour plane ride to get there. I was writing her e-mail letters all the time. She seemed very happy in her e-mails. My mother had two months of radiation and when she came home, she was a brand new woman. She had a new outlook on life. She and I bonded the way I have always wanted to bond with her. It was the best time of my life. Then three months later she started getting sick again. We were told it was a side-effect of the radiation. I remember being on the phone with her telling her to get to a doctor but she would just come back with, "I just got back from there a week ago." My mother was very stubborn.

Then there was a phone call I will never forget. I was talking to her and she didn't sound like her; her words were very slow and she was slurring. When I got off the phone, I said to my sister, "Mom does not sound right." That night she went back into the hospital; after many tests we found out why she sounded the way she did. Her calcium had shot up through the roof. The doctors said they had never seen anyone alive with that high calcium before.

The day she went into the hospital, I was going out of town for three weeks to see a friend, so I gave my sister the phone number and told her to keep me posted. After about two weeks of me being at my friends, my mother was moved to the same town I was in, to get more tests. I called her almost every day to tell her how I was doing and to see how she was. Then one cloudy day my sister called me and told me that my mom had three days to live. I broke down in tears on the phone. My friend was sitting beside me. She held my hand not knowing what was said to me. After a while, my sister and father came to get my son and I. Then off we went to the hospital to go see my mother.

When we got there, I didn't know what to expect. We walked into her room and the woman lying in the bed was not my mother. It was some other woman who was very pale and thin. I didn't want to believe that the woman who was lying there was my mother. I sat beside her. My sister sat beside me and my father sat on the bed. She looked at us and said, "I have no I idea on what's going on. They said if this chemo doesn't take then there is nothing more that they can do." Thankfully that chemo worked. But the chemo was killing her blood so she didn't want it after that.

Two weeks later, she was transferred back to the hospital close to her home. After a few days stay, she was allowed to go home. It was nice seeing her outside of a hospital and it was especially nice seeing her in her own element. She was home for at about a week. Then one day, the following week, my mother got up to go to the bathroom, fell down and she could not get back up. My father came in to help her up and put her back in bed. Then my mother said to him that she could not move and that she thought it would be best to go to the hospital.

I called my father that day and I knew something was wrong the minute he answered the phone. He had a panic tone to his voice and I knew it was mom. I asked him what was going on. He said that mom couldn't get out of bed and that he was going to call 911 to get her to the hospital and that's what he did.

My sister, who was out with her husband, had left their cell phone on the charger. I didn't know the phone was at home. I was calling her for two hours. By the time they did get home I was in a panic wondering where they were. My friend had come over that night to watch movies, but instead ended up looking after my son. She didn't mind, given the situation, so we went to the hospital and found our mother in the emergency room.

When we arrived we all sat around her bed. I was sitting on the left side of my mother. My sister and her husband were sitting on her right side; my father was sitting at her feet. We waited for the doctor.

The time goes by so slowly. I watch nurse after nurse walk by wondering if one of them will come to my mother's bedside. All I can do is sit there while the smell of the hospital makes me feel ill. It feels like years of waiting for someone, anyone to come see my mother. I have never had a stronger feeling of helplessness in my life. I watch a woman with black hair who was wearing black pants and a white and black striped shirt walk by. I don't know why I chose to "study" her as she walked by. I guess it was to pass the time while waiting for a doctor. Then I see him. The doctor; as he walks right on by to another bed. Why does he not realize that my mother is the one who needs him? I am finding it very hard to sit still. I want to stand and to sit. I am not sure what to do with myself so I sit next to her holding her hand, hoping that someone will be there soon. As I look into her eyes, I do not see my mother, the woman who raised my sister and I. I am not sure what I see. When I look up, I see more nurses walk by with their shoes squeaky on the emergency room floor. Then I look at my father and I take notice of the look of despair in his eyes. The woman lying on the bed, my mother, his wife, was so thin. Then I look into her eyes and I feel a sense of calmness, even when my sister and I are crying ... my mother is so calm and in her eyes I see the look of "hope" comforting me letting me know that everything will be fine . then he walked in ... the doctor.

I have never felt such an overwhelming feeling of "relief." He says to her that he will do blood work and keep her in over night. As my sister, her husband, and I depart, we all give her a kiss and tell her that we will see her tomorrow.

The next day we are driving to the "Doctor's house" (that's what I told my son the hospital was), to see my mother and I feel the tears coming. I try to choke them back but I am unsuccessful. Walking into the hospital through the long hallway to the elevator, it seemed the hallway got longer and longer with every step I took. Finally, we reach the elevator and we stand there and wait. When the door finally opens, we walk inside, not a word spoken since we left the car. We get out of the elevator, go to the nurse's station, and ask if it was okay to go see her. "She is in room 203" one said.

As we leave the station to walk to her room, I feel the tears coming on again. She had a private room. I walked up to her bed and there she was. My mother started crying. She looked at me and said "You be a good girl." I could no longer hold back my tears. I looked at her through my watery eyes and I said, "Don't you say your goodbyes, don't do that". I took her hand and rubbed her index finger. My sister was behind my father who was sitting in a chair beside my mother. We tried to talk about happy times but I knew that we were all thinking about the outcome of this terrible situation. Just like in the emergency room, I have never felt so helpless. I could not do anything. I could just sit there and watch my mother drift away from me.

After a week, she started getting day passes and my father took her for nice drives and then home where she loved to be. Because at her home, there was a creek with a wooden bridge that my father had made out of a fallen tree. It was so beautiful and peaceful. My mother loved to sit beside the creek on the bench and just listen to the water running over the rocks; that was her "happy place". A place where she could forget what was going on in her life and just relax.

It wasn't long before she had to go back to the hospital because her health was slipping away from her. She would be in the hospital on her IV for a couple of days and then would be given another pass. On Friday, August 15, she got a three-day pass to go home. That night, my sister slept with her in the bed and my father slept on the couch. Every hour during the night, my sister was up taking her to the bathroom. In the morning, she started hallucinating and my sister said that my mother could no longer stay home, so they called the ambulance and took her back to the hospital.

That Saturday night my sister took me to see her. My mother had slipped into a partial coma. I walked into the room. I saw my mother lying on the bed motionless with her eyes open. I had a book in my hand ... it hit the floor; then I saw my mother's chest move, so I slowly bent down to get my book. I walked over to her bed, sat beside her, and started crying. I held her hand and said a "special" prayer for her.

After about thirty minutes or so, my mother's best friend came in and she gave me a big hug. We just held each other for a while. I told her that my mother had spent the previous night at home and that my sister had been up a lot with my mom during the night. My mother's best friend then told me, that that night she had had a very restless sleep and that she kept waking up about every 45 minutes. So, I told her that it was probably my mother telling her to come see her and that is what she did.

We both sat there for a while and then she said we should go for a walk to move our legs so we went down to the cafeteria. I had a muffin and a soda and she had chips. We just sat there talking about my mother and we both knew that any day it was going to happen.

We both decided that it was time to go back to her room so we went upstairs to see her again. We sat beside my mother talking about the past and the happy times we both shared with her. I didn't know if my mother knew that I was there or not, so her best friend asked her to let me know. My mother opened her blue eyes wide and looked directly at me. I was very relieved, because I then knew for sure, that she knew that I was there. I took her hand in mine and asked her to squeeze it and she did. Then her best friend said that she was going to leave to give me some time alone with my mother. She waited for me at the nurse's station. When she left, I took my mother's hand again, kissed it, and told her that I loved her. She made some noises like she was trying to communicate with me. After a few minutes, I had to leave; I stood up, kissed her forehead, and told her that I would see her later. I never said "Good-bye" whenever I went to see her. I left her room, met her best friend at the nurse's station and then we left the hospital.

The next day I was watching TV and my sister came downstairs and told me Mom was gone. The news didn't hit me as hard as I thought it would. We all knew it was going to happen. We just didn't know when and that was the hard part for me ... not knowing when. I felt relieved knowing that my mom's long hard year of hell was finally over. My sister called and asked if I wanted to see her because she was still in her room. I said that I wanted to, not knowing if I could or not.

As my sister was driving me there, I got butterflies in my tummy and I started feeling ill. My sister parked and told me she would catch up, so I walked into the hospital down the long hallway telling myself that I could do this and that everything was going to be okay. When I got to the second floor, my mother's best friend and her husband were there. She gave me a huge hug and I told her that my mom had "come to see her" on Friday night. She told me that my father was in her room with a pastor, so I walked in, gave my father a huge hug, and started to cry on his shoulder. The pastor said he was going to leave us alone and he left and shut the door.

When I let go of my father, I looked at my mother. She looked so peaceful . like she was asleep ... although she was not going to wake up. I sat beside her and got up enough courage to rub her arm. My father went to the other side of the bed, kissed her forehead, and told her that he loved her. I also went to the other side of the bed and rubbed her hair, which I never thought I would do; but for me, seeing her lying there helped me to deal with this terrible thing. I bent down and kissed her forehead, and said to her, that I knew where ever she was; she was at a better place. I told her that I loved her and then I left the room.

My mother, Judy Lidgate passed away on August 17, 2003 at the age of 56. I know wherever she is; she is finally at peace.

My girlfriend Judy passed away from ovarian cancer August 17th, 2003 after putting up a tremendous battle. Judy was a very inspiring woman and she meant a lot to so many people. I would like to share this glimpse into her life with others.

It is difficult to find words that even remotely describe the essence of my girlfriend Judy. Simply put, Judy was a “Classy Broad”. Judy meant so much to so many people. She was such an upbeat positive person! Judy inspired many people over the course of her lifetime. Family and friends were top priority to Judy. Surrounded by her "little" farm animals, her beloved dogs and cats, Judy created a warm and inviting home where everyone was welcome. Her two daughters Nikki and Shelby were her pride and joy. Her husband Don was the love of her life, her true soul mate. She loved her mother Molly. Judy’s life was made complete when her daughter Shelby gave birth to her grandson Austin. To Austin, Judy was simply “Mugas”. Mugas adored her little man. Judy was blessed with much insight into life. Honesty, fairness, trust, understanding and acceptance of others were values that were very dear to Judy. Judy cared very much for her friends. She was wise, caring, compassionate and very empathetic to the needs of others. Judy knew intuitively when something was not quite right, she reached out unselfishly, and knowingly to help in any way she could with out having to be asked. Everyone who knew her enjoyed her great sense of humour and infectious smile. The room lit up when Judy walked in. Judy loved life. Judy may not be with us physically anymore, but her spirit will live on forever. She will be forever cherished and will live on eternally in the hearts of the many people who knew and loved her. Judy, thank you for sharing your life with us. We all miss you.

P.S. - My girlfriend, Judy died of Ovarian Cancer on August 17th., 2003. Before Judy was diagnosed with ovarian cancer, we both knew very little about ovarian cancer and gave it no thought. The purpose of this letter is to bring awareness of ovarian cancer to as many women as possible.

In the previous months before Judy was diagnosed with cancer, she did not feel quite right. Judy was always an energetic person, but she started to complain about feeling tired and having a lack of energy. She was concerned and frustrated. Judy noticed changes in her bowel habits, her back that was always a problem, seemed to be bothering her even more; she was having headaches and sleep problems. She had some “spotting” despite being post-menopausal. Something was not right and Judy knew it. She went to her family doctor more than once seeking help and answers. It was suggested that she was suffering from depression. Judy definitely was not.

Ovarian Cancer can strike at any age, but most cases affect women between the ages of 50 and 75 years. The average age when ovarian cancer is detected in women is 56.3 years. Unfortunately, 75% of ovarian cancer cases are diagnosed at advanced stages where survival rate is low. This year it is estimated that in Canada, 2,600 women -- one in 70 – will be diagnosed with ovarian cancer. 1,500 women will die from this cancer in 2003. Ovarian cancer has the highest mortality rate of all women's cancers.

Some risk factors are familial link for ovarian cancer in 10% of cases, never being pregnant, family history of breast, endometrial or colorectal cancer, history of infertility and early menstruation and late menopause.

There is no single early detection test available such as the mammography in breast cancer or the colonoscopy in colorectal cancer. The Pap test is not a test for ovarian cancer. Knowledge is the most important and the best weapon in the fight against this disease. Awareness of ovarian cancer signs and symptoms is most important.

Signs and symptoms are:

• Generalized discomfort in the abdomen, bloating, pelvic pain.
• Persistent but vague stomach upset – gas, feeling of nausea, indigestion.
• Non-specific bodily discomfort that persists or a feeling of uneasiness that you cannot explain.
• A feeling of early satiety -- feeling too full for no valid reason.
• Loss of appetite.
• Unexplained changes in bowel habits … feeling constipated or needing to urinate frequently in the absence of an infection.
• An unexplained weight gain. “Swelling in the abdomen with no pain” or unexplained weight loss.
• Pain during intercourse.
• Fatigue unrelieved by bed rest.
• Back ache.
• Sometimes unusual bleeding from the vagina.

In a survey done in 1999, it was found that less then 1 out of 10 women surveyed had no symptoms before diagnosis. In other words, more than 9 out of 10 women had one or more symptoms before the cancer was detected.

If you have any of these symptoms and they persist for longer than two to three weeks, make an appointment to see your family doctor immediately. It is important though to remember that these symptoms and signs are not unique to ovarian cancer. If after seeing your Doctor, you still have concerns, go see him or her again to discuss these concerns, and after that if you are still having questions, doubts or concerns seek another opinion from another doctor or insist on a referral to a gynecologist. Be persistent!!

My girlfriend and I had many intimate talks while she was fighting to live. The one talk that stands out the most is when she said to me, “ Girlfriend, Get to know your body. Be aware of changes, follow your instincts and if something does not feel quite right, do not hesitate to go see your doctor. Ask questions, demand tests. Be a “thorn” in your Doctor’s side."

ALL WOMEN SHOULD HAVE A YEARLY RECTO-VAGINAL PELVIC EXAMINATION.

For those women who are at high risk of developing ovarian cancer, a CA125 blood test with a transvaginal ultrasound may be used as a screening tool.

If even one woman’s life is saved because of this letter than Judy’s fight against ovarian cancer will not have been in vain.

Exactly what is a Recto-vaginal pelvic examination?
ANSWER: In a full recto-pelvic examination, the doctor feels the abdomen for hardiness or lumps and for any signs of enlarged ovaries, uterus, bowel or appendix. He or she will ask you if you feel any tenderness. It should NOT hurt when your doctor is conducting this examination. It may feel a little uncomfortable but you should not feel pain.

The doctor will exam the external surface of the vagina feeling for lumps or sores.

Next, a speculum, a device that holds the walls of the vagina open, will be inserted. The doctor will exam the vaginal walls, and your cervix and does a Pap smear.

This is followed by a manual examination. The doctor inserts two gloved lubricated fingers into your vagina while pressing gently on your abdomen. This is how she or he checks out the surface of your uterus, ovaries and fallopian tubes.

Finally, the doctor performs a rectal examination. If your doctor does not make this exam a regular practice, ask about it. This is a very important part of your examination. The step, in which one finger is in the vagina and the other is in the rectum, helps detect rectal lesions and growths (an early sign of colon cancer) and helps point out endometriosis, ovarian cysts/tumours, and the alignment of the uterus and other pelvic organs.

Last September our family's world fell apart when our Aunt LANA was diagnosed first with breast cancer...she had a huge lymph node under her arm so she was taken in three weeks later to have her left breast removed (little time to recover from that surgery) and they found spots on her ovaries so she was back in 2 weeks later for another surgery..which I understood once they opened her up it was too much so they closed her back up..again this is all foggy but it was definitely made clear that her cancer was incurable and she was given a year..we all feel so helpless and she has had such a hard time w/ her chemo treatments and her nausea, vomiting..When I talk to her though she seems insistent on "fighting" for her life...we have so many loved ones and friends praying for her..anyhow I am rambling too, I'd just like to talk back and forth and have some support pals I can gather info and even relay to her when she is so down and weak from this awful hated disease...encouragement to fight it and hopefully extend her precious life as we all love her so so much.

This is the story of my mother and her death. In April 2003 she began having severe abdominal pains and vomiting. Over the past few months her abdomen had been enlarging (something she was very upset about). She went to the doctor and he treated her for a UTI. She became worse in two days and went back to see the doctor. This time he sent her immediately to the ER for tests and treatment. She was so sick by now and she could hardly function because of the terrible pain. In the ER they did an abdominal ultrasound and found an "18-cm necrotic tumor" on her ovary. A gynecologic oncologist was immediately consulted and ordered tests and scheduled surgery for a few days later. I overheard the specialist tell a nurse that she suspected stage IV ovarian cancer. She ordered a CA-125 as well.

Since my mother had heart problems, she had to have cardiac clearance before surgery. This consult led to them doing a heart cath and then an angiogram with stent placement the following day. That day at 1:09 p.m. she died on the operating table while undergoing the cardiac procedure. The cardiologist had no idea what happened; she just went into cardiopulmonary arrest and they couldn't bring her back despite a long period of trying.

We never found out for sure that she had ovarian cancer but the doctors felt sure she did. I miss her so much; it was such a shock to lose her so suddenly. I was dreading that she might have to go through surgery and chemotherapy for possible ovarian cancer, but I certainly didn't expect to lose her that day.

All the stories on this site are very comforting and show great spirit and courage. Good luck to everyone here.

November 13, 2003
Fuzzy Wuzzy is what I called my Mom when her hair started growing back after chemo. Today is Fuzzy Wuzzy's birthday. She would be 59 today. This is the 2nd birthday we've celebrated without her. She was not only my mother, but my very best friend. She raised my brother & I alone when my father died at the age of 31. My mother was an incredibly brave woman who I respect with all of my heart. It is so hard to think back on all of the horrible times like when she was finally told (in not so many words), that there was no hope left. What a feeling of helplessness to have your hero wheeled past you on a stretcher after x-ray, grabbing your hand and looking you straight in the eye "Tam, I don't think I am going to make it." For as long as I live I will never forget that day or the moment she took her last breath. I will never forget how incredibly wonderful it felt to lie wrapped up in her arms so safe & warm. I will NEVER forget what an incredible woman she was. Happy Birthday Mom.

I'll do my best to summarize what has happened over the past year of my life with cancer. Although it's difficult, I want to give hope to anyone out there that has just been diagnosed. I sincerely care and want to help you. I know how you feel. You are not alone. You are me a year ago when I was diagnosed with ovarian cancer stage 4. The most advanced stage of oc. Let me tell you about my journey so far... I had vague symptoms over summer 2002. Bloating, swelling on right side, constipation. Diagnosed myself as another case of IBS or possible ovarian cyst (have a history of ovarian cysts in my early 20's, all benign but resulted in 2 operations to remove them along with part of each ovary) Wasn't overly concerned because if it got worse I would deal with it then. I wasn't in pain just minor discomfort so why should I worry ...."it's not like i have cancer".

AUGUST: I took a trip to Pennsylvania to see my Family. Family members noticed a weight loss and were concerned because I have mentioned to them on the phone about my symptoms. Of course theY told me to go see a Doctor because after seeing me they thought something was wrong. I still felt no real sense of urgency. As far as the weight loss, I thought I looked good and as far as other symptoms I just attributed them to something minor.

SEPTEMBER: Symptoms seem to be the same or possibly even subsided.

OCTOBER: A couple of bad days. Started to have pain during intercourse. Stomach bloating so bad forced me to wear baggy dresses on certain days. I'm getting anxious and concerned. Seriously considered calling a Doctor. But I didn't.

NOVEMBER: In addition to previous symptoms I started to feel run down with flu like symptoms especially nausea. . Called the Doctor to make an appointment for a blood test. Went to see him and he sent me straight to the emergency room. He was concerned that I may have a bowel obstruction. My husband can fill you in on details of what was to come. (Ron's Story) Diagnosis: ovarian cancer stage 4, Inoperable. I can only tell you that in November 2002, I was told...you have cancer... Initially, I didn't think about the seriousness of what I was told. I just wanted to feel better. Whatever was that was wrong, let's just fix it.

DECEMBER: "Merry Christmas" Lost my hair, lost more weight, and developed sores inside and around my mouth. Couldn't keep any food or drink down. These are the side effects about one month after my first treatment with chemotherapy Taxol/Carboplatin. Highest possible dose. Considering I only weighed about 110 lbs I was bound to have some side effects. My sister was so upset she called the Doctor please what can I do...I'm a nurse...Just keep giving her pain medicine...What do you expect...This is cancer...My husband would not just give up and just let me die...He told my sister to get in the car..."we're going for a ride". Their story: Cellquest

JANUARY: Happy New Year and "Happy 17th Birthday Jenny" ca-125 dropped 100pts. Doctors will Operate. Thank You "Cellquest" I believe if I didn't have the cellquest, I wouldn't have been healthy enough for the surgery.

FEBRUARY: "Happy 46th Birthday Ron" Surgery went well. Debulking. Total hysterectomy, removed spleen, most of colon (all but a few inches), 2 lymph nodes. Hospital stay 7wks.

MARCH: Recovering

APRIL: Celebrated our 18yr Wedding Anniversary!

MAY: "Happy 15th Birthday Stephen"

JUNE: . JULY:

AUGUST: Happy to say I turned 44 today 8/20/59. Feeling good.

SEPTEMBER: ca 125 is 94. Feeling good.

OCTOBER: ca-125 is 88. This has been an incredible month for me. I feel great! Hardly think about what has happened and I'm able to live in the moment most of the time. I have been waiting so long for my life to be ordinary again. I am now on maintenance chemotherapy. This is something new that has promising results to keep the possible "hidden cancer" away. Although this disease has a grim prognosis, don't let anyone tell you how much time you have. THIS DISEASE IS MANAGEABLE. That is my realistic point of view. Focus on Hope, Healing and the Life ahead of you. Let me tell you the DO'S and DON'TS that have worked for me. DO: "LOVE TRULY DOES CONQUER ALL THINGS" Every thought word and deed do it with Love. Surround yourself with Family and Friends that you can share your fears with and then release them to God. Ask for his guidance that whatever the outcome, you can handle it. Meditate, slow breathing. Breathe in count to 7, release counting to seven and again. About 3 times works for me (Thanks Billy) I eat my daily portions of what I call Therapy foods. Which are the following: 32 oz. of cellquest, 8oz. canned red raspberries mixed with 8oz. yogurt( twice a day), oatmeal & honey, green tea & honey, salmon twice a week, broccoli a few times a week. I avoid red meat, dairy, sugar (well I try. I've been having my daily dose of kit-kats). Say the Rosary whenever you can. Even if you say part of the Rosary a day and finish by end of week. I have always had a very strong faith in God although I do pray more now. The Sacred Heart, The Blessed Mother, and St. Peregrine Patron Saint for cancer, I attribute my sense of well being in them. Don'ts: DON'T EVER GIVE UP.

The reason we started this site cancerarmy.org is because when I was first diagnosed I didn't know where to turn. I went online looking for information on ovarian cancer. There wasn't much information available at first. It was there, I just couldn't find it. It took me months before I was actually able to find information that helped me with my anxiety other than medical facts. What helped me the most was Personal Stories. That is why I am giving you my personal story. The name cancerarmy came from the fact that when you go online and type in cancer, this site will be easy to find. The name army is a simple way to put myself in a group that symbolized a fight for freedom from this terrible disease. Only we are armed with Faith. There will be highlighted words in my story that I will elaborate on. Just click on the words for more information.

I was diagnosed with ovarian cancer at the age of 17. I just knew something was wrong but at 17 who thinks of cancer?? I finally got scared when I went to a beach with some friends and when I laid down my stomach wouldn't sink in and it started feeling hard. I went home and told my mom, "You have to take me to the doctor."

Well, the initial diagnosis was that I was 5 months pregnant and when I insisted that unless it was immaculate conception, something else was wrong and the doctor sent me for an ultrasound-then I was told I had a cyst the size of a football on my ovary and was scheduled for emergency surgery the next morning.

My worst experience of this whole thing was that my doctor and my surgeon both thought the other would tell me I had cancer so I was totally shocked a few weeks later when I asked the surgeon if I would keep getting these cysts and what to do about them-his response, "You have cancer and you need chemo and you are going to be very sick and lose all your hair."

Well, I can't exactly remember the few days following. I remember going to my room and didn't want to talk to anyone-I was so scared! Then my parents sat me down and told it like it was and of course we all cried. It was decided I would go to a bigger city for treatment to a children's hospital.

Well, the whole cycle of chemo-two weeks off, one week on...well, I met a lot of great people and had a lot of bad and good experiences but mostly remember the good and 12 years later...here I am, even though I am not supposed to be!! Jayna

In September 2001 surgery I was diagnosed with stage IIIa clear cell ovarian cancer. A year later The Kansas City Star published my story. I own the copyright, and you have my permission to post my story.

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Kansas City Star - Monday, September 2, 2002

EVERYTHING CHANGED

A year ago the phone rang: 'How about surgery tomorrow?'

For September, Ovarian Cancer Awareness Month, writer Donna Trussell decided to tell her story. After an oncologist removed a mass the size of a small grapefruit, she had a 30 percent chance of surviving five years.

By Donna Trussell

Special to the Star

At first I wanted to say: No, that can't be. I'm not a cancer person. Cancer is for other people, like getting a tattoo or eating squid. Fine for them but not my style.

And this wasn't just any cancer.

I first noticed vague symptoms two months before, but I attributed them to the advancing of menopause. After all, I was 47 years old.

I'd get severe bloating for a day -- I wanted to stick an ice pick in my stomach to let the gas out -- and then it would subside. I'd get constipated.

And I'd get tired. I bought some herbal teas and talked to my doctor about taking estrogen.

My final symptom was a low-grade fever, but that came along later, just before I doubled over with abdominal pain on a sunny August afternoon.

My doctor's nurse ordered me to the emergency room. I argued. Bad things happen in emergency rooms. But she convinced me to go and may have saved my life.

The first doctor I saw thought I might have diverticulitis. He mentioned the possibility of an emergency colostomy.

"No! That's not the way I do things. I do research. I get second opinions."

"You may not have a choice," he said grimly.

Within hours, I was given a blood test for CA-125, a protein associated with ovarian cancer. An ultrasound and a CT scan revealed a mass the size of a small grapefruit. My white cell count was high, and the doctors began pumping me full of antibiotics.

Two days later, on my birthday, I was still in the hospital when I first heard the words "ovarian cancer." Suddenly I wanted to go back to the colostomy scenario. Now it didn't sound so bad.

After I left the hospital, I was to be watched. If the mass got smaller, we'd know it wasn't cancer.

But the mass didn't shrink. My CA-125 was still elevated. My ovaries and the mass had to go. An oncologist would do the surgery.

I wanted nothing to do with an oncologist. An oncologist might drum up cancer cells just to increase business, right?

The oncologist in question was Verda Hunter. Her name had been in the news. She had turned pharmacist Robert Courtney in to the FBI for diluting chemotherapy drugs.

But I didn't want to see a Verda who specialized in gynecologic oncology. What kind of woman would go into a field where you watch people die? A woman named Verda, that's who.

I pictured a comedian in a leopard-skin, pillbox hat and cat-eye glasses with rhinestones. *Verda.* Well, let this Verda try to railroad me into unnecessary surgery.

On Verda's door was the word "oncology." I winced.

There was a form to fill out. I asked for a pen, and the receptionist pointed to a cup full of silk flowers.

"Pull one out," she said. The flowers were pens. "We haven't lost a single pen since we got those," she offered.

Verda. Fake-flower pens. I didn't like Cancer World, and I wanted to go home.

Verda didn't wear glasses or a leopard-skin hat. She was quite beautiful. And she didn't crack jokes. What really sold me on Verda, though, was that she didn't want to do surgery.

"Your ovaries feel normal size for a woman your age," she said. "You're a small woman, and if there were a mass, I would feel it. Let's do another CA-125. I'll bet it's gone down."

Dr. Hunter was my kind of gal. Overjoyed, I left a message for my family doctor: *no mass!* It was all one big mistake.

A few days later, though, Dr. Hunter's nurse called to schedule surgery. Dr. Hunter had seen the CT scan and changed her mind.

"But my symptoms are gone," I said. But, but, but...

"Let me read you the radiologist report," the nurse said. It was brutal. Radiologists don't mince words. My fantasy of a benign mass evaporated.

The surgery was scheduled in three weeks, at the end of September. But I had one more chance of reprieve: another ultrasound. Optimism faded when the technician skipped part of the exam because the mass was so large.

"If they can't see this, they're blind," she said.

The next day -- Sept. 11, 2001 -- I was watching the twin towers fall on TV when the phone rang.

It was Dr. Hunter's nurse. "How about surgery tomorrow?" I knew better than to argue.

It was all beginning to seem like a nightmare -- an exhausted, unshaven, melancholy Peter Jennings; ghoulish footage, repeated endlessly, of a jet liner crashing into the tower; and the immediate prospect of the most ominous surgery of my life.

If ever I felt like the world was ending, that was the day.

Just before entering the operating room I told the anesthesiologist about a news report I'd seen: A woman woke up during surgery unable to move or speak.

"Make sure you give me enough so that I don't wake up," I said.

"You bet," he replied in his best Wilford Brimley.

"But don't give me so much that I don't wake up at all. I want to wake up."

He smiled. "That's the idea," he said, patting my hand.

Oh, they were kind. All of them. My last sight before going to sleep was a masked face standing over me, and I thought I saw compassion in the man's brown eyes.

The next thing I knew I heard a voice saying, "This is Dr. Hunter. It's mostly good."

She was glowing with happiness, in fact, when she talked to my husband. She thought the tumor looked precancerous. I might be able to get away with an abbreviated course of chemotherapy or even no chemo at all. We'd have to wait on the pathology report to know for sure.

It was a decidedly more subdued Dr. Hunter who came to my bedside two days later. A biopsy revealed microscopic cancer cells beyond the tumor and ovaries.

I was Stage III. Advanced.

"What are my chances?" I asked.

"I'll tell you," she said, "but I don't want you focusing on that. The five-year survival rate for Stage III is 30 percent."

With the recent advances in oncology, one would expect to hear 70 or 80 percent. But for me, the odds were that I would die within five years.

"People think of a skull and crossbones when they think of cancer, but I want you to think of this disease as manageable," Dr. Hunter said. "If diabetics didn't get their insulin, they'd be dead in a week."

She may as well have been talking to the moon.

It was only later, when I connected with other ovarian cancer survivors whose doctors had all but pronounced them goners, that I discovered how fortunate I was. I had found a warrior doctor.

In the months that followed I also discovered the answer to my question: What kind of people go into a field where they watch people die? Not misanthropes, as I once suspected. Rather, people with courage.

In Dr. Hunter's office are makeshift signs that say, "Never give up on anyone. Miracles happen every day." A year ago such piety would have made me squirm, but everything takes on a new meaning once you have cancer. Dr. Hunter and her staff were not going to hand me over to the coroner without a fight.

For me chemotherapy was not the ogre of popular mythology, thanks to the drugs for side effects. During my six months of treatment I felt queasy for only a few days, and anemia was always short-lived. But I did lose my hair, including my eyebrows and eyelashes.

A friend wanted to take me wig shopping, but I told her that a local charity gives away wigs.

"But if they're free, you know they'll all be Midge wigs," she said.

Midge wigs?

"Midge, the neighbor in `The Dick Van Dyke Show.' "

Oh yes, the brunette with the short, tight curls. I found out my friend was right. I resolved to wear hats. Once my eyebrows and eyelashes were gone, whom was I kidding? Some women pencil in eyebrows, but I preferred the barefaced cancer patient look to that of the 1930s movie star.

I learned to forgive well-meaning friends who offered words of dubious comfort. One said my cancer was an opportunity to "grow spiritually." I left unsaid the suggestion that came immediately to mind -- that she could have a similar opportunity by jumping off a balcony.

An oncology nurse told me she could "get hit by a bus tomorrow." I later discovered that the bus comment is the No. 1 annoying response to a cancer diagnosis. One ovarian cancer patient said that the bus scenario isn't even a good comparison. It's too random.

A more useful analogy would be: You wake up in a strange place and you're told you *were* in a car crash. It was a 10-car pileup. Two or three of you will survive, but we don't know who, and those survivors will undergo debilitating treatments for the rest of their lives.

My last chemo treatment was in February. My CA-125 was normal, but only a CT scan could confirm my remission. My oncologist met with me to deliver the results: clear.

"Your chance of recurrence is 50 percent," she said.

I was entering a new era, one that unsettled me even more than my original diagnosis: waiting for recurrence. I told Dr. Hunter I was scared.

"But everything has gone exactly as we'd hoped. You did everything you were supposed to do."

"Well, it's not like I had a choice."

She looked away and then said quietly, "I know a little something about not having choices."

"What happened?" I asked.

"It wasn't cancer. But let's just say there was a certain pharmacist."

The chemotherapy patients would loudly gripe about Robert Courtney all day long, but I had never heard Dr. Hunter or any of her staff mention his name or refer to him -- or the effects of diluted cancer drugs -- in any way.

"Every morning," Dr. Hunter said, "I have to get up and look at myself in the mirror. Every morning I want you to get up and look in the mirror and say, `Today I'm healthy.' "

Sometimes you can see an enemy most clearly in the eyes of the soldiers. This doctor, who had dedicated her life to saving women, who had a reputation as one of the most caring and skilled oncologists around, would never be the same. The sadness is etched in her face.

As for me, cancer turned my life upside-down. Everything changed -- my sex life, my work, my dreams and hopes for the future, my sense of myself and my place in the world. Friends and family did all they could, but the loneliness of my diagnosis was unrelieved until I discovered an online support group of 1,200 ovarian cancer patients -- www.acor.org.

There I found solace among others who were living the same limbo existence. Most of these women signed their posts with date of diagnosis and organs removed. Here's one woman's list: spleen, appendix, all female parts, omentum, part of the intestine and colon, many lymph nodes.

"BUT," she wrote, "HE LEFT MY HEART!"

To comfort a woman whose sister was dying, I wrote about Anne Morrow Lindbergh's search for peace after her infant son was kidnapped and murdered. She tried every false path there is to recovery. Only one helped, the story of the mustard seed:

A woman who's lost a baby asks if there is a cure for her grief. "Yes," a holy man replies. "You must find a house that has never known sorrow, take a mustard seed from that house, and then you will be cured."

The woman spent the rest of her life looking but could not find a house that had never known sorrow. To suffer is to be human.

I resolved to stop comparing myself to people who live into their 80s and 90s. Instead I thought of the men, women and children on the Titanic who died an icy death far from home and of the doomed airline passengers on Sept. 11.

I, in contrast, expect to be in a warm bed surrounded by nurses and loved ones. And who knows? I just might survive, if for no other reason than to make trouble.

Twenty years ago ovarian cancer patients often died within one year of diagnosis. Now women are living two or three years, sometimes longer. Now we've formed groups, and we're trying to change our terrible statistics.

We may not be able to save ourselves, but perhaps we can save our daughters and granddaughters.

Donna Trussell is a poet, fiction writer and former editor and film critic. She lives in Prairie Village. Her husband, Robert Trussell, is the Star's theater critic.

Donna Trussell reports that she bought the prettiest hats she could find, forgetting that hair automatically goes with any outfit but hats do not. The hat she wore most was a plain black beret.

I am 56 years old and was diagnosed with Stage IIIC in October of 2002. I had gone to my gyn for several years with complaints of pain and recurrent UTI's. Two Sonograms were done and a CT scan but both showed negative. My doctor was on vacation when another doctor saw me and decided to run a CA125. Guess what--it was elavated. A laproscopic sugery was done and tumor removed. They wanted to start me on chemo, but I had read that if an onc-gyn does not do the debulking your survival chances drop. I headed for MD Anderson. they removed tumor that had been left from the first surgery and I started on chemo. I have been through 8 round of Carbo/Taxol and a second look surgery. After my second round of chemo I had a stroke. they said that chemo makes tour blood thick. I have my doubts about that. Anyway my second look was negative and I am now on consolidation therapy with Taxol for a year. I am thankful that my body responded to chemo. I have a friend who did not and is now terminal. My advice to someone who is diagnosed with this disease is to learn as much as possible about this disease and treatments available.

UPDATE

My mom, Felecia would want everyone to know that you have to keep fighting this beast until the fat lady sings. My mom, Felecia Guidry lost her battle to ovarian cancer August 29. 2005. She was diagnosed in October 2002. She kept the best attitude throughout her fight with ovarian cancer. She would encourage others at her chemo sessions and be the cheerleader. She passed away peacefully at home like she wanted to. I encourage anyone who reads this to listen to your body and if something doesn't feel right to keep searcing for an answer and find a physician who will listen.

May God Bless Those Who are fighting this

sonya froelich

When my wife Marlene was first diagnosed with OC(3c),we were filled with the same chilling fear many of you might be feeling now upon learning the dreaded news of your unexpected encounter with the Big "C".

But almost four months into her chemotherapy treatments, we are filled with great optimism and she has regained an incredible zest for life. Life 'almost' seems normal now as hope has displaced the negative thoughts that dominated at the outset.

We've come to discover the human mind is a marvellous organ. If you instruct it to assume a positive attitude in the face of daunting threats, you will not be disappointed in the many ways it channels you towards a fulfilling life despite the temporary limitations brought on by an unwelcome visitor within.

Ever since she decided to stare fear in the face after learning of her cancer, Marlene has truly blossomed…taking her life down new and challenging paths of self-fulfilment.

She has steadfastly refused to allow her cancer to stifle her will or reason to live. Although there are constraints brought on by her chemotherapy, she has nevertheless forged ahead with painting lessons, reading, garden visits, museum visits and a host of other activities. You can visit her own gardens at https://mywebpage.netscape.com/paddleprattle/gardens.html.

And through it all she deals with her "other" fears she has encountered in life; this week she conquered her fear of heights by being hoisted 200 feet into the air in a telescoping crane that was just fabricated by her former employer. She found the experience exhilarating but was happiest most because she had conquered another fear.

Marlene is halfway through her chemo treatments now and the "numbers" are very encouraging as she heads into the second half and I am convinced beyond doubt that her positive attitude has kept the more ominous aspects of her cancer at bay. I know this positive thinking is a difficult aspect of recovery to convey to those newly diagnosed, the rewards are real…and they are many. So knock on the door of your inner strength and fight on fearlessly.

My wife and I are both avid canoeists, and this is something I wrote to fellow canoeists at the time of learning of her cancer:

Have you ever wondered what is would be like to find yourself on an uncharted river, heading downstream with no maps and not the slightest idea of what lies ahead around the next bend?

My wife Marlene and I just made it back from such an excursion and I thought it might be of benefit to some of you to read this slightly abstract trip-log. While we were just putting our canoe into a calm water section, an experienced guide who joined us on this expedition had already crossed over to the other shore and scouted her way down the river to size up the situation.

We were already inching our way downstream when we caught sight of her sending us signals of the dangers that lay ahead of us. She had already seen what was lurking downstream and was trying her best to communicate the severity of the situation to us.

But we were already into the faster moving water and could barely hear her above the roar of the upcoming rapids just around the next bend. Her paddle signals were unfamiliar to us and we failed to believe what she was trying to say...that we were headed straight into some very turbulent waters.

Within minutes, we started to grasp the full meaning of what she meant. But there was no turning back to the safety of calm water now....we were at the crest of the rapids and we had to concentrate on lining up our canoe into the safest possible line to get through this together.

What initially seemed like a class II rapid suddenly mushroomed into a terrifying and treacherous class V funnel of fury with wall to wall frothing foam cascading over protruding boulders. Our eyes locked together for a few seconds and we immediately felt a fear rising in us as our hearts pounded faster.

Marlene knew what was coming now and braced herself as best she could to keep the canoe from swamping in what seemed like an endless series of rough-edged boulders as we skirted by huge suction holes in the raging water.

Most great whitewater rivers have at least one section appropriately named the Gates Of Hell or Meat Grinder which usually require portaging. Well this one was named Scalpel Run and it certainly filled us with equal fear...but there was no possibility of finding a safe portage route now.

Marlene bravely guided us through this hellish section only to find ourselves heading straight into a fallen sweeper tree that lay across the only channel open to us. There was no time to avoid it. She lay back low in the canoe but the sharp branch stubs ripped into her lower abdomen and gouged deep inside of her and then withdrew as the force of the river pushed her under the sweeper and down the last remaining haystack waves.

At last we spotted an eddy that would hopefully allow us to momentarily pull out of this frightening descent. With the fire of a fighter in her eyes, Marlene used all her remaining strength to thrust her paddle deep into the edge of the eddy and pull us around into safety behind a huge rock. With nerves still numbed by the horror, we made eye contact again and found comfort in knowing we were still in this together...ready to fight our way down the rest of these rapids.

We are still in those rapids right now as I write these words. If you haven't already guessed, I have presented this trip log in a metaphorical sense to depict a real-life situation we are living at the moment.

You can read back now and make the appropriate substitutions; the new undiscovered river was the hospital emergency ward, the guide was the doctor/surgeon, the scouting was a CT scan, heading to the crest of the rapids was learning Marlene had two advanced malignant ovarian cancer tumors and a host of smaller cancerous nodules within the abdominal cavity, the Scalpel Run was a complete hysterectomy and the safe eddy is her temporary resting spot before starting intensive experimental chemotherapy sessions next week and lasting six months.

You might be wondering what prompted me to write this trip report. I'm not completely sure myself but I think I can narrow it down to three principal reasons; The first is a purely selfish and self-serving use of this forum as a medium of self-therapy in expressing my thoughts openly rather than claming up in an emotional shell of silent sadness.

This is not an appeal for pity…we've already been through the weep and anger stages and are now focusing only on things positive. The second reason is a personal request to any of you who know a "Survivor" within your family or circle of friends who has made it through to the remission stage after chemotherapy for ovarian cancer. Marlene would like to communicate (via e-mail) with those who have been through the battle zone to better prepare her for the journey that lies ahead and also to boost her hopes of coming out a winner. The third reason for writing this story, and the most important in my view, is to urge those of you who have loved ones (mostly close to middle age) to "insist" on those thorough check-ups. If they try to dodge the issue, badger or hound them endlessly and be an annoying nag if you must but make sure they go to see their doctor and preferably a specialist if in doubt whatsoever about lurking symptoms of ovarian cancer.

Things can change rapidly. Marlene had a clean bill of health only six months ago. She is a healthy person heavily involved in tennis, badminton, biking…and of course, canoeing. I know this may seem irrelevant to many of you. You may feel you are immune to such life situations, convinced in your mind that these rare "disturbances" happen only to others and not to those close to you.

That was my exact frame of mind the weekend before this trip to the hospital. Marlene wasn't feeling perky enough to join a group of friends on a day-trip canoe outing on the Jacques Cartier River but she did offer to shuttle everyone to the put-in before going home to rest. Just some normal intestinal bloating accompanied with "that time of month" symptoms, we thought. How wrong we were.

We'll soon be resuming our journey down our newly-named River of Hope, we know better now what to expect in the way of pitfalls along the way but Marlene has honed her paddling skills and I know she will make it through to the take-out in six months time . Once there, we will take time off to savour the tranquil calm of Remission Park and travel less turbulent waters.

Derek Hill
[email protected]

In 1996 I discovered vaginal and rectal bleeding. My stomach was bloated, and I felt a great deal of abdominal pain. My energy level was gradually diminishing. And off I went to a few of the University of Wisconsin clinics. I was given some medication to help the bleeding. It was thought that I was "emotional" due to my upcoming marriage. A few months later, a cyst was removed which was benign.

Instead of becoming more mobile and symptom free, I became very sick. I was extremely tired and found it difficult to continue daily activities. I had constant frequency of urination. My enlarged abdomen was very painful. Eight months after my cyst, same day surgery, I ended up in the ER at Meriter with vomiting and such intense pain I could not walk.

I was referred to a urologist as the ER docs thought that I was passing a possible stone or may have gall bladder problems.

The urologist ordered a cat scan and knew that I was involved with a gyn ovarian serious problem immediately. He then called a gynecologist and made an appointment within the next few weeks for me to be seen. I was then seen and surgery was scheduled a week later.

After many hours of surgery on 4/21/97, the gynecologist met with my family to tell them that they were able to remove my cancer including one lymph node and spleen. What was left was a "snow" on the abdomen.

After 7 days in Meriter Hospital in which I received wonderful, and nurturing care, I was sent home with a follow-up visit to the gyn doctor. Each day I, again, became sicker with nausea and eventually experienced breathing problems. Another trip to the ER was warranted. At this time, the pain had to be controlled as it was unbearable. I entered Meriter again this time with complications from my prior surgery. I had pneumonia around the lining of my lungs. It was very solid and I needed chest tubes and treatments to try to break up the solid mass so it could drain. It was successful and I was soon to be released to go home. I was very pale and still in extreme pain and could not eat.

My husband then asked if I could be seen by the surgeon on call. The surgeon gave me a cat scan and blood work and I needed emergency surgery because I was bleeding in the stomach. You see the infection had started in the stomach but I had only had treatment for the chest. I knew it was very serious as I was getting frozen blood. And the pain was not being able to be helped by anything. The nurse who was with me told me later that she couldn't even find a good time for me to go to surgery, so, I just went. I do remember the surgeon saying that I had a 50% chance of survival. I began to pray and couldn't remember the prayers so I just talked to my Higher Power from my heart. I wasn't sure I was going to wake up alive. Just before I received anesthesiology, I felt peaceful and just "let go" of my life and placed it in my Higher Power's hands.

I awakened on a ventilator. Within days, I was back on my favorite floor where the nurses were so caring, loving and kind. The process of healing began. Many weeks later, I returned home with home health care for a few months.

Within four months, I was walking outside a little at a time. And, of course, I was receiving chemo again. During this time, I was surrounded with care, love and prayers of my wonderful husband and family. With the love, support and prayers, I felt like a warrior and winner at life.

My thoughts during that time were just gratitude to be alive. I tolerated the pain and discomfort of healing just fine. When the going was tough, I would just live in the minute or 5 minute period at a time trying to enjoy what was going on at the time. Being able to lay in a comfortable position and listen or watch television was the greatest blessing! I never went into the anger phase grieving over my cancer diagnosis. I was just too happy to be breathing and be with the ones I love.

Later as the months progressed and physically I healed, I then had the mental torment of fear of dying. I was terrified with the statistics of 24 months as the average survival time for this advanced disease. There was such a pain inside in my heart that I could hardly cope. I knew I was going to have to develop coping strategies.

Since 1997, I have continued treatments. I have had a length of time to practice my coping strategies where I am currently in this journey. I decided quite awhile ago, that this disease may have my body, but it's not going to touch the quality and joy of my life. I have control over that!

SUMMARY

Diagnosed 4/21/97 3c, papillary serous adenocarcinoma, low grade ovarian cancer at age 48.

First Treatment: Taxol, Carboplatin (1 cycle) sensitive, (5 cycles) of carboplatin/cytoxin, June 1997.

Second Treatment: Carboplatin/cytoxin (3 cycles) not effective. Topotecan (5 cycles, not effective), spot radiation (11 treatments) effective, June 1998.

Third Treatment: Radiation to the whole stomach (21 treatments) January 2000.

Currently: CA125 low 200's, tamoxifen 40 mg. twice a day per MD Anderson Cancer Center.

Living Day to Day With Love and Faith

Pam's and Nina's stories, written by journalist Sherry Anderson, are reprinted with permission from the Southwest Orlando Bulletin.

On a quiet street in Southwest Orlando live two women whose lives have followed similar paths in more ways than they ever expected. They each have two daughters, and over the years, they have had their fair share of homework, trips to malls, and carpooling to friends' houses and after-school activities. They also have had their own work and volunteer commitments. The similarities in their lives are noticeable, but what most people do not realize is that these women share a bond that goes beyond any neighborhood, school group, or car pool. They know and understand what it is like to face life-threatening illnesses and meet them head-on with unwavering strength and determination.

Pam's Story

Pam Fogle is well-known to many families in the Southwest community. Wherever her daughters, Jennifer and Heather, went to school, Pam also was there. She served as ADDitions coordinator at Dr. Phillips Elementary School; president of the PTA at Bay Meadows Elementary School for the first two years the school was open; treasurer and president of the PTSA at Southwest Middle School; and vice president and president of the PTSA at Dr. Phillips High School. Today, students still remember her as "Mrs. Wishy-Washy" the storyteller, as the queen of England at BMES's World Bazaar, or as a familiar face at ballgames and school events.

"Children are my life," Pam once said, and her volunteer efforts have been recognized with several awards, including Orange County Council PTA Volunteer of the Year and a regional award for the Kraft/Walt Disney World Volunteer of the Year. In her honor, Bay Meadows PTA annually presents the Pam Fogle Volunteer Award to one parental volunteer and one fifth-grade student who show service to the community through volunteerism.

In the fall of 1994, Pam and her family were looking forward to a relaxing trip to the Florida Keys before another busy school year got under way. Heather was 13 and in the eighth grade at SWMS, and Jennifer was a 16-year-old junior at DPHS.

"We were on our vacation in the Keys when I had a severe ulcer attack," Pam said. "I had been on medication for ulcers in my stomach and esophagus for several years, but I had been eating all the wrong things - like fried foods and margaritas. Usually within 10 to 12 hours, the pain would subside. This time it lasted for three days, and I finally told my husband, Bill, that I needed to go to the emergency room."

At Fisherman's Hospital in Marathon, Fla., Pam was given medication and told that if it was an ulcer attack, she would feel better within a few minutes. The pain continued, and doctors ordered a series of X-rays and a sonogram. The tests indicated that Pam had gallstones, and the doctor wanted her to have emergency gallbladder surgery. But Pam wanted her family members to enjoy their vacation, and she wanted to consult with her own doctor in Orlando before having surgery. She was given some medication to ease her symptoms and agreed to see a surgeon the next day, just in case her symptoms worsened and emergency surgery was needed.

"He was the one who told me that they also had seen a small mass in the pelvic area, and he felt like I needed to see my gynecologist," Pam said. "I went right to the phone and made an appointment with my primary-care physician to see me when we got back home."

Pam's primary-care physician agreed with the surgeon in Marathon that Pam should have her gallbladder removed and consult with a gynecologist, even though she had been unable to detect anything out of the ordinary during Pam's pelvic exam.

"When I saw the gynecologist, he said the same thing," Pam said. "He said there might have been something wrong with the X-ray film. I thought, Well, that's what it was. After all, I had had two pelvic exams."

Pam did not know it at the time, but Bill was not reassured and asked the surgeon performing the gallbladder surgery to look at her other organs while he had the laparoscope inserted.

"The surgeon noticed a large mass about the size of a saucer on my right ovary," Pam said. "He contacted my gynecologist, who asked for a Ca125 blood test immediately. I went home to wait."

Pam waited for five long days before hearing the news that her blood count from the Ca125 test was almost 400. A normal range is 0 to 30. Pam was referred to Dr. Neil Finkler of the Walt Disney Memorial Cancer Center at Florida Hospital and was told that she would have to wait another week to see the doctor.

"My mother said, 'No way are we going to wait,'" Pam said. "So she got on the phone, and I got in to see him in two days. My mother was very strong through all of this."

Before Pam saw Dr. Finkler, a friend gave her some valuable advice.

"She said, 'Pam, when you go, you make sure you feel comfortable in this place, because you are probably going to spend the rest of your life going there for checkups. You need to be comfortable with everything, not just the doctor.'

"At the time, Dr. Finkler was in a little office across the street from the hospital, and it was packed," Pam continued. "I walked in, and it felt like I had an immediate bonding with everyone in the waiting room. [The staff was] so sweet and so loving, and the doctor came in and was like a knight in shining armor. I knew I was in the right place."

Dr. Finkler's exam detected a large mass on Pam's left ovary.

"I knew the surgeon said that he saw something on the right ovary, so I knew I was in big trouble," Pam said. "At times, I felt like I was watching a bad movie. The actors were great, but the story line wasn't."

It had been only six days since Pam's gallbladder surgery, and her body still needed to heal. She would have to wait two weeks before having a complete hysterectomy and almost another week to get the pathologist's report, which confirmed that she had Stage III ovarian cancer.

"Dr. Finkler did not feel that I needed chemotherapy right then," Pam said. "He felt very positive [that all the cancer had been removed]. I remember I asked him if I was his wife, would he recommend chemotherapy at this time, and he said definitely not, because he did not like the idea of putting toxins in the body if we didn't have to."

Pam saw Dr. Finkler every month and regularly had Ca125 blood tests. Her count stayed around 17 to 23 for approximately six months, and then it began to slowly rise. By October 1995, one year after her hysterectomy, her count was up to 78, and laparoscopic surgery revealed the same cancer cells in her stomach. Chemotherapy could no longer be avoided. In January 1996, Pam began a series of six chemotherapy treatments, one every three weeks.

"I really didn't get that sick," she said. "I thought I was prepared to lose my hair, but I absolutely lost it. I can't describe the feeling. I thought I was ready, but I wasn't. Heather had the hardest time with me losing my hair. She hated it. She didn't even want to look at me at first if I didn't have on a wig, hat or turban. She was only 14, and Mom was not supposed to get sick."

Pam finished her last treatment right before Jennifer's high-school graduation.

"It probably helped me a lot that I kept myself busy with her activities and getting her ready to go to school," Pam said. "The house was constantly busy with the girls' friends. There were times I wish I had stayed in bed, but I didn't want to disrupt their lives."

Sometimes in the early morning hours when the girls were still asleep and the house was quiet, Pam would lie awake, and fear and doubt would creep into her thoughts.

"I would think, What are my children going to do? and How can I ever miss all of this?" Pam said. "I wanted to see my girls graduate from high school and college and get married and have my grandchildren. Then I'd kick myself, or if I was still down later, then maybe a friend would do it for me, and I would get over it. I never really dwelled on the thought that I wouldn't get well. I truly felt like I would."

Pam said she attributes her positive attitude to her faith.

"I turned it all over [to God]," she said. "From the day I found out I had cancer, I put myself in a constant state of prayer and thanksgiving. I believe that this is the only way I could have survived physically and emotionally. I think that had a lot to do with my attitude - and the fact that my family and friends always seemed to be there whenever I might be hitting a low point. I couldn't have asked for them to be any stronger."

Pam said she even received cards and letters from friends of friends.

"It really lifts you up to think someone has thought about you," she said.

Now when she hears about someone who has cancer, she always tries to write the person a note of encouragement.

Pam has continued to depend on the love and support of her family, including her parents, Art and Martha Beach of Winter Garden, who have been by her side for every procedure and treatment.

Last year, Pam's Ca125 count began to rise again, and a computerized-tomography, or CT, scan revealed a small spot on the outside of her left lung. A needle biopsy determined that it was the same cell as the ovarian cancer. In April 2000, Pam began another round of six chemotherapy treatments. Her daughter, Heather, now a college student at Santa Fe Community College in Gainesville, came home last summer to care for her mother.

"I felt like I'd lost my best friend when she went back to school," Pam said.

Jennifer, who is in a management-training program with Macaroni Grill, is living at home again and keeping an eye on Mom.

Pam is in remission and is going every three months for her blood tests.

"I'll go through chemotherapy as many times as I have to, if that's what it takes," she said. "You do what you have to do. You pick yourself up and dust yourself off."

Recently, Pam had a positron-emission tomography, or PET, scan, which is similar to a CT scan. Glucose is injected into the body, and if there is any cancer present, it will show up like a hot spot. Pam feels that insurance companies are hesitant to authorize its use because it is an expensive test. Its real value to her came in the form of peace of mind.

She tries not to think about what might have happened if she had not had the gallbladder attack that prompted the X-rays. She always kept up with her annual visits to the gynecologist, and she never had any discriminating pain. In her early 40s, she was under the typical age for the onset of ovarian cancer.

"Ovarian cancer is so hard to diagnose because the symptoms are what every woman goes through at one time or another," Pam said.

Throughout her ups and downs with cancer, Pam has remained an active mother and volunteer. Four years ago, she also became a school employee as an office clerk at Bay Meadows.

"The Bay Meadows family has been so good to me," Pam said. "The teachers and the staff were there for me every day. They helped look after my family with food after each treatment. The children and their parents have been so supportive. I was concerned with how the children would react to seeing me with a hat on. They still came in and hugged me as if everything was the way it should be.

"God said that he will help those who help themselves, so I made it my challenge to try and keep a positive outlook. I guess that old saying 'When life gives you lemons, make lemonade' is true. Faith has been a constant with me. I have learned a lot from this whole experience. Life is so very precious. We should embrace every moment and learn to be more tolerant and understanding of people. We really shouldn't sweat the small stuff. I value life, family and my friends more every day."

Nina's Story

Just down the street from the Fogles' home is the house where Nina Bamberger lives with her husband, Andy, and their daughters, Lauren and Diana. Nina's story begins in a similar way - with another medical problem leading to the diagnosis of Stage IV ovarian cancer.

Nina describes herself as a full-time mother and full-time producer. She has worked for more than 20 years for Sesame Workshop, the producers of Sesame Street, and currently is the executive producer of Dragon Tales, a preschool series co-produced by Sesame Workshop and Sony Columbia Tristar Television. Dragon Tales is nominated for a Daytime Emmy as Outstanding Animated Children's Series, and when the awards ceremony is held in New York on May 18, Nina will be there as a winner, regardless of whether she comes home with the award.

Dragon Tales premiered on PBS in June 1999 and quickly became one of the top-rated preschool series on television. Traveling between Orlando, New York, Los Angeles and London would be exhausting for most people, but Nina has always thrived on her work. When the year ended, she felt like she was on top of the world.

"I was at a point that I would consider to be one of my happiest and, I thought, healthiest times of my life," Nina said. "When I'm in Orlando, I work at home, and I think I've always been able to balance my two wonderful daughters' lives. I also was exercising and thought I was at a weight I should be. I had a ton of energy. I thought everyone was thriving. This was all a big surprise."

In remission from Stage IV ovarian cancer,Nina Bamberger relishes spending time with herdaughters, Lauren and Diana. Nina said, "Being a mother fills me with an indescribable fullness and joy."

A routine mammogram revealed a small cyst, and Nina was sent to a surgeon to have a sonogram and a closer look. She was not concerned, and the doctor confirmed that it was a benign cyst like others she had before. But the surgeon was concerned about her swollen lymph nodes, and he immediately did a needle biopsy. Again, Nina was not concerned. She assumed her lymph nodes were swollen from a recent bout of the flu. She was stunned when the doctor called her four days later with the pathology report.

"I thought he would call and say it was nothing, but he said he thought it was papillary thyroid cancer," Nina said. "He thought I had cancer in my thyroid and that it had spread to my lymph nodes."

Nina had her thyroid and lymph nodes removed, and she was surprised to learn when the pathology report came back that there was no evidence of cancer. The surgeon's theory was that, since only a small section of the thyroid was sent to pathology for a biopsy, it was possible that this section did not have any cancer cells, and the cancer probably would have been found somewhere else in the thyroid. At this point, Nina accepted his explanation and was optimistic, because thyroid cancer has a 95 percent survival rate and is one of cancer's most curable forms.

Prior to her thyroid surgery, Nina asked the doctor numerous times if she should have a CT scan to rule out cancer in other areas of her body.

"I must have asked a million times, and so did my husband and my mother, and [the surgeon] said, 'No, if any scans are needed, they will be done after your surgery.' And that is too bad, because if I had a full-body scan before my thyroid surgery, they would have found the ovarian cancer."

About three weeks after the surgery, when she began to feel better, Nina developed a new problem. She began to feel pressure in her abdominal area and was having difficulty urinating. It was on a Sunday, so she called her friend, Dr. Franz Ritucci, who practices at Florida Hospital Centra Care, an urgent-care center in Lake Buena Vista. He ran a test to see if she had a urinary-tract infection, and it came back negative. Suspecting that something more serious was wrong, he urged her to go to the emergency room for a CT scan.

The scan showed that she had ovarian cancer that had spread throughout her abdominal area and was in an advanced stage. Within the next two days, Nina was seen by her gynecologist and also a surgeon who specializes in women's cancers.

"Within 48 hours, I went from being this person who had always been so healthy to being someone who maybe had only 12 months to live," Nina said. "I was in complete shock. I don't think my husband and I fully understood what had happened to us."

This was on a Tuesday morning, and Nina was scheduled for surgery on Thursday. Top on her priority list was to spend time with her daughters. She was worried about Diana finding a dress for a dance, and so the night before surgery, she went on an outing to the mall with her girls.

On Thursday morning, Dr. Richard Boothby operated on Nina at the Orlando Regional Medical Center. Nina had a partial hysterectomy almost two years previously to remove a benign cyst, but her ovaries were healthy at the time and had been left behind. In this surgery, her ovaries and fallopian tubes were removed, as well as portions of her small intestine and bowel. Cancerous lymph nodes were wrapped around an artery, and after attempts to remove them from the left side of her pelvic area resulted in a nick in her artery, vascular surgery was needed. Dr. Boothby decided to leave some cancerous lymph nodes in her right pelvic area rather than risk further injury to her artery. He felt confident that all the tumors had been removed and that the cancer had not spread to any other vital organs.

The surgical procedure that is done before chemotherapy begins is called debulking, and Nina said, "Dr. Boothby did an aggressive debulking, which is exactly what a patient would want and is one of the reasons that I think he is a wonderful doctor. The second is his compassion. He visited me every day in the hospital and was available whenever I needed to talk to him. He believed in me and my power to try and heal myself and supported and encouraged me throughout my ordeal."

Nina's advice to other persons just learning they have cancer is to look at the physician's education, his prognosis, and his ability to listen to the patient.

"Make sure, in your gut, that you trust him and feel that he is listening to you," she said. "You must take control of your treatment from the very beginning. I have always been a fighter, and I knew I was going to fight this. I believed in my heart that I wasn't going to die, but I just didn't know what to do."

A friend gave Nina a book that provided her with hope and her first sense of direction. Love, Medicine and Miracles by Bernie Siegel, M.D., who practices surgery in New Haven, Conn., and teaches at Yale University, looks at the forces beyond conventional medicine that can heal a patient.

"Dr. Siegel believes that love is the most powerful stimulant of the immune system and that love heals," Nina said. "He believes that miracles happen to exceptional patients every day and that exceptional patients are those who have the courage to love and those who have the courage to work with their doctors to participate and influence their own recovery. He teaches you how to heal your life and fight for it."

Nina said that the book included three principles that she followed: to have a positive, optimistic attitude; to take charge of her own body and treatment; and to have a strong spiritual belief and trust in God.

"I knew I believed in God, but I had never realized how I needed to turn myself over fully to him," she said. "For example, being that compulsive, anal-retentive, type-A+ personality that I've always been, I got out my calendar and marked off all the chemotherapy treatments. I planned my entire life around this schedule.

"After my first treatment, my white cell count was too low to be able to have the second treatment. It was at that moment - I had written it all in pen - at that moment, I thought, Well, I either have to be depressed, or I can say that God knows when it's best for me to have this treatment, and this is not the right time. I went home and erased my appointments, and from that day on I turned it over to him. I had bad days, but I always felt God was watching over me and would take care of my family and me. I felt very loved and very calm, and this gave me strength to concentrate on other things."

To take charge of her own body and treatment, Nina wrote down in a notebook each medication, blood count, and doctor recommendation. She read with interest the information her husband found on the Internet. She talked with friends about treatments and lifestyle changes that had worked for others.

One of the first things Nina did was visit a nutritionist at the M.D. Anderson Cancer Center, where she was having her chemotherapy treatments. The strict diet she followed included low-fat foods, protein shakes, plenty of cooked vegetables, whole grains, vitamin supplements, limited sugar, no caffeine, and no alcohol.

"I used to begin every day with a Starbucks coffee and a bagel," Nina said. "Now I was drinking herb tea and eating oat bran. But for me, the diet was another way I could control my health, and that was very empowering."

Andy prepared daily protein shakes for her and also took over some of the cooking for the family. Friends frequently brought food, including a good friend who is still bringing homemade vegetable soup each week. Nina's mother, Maria Elias, lives in Winter Park and devoted much of her time to caring for Nina and her family.

Nina encourages others who are ill to ask for help and to accept it.

"You have to keep your strength, and this is something that those who love you can do for you," she said. "It makes everyone feel good."

Nina said her friends and family were phenomenal, but she struggled to find words adequate to describe how supportive, strong and loving Andy was and continues to be.

"The hardest part was watching our children trying to cope with a mother who could no longer drive the car pool, who lost 20 percent of her body weight and all of her hair, and who was someone who was often bedridden, tired and sick," Nina said. "The thing I tried to do most often was to talk to them about everything. I didn't want them to think that we were keeping something terrible from them. Since I always believed that I was not going to die, I wanted our children to believe it."

On good days, Nina enjoyed time with her family and continued working and traveling. She also returned to the gym to work out.

"It was not the same intensity, but it made me feel like I was doing something to get my strength back," she said.

She also tried alternative therapies, including weekly acupuncture sessions. Some of the treatments were designed to help toxins pass through the liver more quickly, and other needles induced relaxation. Her oncologists at M.D. Anderson were open to her combining traditional chemotherapy with alternative medicine, and one of the doctors often passed along personal remedies that other patients had found.

"The important thing is to share everything with your doctor so that you don't do anything that would hinder your treatment," Nina said. "Make a list of your vitamins, minerals and anything else you are doing."

She learned about clinical trials from her oncologists, and her case was discussed during a routine conference between physicians at the Orlando clinic and doctors at the M.D. Anderson Cancer Center in Houston. She sought additional opinions from oncologists at Sloan-Kettering and Mt. Sinai hospitals in New York and the Moffit Cancer Center in Tampa. Nina discovered that Dr. Carmel Cohen at Mt. Sinai had more positive results with two additional treatments beyond the six normally prescribed chemotherapy treatments. After sharing this information, she was able to have the treatments at M.D. Anderson.

Throughout her months of chemotherapy, Nina continued to work and travel, but she did so with a different attitude.

"I've always loved my work," she said. "It has always been part of who I am. Before, work demanded a lot from me and took a lot from me, but after becoming sick, I started to use work rather than work using me. I used it as a divergence, but if I didn't feel like working, I didn't. And now I can put my work down at the drop of a hat. When 6 p.m. comes, I put it away and don't think about it. I find I enjoy it much more, and I'm as successful as I was before but much happier. The cancer was a wake-up call to me to the importance of family and friends and, as much of a cliché as it is, to live every moment."

It has been more than a year since Nina's surgery and more than six months since her last chemotherapy session. She's in remission and back to balancing life as a full-time mother and full-time producer. In addition to Dragon Tales, she is the executive producer of a new computer-generated preschool series called Tiny Planets, which is being co-produced by Sesame Workshop and PeppersGhost in London. Her daughters remain her No. 1 priority, and she is overjoyed to be involved with their activities. Lauren is graduating this month from Dr. Phillips High School, and Diana is completing eighth grade at Holy Family Catholic School.

With regular checkups and blood tests, cancer will always be part of her life, but Nina plans to turn her experience into something positive.

"I have met women who are battling cancer, and I am trying to be a supportive voice," she said. "I tell them 'No matter what the statistics say, somebody has to be in that small percentage, and why couldn't that be you?' Miracles happen everyday - things we can't explain - and you have to believe that it can happen, take charge, and have faith."

Nina and Pam wanted to share their stories for several important reasons: to educate women about the symptoms of ovarian cancer and the need to listen to their bodies and to insist on medical tests when things "don't feel right"; to emphasize the importance of obtaining research dollars that have been key to breakthroughs in other forms of cancer; and to inspire cancer patients and their families by showing what love and faith can accomplish.

By Gregory D. Pawelski, husband

Introduction:
This is an account of my wife's treatment for recurring ovarian cancer. Her cancer treatment varied tremendously depending on which hospital she attended and the type of treatments given at our local hospital were responsible for her final tumor recurrences and her depressed quality of life in her last years.

When she first got ovarian cancer in 1972, it was treated in San Diego, post-operatively with Chlorambucil. This is one of the slowest acting and least toxic of the oral drugs, which allows the immune system to regenerate during the process. The cancer recurred in 1996 on her diaphragm and was removed at the Fox Chase Cancer Center.

It is commonplace to give the same treatment to a recurrence as was given for the original tumor(s). However, our hometown hospital in Pennsylvania gave her a 'hard and fast' drug combination of Taxol and Carboplatin. This suppresses the immune system, which can allow tumors to grow and can weaken the blood-brain barrier, potentially inviting cancer cells into the central nervous system.

Sure enough, the cancer turned up in her cerebellum in 1998, and was removed at the Hershey Medical Center. Our local home town hospital then treated her with Whole Brain Radiation. Literature suggests that this can result in permanent side effects such as dementia and memory loss in 90% of patients over 60. My wife was 66. Hershey suggested treatment with focal radiation to the local tumor bed. Scans to check for a possible spinal tumor were also suggested but never fully carried out.

In 1999, three tumors were found on her spine and were eradicated. In the end, my wife died of the effects of Taxol and Carboplatin, which may have caused the cerebellum tumors, and the terrible effects of Whole Brain Radiation, which further scans revealed had caused extensive damage to her brain.

Ann's Medical History:
In 1972, my wife had been diagnosed with ovarian cancer, when she presented with a left DVT (deep vein thrombosis) and pulmonary embolism at a hospital in San Diego, CA. DVT is not uncommon in patients with ovarian cancer (it may be a presenting sign). Workup which was triggered by this presentation revealed that she did have an ovarian carcinoma for which she was cured with total abdominal hysterectomy and Chlorambucil (Leukeren) treatment. This postoperative chemotherapy drug was among the slowest acting and least toxic of the alkylating agents (well tolerated oral-dose drugs). By giving chemotherapy more often, at lower doses, it can prevent the regrowth of blood vessels that feed tumors. Depression of the immune system is slow and reversible, allowing it to regenerate and contribute to healing. A malfunctioning immune system can fail to stop the growth of cancer cells. When caught at this earliest stage, ovarian cancer has a good prognosis. At Stage I, ovarian cancer has a five-year survival rate of around 93%. She went twenty-four years before experiencing any recurrent ovarian cancer.

During the early 90's in Reading, Pa., she underwent a laparotomy (a surgical procedure which involves opening the abdominal cavity for examination) as a followup and this did not reveal any evidence of recurrent carcinoma. This is supposed to be the most certain way of diagnosing ovarian cancer and assessing the extent of cancer spread (metastasis). However, negative second-look patients have a 50% chance of disease recurrence anyway. For the most part, her group of oncologists relied almost entirely on the CA 125 tumor marker (a blood test done to assess the amount of an antibody that recognizes an antigen in ovarian tumor cells). The rate of "false positives" makes it inadequate for use "by itself" for screening of high-risk patients. It should be supplemented with transvaginal ultrasonography and a rectovaginal pelvic exam all done at the same time.

Metastatic Recurrence and Treatment:
It was our family doctor that found her first metastatic recurrence to her diaphragm in 1996 (not the medical oncologists at our local home town hospital). She was having dry coughing spells at first but then she began having a mucus discharge, which eventually was bloody. A chest xray and Cat Scan had shown a lesion inside her diaphragm. That recurrent ovarian cancer was surgically excised at Fox Chase Cancer Center. It was a metastatic transdiaphragmatic tumor from the original ovarian cancer (1972), with attachment to the lung and other midline structures of the chest. Parts of those structures were surgically resected (the diaphragm is a common site for ovarian metastatic recurrence).

The thoracic surgical oncologist left us with the knowledge that a second place an ovarian metastasis possibly could occur maybe the Central Nervous System (CNS) like the brain and/or the spine. It is very rare for ovarian cancer cells to metastisize to the CNS. In fact, up until 1994 there have been only 67 well documented cases in medical literature. A multi-institutional study of 4027 ovarian cancer patients over 30 years identified only 32 cases while an autopsy study of ovarian cancer reported an incidence of 0.9%. The surgeon at Fox Chase did not feel that further treatment with chemotherapy was indicated.

However, the ideas of our local home town Medical Oncologists were different from the Thoracic Surgical Oncologist who excised the tumor from her diaphragm. My wife received postoperative chemotherapy by these medical oncologists, seven months after having that metastatic tumor surgically excised. She did not have any cancer tumor markers indicate any cancer within her system. Some tumors send out microscopic outposts while most do not. However, medical oncologists cannot tell which ones do, so they want to give chemotherapy in nearly every case. The type of chemotherapy she received was the hit fast, hit hard type combination chemotherapy of Taxol with Carboplatin (second-line chemotherapy). It is usually given in big doses, with breaks of several weeks between doses to let the body try to recover (or else it can kill a patient).

Patients who develop recurrent ovarian cancer more than 6 months after first-line chemotherapy (in my wife's case, 24 years), can experience another remission following treatment with the identical first-line chemotherapy that was previously used (in her case, Chlorambucil). It has not been shown that platinum-based combination therapy is superior to single agent alkylator therapy. No substantial benefit has been found in giving ovarian cancer patients second-line chemotherapy. Clinicians have found that the toxic effects of this treatment can cause a lower quality of life for these patients. Plus, the late stage of "recurrent ovarian cancer" makes the combination chemotherapy of Taxol & Carboplatin drug resistent to cancer cells and suppresses the immune system, making it possible new tumors to grow because the patient has been rendered unable to resist them.

In recent years the incidence of central nervous system (CNS) metastasis has increased. Unfortunately, some chemotherapeutic agents can weaken the blood-brain barrier (BBB) transiently and allow CNS seeding. Taxol & Carboplatin are two of the drugs that violate the blood-brain barrier (dose dependent). In essence, it breaks down, damages the blood-brain barrier (BBB) to invite microscopic cancer cells into the CNS. A NCI observational study in 1995 reported experience in their clinic where recurrent systemic disease occurred in all patients for which they received dose intense paclitaxel (Taxol) therapy. Brain metastasis was the only site of disease recurrence, presenting with headache, dizziness, unsteady gait, nausea and vomiting.

It was our family doctor that found her second metastatic recurrence to her cerebellum in 1998 (not the medical oncologists at our local home town hospital). She was presenting with headache, dizziness, unsteady gait, nausea and vomiting. A large (3.5cm) solitary cerebellar brain tumor was found via enchanced Cat Scan (later confirmed by an enhanced MRI). The tumor was excised from her brain by a Neurosurgeon at Hershey Medical Center. Histologic features were consistent with metastatic papillary adenocarcinoma with extensive necrosis from the ovary.

The Neurosurgeon stated that he was 99% successful and felt that she should go back to our local home town hospital and receive focal radiation to the local tumor bed (which is 2cm beyond the periphery of the excised tumor site). The treatment protocol recommended for brain metastases of large solitary tumors exceeding 2cm in diameter is surgical resection followed by 5 fractions of local radiation to the tumor bed. At the same time, she should receive an MRI of the spine because of suspicions of either another tumor, on her spine or a herniated disc, causing her leg problems. However, the ideas of our local home town Radiation Oncologist were different from the Neurosurgeon who excised the tumor from her brain. The Radiation Oncologist took it upon himself to give my wife 5 fractions of focal radiation to the local tumor bed, plus 20 fractions of Whole Brain Radiation over a 35 day period. The risk of neurotoxicity from Whole Brain Radiation is not insignificant and this approach is not indicated in all patients with a solitary brain metastases, particularly when platinum drugs lower the tolerance of the CNS to radiation.

Literature of the early and mid-80's on morbidity of Whole Brain Radiation, is flooded with papers reporting long-term side effects, such as dementia, memory loss, radiation induced necrosis, leukoencephalopathy, in up to 50% of two year survivors. Whole Brain Radiation Therapy has been recognized to cause considerable permanent side effects in patients over 60 years of age. The side effects from WBR Therapy affect up to 90% of patients in this age group. My wife was 66 years of age while receiving Whole Brain Radiation Therapy.

During radiation treatment, my wife received an Unenhanced MRI to the spine that showed a 1cm lesion. Instead of performing an Enhanced MRI to the spine or a Triple Phase Bone Scan to further evaluate, our local home town hospital performed a Regular Bone Scan that showed normal bone imaging. However, a Regular Bone Scan cannot distinguish what a lesion represents and cannot differentiate between a tumor, an infection or a fracture (a Triple Phase Bone Scan may occasionally be helpful in determining benign from malignant lesions). Enhanced (contrast) agents increase the sensitivity, conspicuity and accuracy of an exam. The agent most commonly used is Gadolinium. The proper medical protocol for all Brain and Spinal MRI's for metastatic diseases is Enhanced with contrast (today, it is the Pet Scan). An Enhanced MRI was not performed and the Radiation Oncologist told us the lesion was nothing and not to worry about it. He also ignored my complaints about her having seizures during radiation therapy.

Nine months later, my wife was admitted to our local home town hospital during the Memorial Day Weekend of 1999, for a week of testing and evaluation for unexplained falls and light-headiness. After two weeks of failing to find out what was wrong with her, I took her by ambulance to Hershey Medical Center for proper medical treatment. At Hershey Medical Center, we found out by a medical onocologist and a neurologist that she had Leptomeningeal Carcinomatous (remember the undiagnose tumor of nine months prior, not further evaluated?). An Enhanced MRI showed now three (3) metastatic tumors on her spine. Spinal metastases can grow into adjacent structures, such as into the meninges from the spine. The largest of these tumors grew into the meninges on the spine into the spinal fluid, hence Leptomeningeal Carcinomatous. This was confirmed by a spinal tap.

With the damage already done to her by our local home town hospital, the doctors at Hershey Medical (in order to save her life or at least give her some time) had to administer Intrathecal Methotrexate along with systemic radiation to the spine (Admitted June 19,1999). When both therapies are performed at the same time it doubles the theraputic dosages of each therapy (increasing the neuro-toxic effects on the brain). However, the cancer cells were eradicated completely from her central nervous system by this protocol. Ever since the second spinal tap at Hershey (when methotrexate was already being administered), all of her spinal taps were negative for 10 consecutive times up until January 14, 2000. A Whole Body Bone Scan (November 3, 1999) indicated that the skeletal system demonstrated normal uptake and an Enhanced Brain MRI (November 3, 1999) showed no new areas of abnormal enhancement.

Adverse Side Effects of Treatments:
My first experience with the side effects of combination chemotherapy and whole brain radiation was when she was at Hershey Medical Center in 1999. The doctors showed me the Enhanced Brain MRI from her previous year's cerebellum excision and the one done in 1999. The scans showed the progressive deteriation of her white matter (white matter disease). Late delayed effects, occuring several months to many years later, are classified into diffuse white-matter injury, radiation-induced arteriopathy & stroke, and late delayed Radiation Necrosis. These reactions are due to changes in the white matter and death of brain tissue caused by radiation-damaged blood vessels. This clinical syndrome generally occurs 6 months to 2 years after radiation therapy. Symptoms include decreased intellect, memory impairment, confusion, personality changes and alteration of the normal function of the area irradiated (all symptoms my wife had over the past year).

Radiation Necrosis can be fatal! It causes pathological changes that impair vascular integrity. Delayed radiation injuries result in increased tissue pressure from edema, vascular injury leading to infarction (stroke), damage to endothelial cells and fibrinoid necrosis of small arteries and arterioles. My wife suffered a stroke to the left basal ganlia area of the brain in January 2000, confirmed by an enhanced MRI. My wife had developed necrotizing leukoencephalopathy (a form of diffuse white matter injury that can follow combination chemotherapy), confirmed by an enhanced MRI in July of 1998 at Hershey. The white matter is the covering of the nerves within the brain. Its function is to speed up the passage of impulses along the nerves. Necrosis is simply a cell dying, all of its coordinated activities going wrong and things shut down. If a cell gets too much heat or is poisoned by a toxic substance or exposed to chemicals that damage its proteins and membraines or radiation that breaks its DNA molecules, that cell can just stop functioning.

An EEG showed generalized diffuse slowing that was significant with global encephalopathy. It is most commonly seen in toxic metabolic and degenerative conditions. There appeared to be a real amount of focal right sided slowing which would indicate cortical dysfunction on that side. Her MRI's showed the ventricles overall were prominent and there was widening of the sulci consistent with cerebral atrophy (wasting away of brain cells and tissues). There was diffuse, abnormal signal intensity within the periventricular white matter, consistent with post radiation changes. The signal abnormality within the white matter appeared slightly increased compared to her prior studies. A Pet Scan showed globally decreased radiotracer uptake within the brain, bilaterally, consistent with involutional change and prior radiation therapy. Because of the previous chemo-radiation treatments, a recurrence of the cerebral metastasis was very likely to happen in the future. Some long-term effects can include development of secondary maligancies (the risk is 16 times greater). Resistance to standard chemotherapy regimens of Carboplatin with Taxol ultimately develops in nearly all adenocarcinoma cancer patients (mainly because of the late stages of the cancer). Recurrent ovarian cancer being such a late stage cancer, can be resistant to the combination chemotherapy of Taxol/Carboplatin. It can actually spread the cancerous cells rather than the cancer itself spreading. Since both radiation and chemotherapy suppress the immune system, it is possible that new tumors are allowed to grow because the patient has been rendered unable to resist them. A person who is cured of cancer by these drastic means may find himself struggling with a new, drug-induced tumor a few years later. A malfunctioning immune system can fail to stop the growth of cancer cells. Recurrence of the cerebral metastasis was observed via an Enhanced MRI of May 2000 at Hershey Medical Center and a Pet Scan of August 2000 at the University of Pennsylvania. Four, mm-sized metastatic tumors were found in and around the previously resected cerebeller tumor and because of my wife's weakened condition, Gamma-Knife would be the only best medical protocol. She received Gamma-Knife treatment at University of Maryland Medical Center on September 12, 2000. During the whole time of her admission at the hospital, the doctors kept referring to her continued diffuse white-matter injury (brain necrosis), as if she may be too far advanced in that injury to survive much longer. She died at home on Thursday, September 21, 2000 at the age of 68 from Cardio-Pulmonary Failure. Minutes before she expired, her temperature was normal, her blood pressure was normal but her pulse was 150 (tachycardia). Her heart was racing to keep up with the lack of brain function and finally quit. The white matter disease that my wife experienced and caused her death was primarily a result of Whole Brain Radiation and secondary a result of Combination Chemotherapy of Taxol & Carboplatin (Methotrexate was icing on the cake). The Combination Chemotherapy of Taxol & Carboplatin caused microscopic ovarian cancer cells to seed inside the CNS to form a tumor on the cerebellum and tumors on the spinal cord, with concomitant necrotizing leukoencephalopathy. Carboplatin lowered the tolerance of her Central Nervous System to any radiation treatment.The Whole Brain Radiation resulted in the death of tumor cells and associated reaction in surrounding normal brain. Such reactions tend to occur more frequently in larger metastatic lesions. Late delayed Radiation Necrosis (also known as Radiation Encephalopathy) is often irreversible and progressive, leading to severe disability or death (all symptoms my wife experienced).

Cancer Treatments as Killers:
Ann's life was greatly shortened and neurologically deteriorated by the chemo and radiation treatment received at our local home town hospital. Patients who develop recurrent ovarian cancer more than 6 months after first-line chemotherapy can experience another remission following treatment with the identical first-line chemotherapy that was previously used. Aggressive treatment, like surgical excision of tumor and focal radiation to the local tumor bed, in patients with limited or no systemic disease can yield long-term survival. In such patients, delayed deleterious side effects of whole brain radiation therapy are particularly tragic and there is no survival benefit or prolonged independence. The patient cannot experience the benefical improvement in quality of life.

If more people researched how and why their loved-one died after being treated by orthodox cancer therapies then I believe there would be a movement to have more effective and less toxic treatments available. Ideally, we would conduct such research before the treatments were administered but we usually don't have the luxury of time to learn what the oncologists are not telling us when it matters most. It is scary when we try to give oncologists the benefits of doing what needs to be done but we have to learn to ask more questions and seek more answers.

It seems the medical profession doesn't want to hear about the side effects of treatment for gynological cancer and keeps referring to the lives of women loss this way as "rare". If it was their lives, they might not call it "rare". Some people would have you believe that because "their" bodies didn't give out after receiving chemotherapy or radiation that these treatments are "o.k.". Cancer patients who die, having undergone toxic treatments which sap their energy and harm their immune systems are heralded as brave souls. Sometimes it is good for the soul to hear what others in similar circumstances have to say.

The quality of life must be considered as a major decision point in cancer care. That element, so long missing in most clinics, hopefully will be brought to the fore expecially in the many cancer clinical trials. I hope that quality of life soon becomes a major outcome issue for all involved in the treatment of patients with cancer. I will continue to be an advocate for my loved ones and help others in their own journeys with cancer.

Because of the experience with my wife, I spent three years on cancer research. I've written to over 3,000 medical professionals and institutions all over the United States and across the globe. I have studied over 500 medical web sites (like MedLine, Pub Med, Oncololink, Johns-Hopkins, NCI, NIH, etc.). I have all of my wife's medical records to relay first hand experience. I even retained a medical expert (a retired surgeon of 25 years at our local home town hospital) to concur my findings. I had to learn the how and why, what happened to my wife.

There are three main points that I've found out in my three years of cancer research.

• An understanding of the doctors involved with my wife's medical care at our local home town hospital.
• An understanding of the lack of uniformed cancer care being practiced here in the United States.
• Cancer patients frequently die from their cancer treatments and not from the cancer itself.

WOW! I have written my cancer story in such detail on the web that I am not sure exactly where or how to start a shorter version :~) First of all I would like to say that I have read the personal stories on this site and my heart, prayers, and hugs go out to all of you. What a harsh battle we are in and you are all so very brave! As I read each story tears filled my eyes as I remembered MANY of the feelings you so openly shared. I will keep this short and just add the link where you can view the entire story if you would like to read it.

I was first dx with OVCA in 1995 when I was 21-years-old. I was a young stepmother of two boys and had just been married.

As I think about it now, I really believe I had symptoms for years before this diagnosis. I wish then that I would have known what to look for. Even at the age of 16 I was treated for gastrointestinal problems. At the age of 18, I can remember being treated for a urinary infection (due to the feeling of frequent urination). And even at 21, I reported pains in my abdomen that were constantly discarded as menstrual cramps that come with age. Knowing what I do now, I still don't understand why doctors didn't recognize these symptoms as something much more serious. A pap smear in December of 1994 showed everything was fine, but by the third week in January I was having such severe pains that I couldn't even stand up to wash dishes. On January 27, I was getting ready for my wedding when I fell to the floor and my soon to be husband had to carry me to the couch. I promised him that I would make another appointment with the Gynecologist the following week, and as soon as that week came around that is exactly what I did. The sonogram that the doctor did showed a tumor the size of a cantaloupe (as he described it).

My CA 125 had jumped but he assured me that that can happen for many reasons and only surgery would tell him if the tumor was indeed cancerous. I remember going to the grocery store after that visit and just standing in the produce section holding a cantaloupe for what seemed to feel like forever.

The surgery went well and it was confirmed that I had a LMP tumor. They removed one ovary and tube and felt confident he had removed all of the cancer cells that had gone over to the other ovary. I eventually recovered from the surgery and I didn't have to have any chemo so I thought the nightmare was over. Three months later I found out that I was wrong -- it had really just begun. Since then, I have had four surgeries and 18 months of chemotherapy all together. I have been on Taxol/Carbo twice, and now on Topotecan.

I have been to four different hospitals with the final one being Johns Hopkins. It has got to be the best hospital around. Before I went there I was losing all hope in beating this disease. Since the switch though, I have regained my faith and feel they will eventually come up with something to keep this monster at bay or at least find an early detection device. Until then, I will just keep giving it all I can! After going to Hopkins, I found out that I have Stage IV LMPSC. I also found out that this type of cancer accounts for only 7% of all ovarian cancers. I am currently on a chemo break and enjoying every minute of it!!! I had a CT scan done the end of January that showed my cancer is staying stable with no chemotherapy. It is the best news I have had all year! My doctor and I have decided to do repeat scans every eight weeks and I am actually going to go back to work part time. I am hoping this year will be the start of a happier and healthier life. Please forgive me for the length of this. I am just so used to writing about this in a longer form. If you would like to view my story in detail you can do so here.

Tabitha [email protected]

Whitby Woman Joins International Medical Review Group

Mar 14, 2003

WHITBY - One of the most respected medical review organizations in the world, the Cochrane Collaboration, has invited and accepted local ovarian cancer activist Sandi Pniauskas to be one of its reviewers.

Specifically, Mrs. Pniauskas will become part of the Cochrane Collaboration's Gynecologic Cancer Collaboration Review Group. The United Kingdom-based Cochrane organization reviews all presentations on a variety of diseases from scientists and physicians around the world. As an ovarian cancer survivor, Mrs. Pniauskas can't wait to share what she's learned since being diagnosed with the disease three-and-a-half years ago.

"No other ovarian cancer survivor is a member of Cochrane," she says, still a bit surprised at the honour. "Someone I knew who was already involved with the organization was aware they were looking for consumer reviews and asked me if I would consider participating."

The Cochrane Collaboration is an international, non-profit organization intended to help people make informed decisions about health care by reviewing and promoting available evidence on the effects of interventions and treatments. It is a charity registered in the United Kingdom.

A parallel goal of the collaboration is to affect future research in health by identifying where research has been done, and where more is needed. According to the organization's Web site, consumer feedback is a key strategy in making Cochrane reviews more relevant, accessible, and able to improve health care for the people who need it.

"I'm excited about it because it involves the consumer, the lay person," says Mrs. Pniauskas. "Being asked for input in the process is extraordinary for the ovarian cancer population because we're finally on the road to including patients and their health care. It's a process of inclusion."

In the meantime, the busy advocate will teach classes about ovarian cancer at Durham College March 29 and May 3. She runs a peer support group for area women with gynecological cancers, while lending her considerable talents to the gynecologic cancer program at Princess Margaret Hospital.

Her studies about ovarian cancer have brought her to the conclusion that there is a link between ovarian, breast and colon cancers. "Awareness is all we have right now. Research is desperately needed to change this."

Visit www.cochrane.org for more information.

https://www.durhamregion.com/dr/regions/whitby/story/943717p-1128519c.html

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Submission to the Health Care Commission of Canada

Sandi Pniauskas* Pamela J. West Ovarian Cancer RN, M.Sc., CON(C) Patient and Advocate Acute Care Nurse Practitioner Oncology May 30, 2002

Introduction. Thank you for allowing me this opportunity to present my views regarding the ongoing debates concerning our Health Care system in Canada. The issues are overwhelming. There are many needs and enormous disparities. I will tell you that I have reviewed all the Submissions on your website that directly and indirectly affect Ovarian Cancer women. I have also communicated with Ovarian Cancer women across the Nation - from coast to coast. I consider it a privilege and an honour to be the voice of many of these women and to be able to express their views. I will tell you about dignity and care and respect and the human side of this woman's cancer. But, I also want to highlight about other realities as well. This is not for the faint of heart. I need to preface my remarks by saying that Ovarian Cancer women in this province, and in this country, value and appreciate the dedication and commitment of medical professionals who go above and beyond their duties in practicing quality patient care: not only quality care, but outstanding support of ovarian cancer women and their families as they face and endure daily obstacles. I witnessed this only this past Tuesday when visiting the Kingston Cancer Centre. Pam West, who is with me here today, exemplifies a real life example of true progression between patient and nursing. The support which Pam has provided to me and in turn our Ovarian Cancer community is not to be found elsewhere in the whole of this country. She recognized the need to educate and communicate. She allowed me the opportunity to teach nurses about ovarian cancer. We just decided - okay - let's do it and we did and we continue to do so. It has progressed from there. It does not have to be complicated. No budget, no meetings, no bureaucracy Please keep this in mind as you hear what I am about to say, as I do have some criticisms. Let me present a patient's perspective on what is not working and propose some solutions that can be put in place today, without draining our existing limited resources.

Background. In order to understand what I am about to discuss, it is important that you appreciate the significance of a cancer women fear the most - Ovarian Cancer. Being diagnosed with ovarian cancer gives the connotation that this is a disease which comes with an automatic death sentence. This misconception permeates the minds of both only the public and health professionals. It does not have to be that way. In Canada in 2002, ovarian cancer has the highest mortality rate of all gynecologic cancers with an estimated annual mortality rate of 62% of all diagnosed cases. (1) To contrast this and to use the same criteria, the annual mortality rate of women's breast cancer is 26%. Colorectal cancer (a disease of both men and women) has a 37% annual death rate among its diagnosed. There are no screening tests, such as a PSA test in prostate cancer, colonoscopy in colorectal cancer or mammography in breast cancer. Seventy-five per cent of ovarian cancers are diagnosed in advanced stages resulting in a 5-year survival rate of approximately 25%. Approximately 78% of ovarian cancer women live at least one (1) year post diagnosis and the majority will die within two and a half (2½) years.(3) There have been no significant improved survival rates in years and decades.(14) The fact remains that ovarian cancer has a high rate of recurrence after surgery and other treatment modalities. There is no known cause of 90% of ovarian cancers. Five to ten per cent of women are pre-disposed due to genetic/familial links between ovarian/breast and ovarian/colorectal cancers. Ovarian cancer does not necessarily exist in isolation.

As an example, if a woman is predisposed by carrying the HNPCC gene, her lifetime risk of colorectal cancer is 80%. A secondary cancer is also of grave concern in that it relates to the treatment of a first cancer (ie: leukemia as a direct result of chemotherapy and/or radiation therapy). There is also no established relationship between diet and smoking and ovarian cancers.(2) Often considered an "older" woman's disease, sadly (and fortunately uncommon), this disease may strike your young daughters. We, ovarian cancer patients, do not fit the mold of today's mantra of Healthy Lifestyle and Prevention. Sadly, these lifestyle and health issues have no relationship with Ovarian Cancer issues. In Canada, there is simply not enough attention paid to Ovarian Cancer. Barriers 1) Access to Specialized Care Ovarian Cancer women in this country deserve equal and fair access to services. Many women across this country use the term "luck" when speaking about their care. This "luck" refers to waiting times for surgery, waiting times in emergency care, waiting times for treatments and waiting times for doctors' appointments. All Canadian women must have access to gynecologic oncologists.

International clinical evidence supports specialist care right from the onset of a suspicion of ovarian cancer. (4,5,6) Specific guidelines regarding the proper surgical procedures exist and need to be followed. In this country these guidelines are not being met (7,8,9) Surgery is one of the most important keys to ovarian cancer survival. In Canada, we are ignoring this evidenced-based research. The practical implementation is not happening. In fact, gynecologist/obstetricians still practice ovarian cancer surgery, when it should be left to gynecologic oncologists only. In doing this, I am reminded of the medical profession's code of ethics of "Do the least harm". Inadequate resources(10), including human resources, outdated diagnostic equipment, lack of knowledge and education: these key issues have been ignored. Allow me to share several experiences of ovarian cancer women, told to me over the past week. One woman stated that it would always be a thought in her mind that if she had proper surgical staging, maybe her tumour would not have ruptured. In another incident, a gynecologist's secretary told a woman that a specific doctor would "take very good care of her," meaning she did not need to see a gynecologic oncologist. It seemed like they were "selling/advertising" their services, which is impossible to understand. In addition, in both of these cases, gynecologic oncologists were available nearby, and waiting times were not an issue. In a third case, a woman recently went out of the country for a second opinion because in her province, there is no one to provide a second opinion.

So, here we stand. Ignorance of the disease and ignorance of adequate health care interventions.

Treatment. Ovarian Cancer does not care where you live, and yet, from province to province there are gross disparities in the delivery of care and in the availability of chemotherapy drugs. Drug formularies or drug coverage (or lack of) prescription medication varies from province to province. A case in point relates to Gleevec™ (STI 571). While Gleevec™ clinical trials are accruing patients in Ontario, British Columbia has lifted Gleevec™ (STI 571) from it drug formulary.

Another example would be Taxol in the recent past. Should patients diagnosed with ovarian cancer move to a province that will care for them in the fairest way? Community-based cancer centres are popping up all over Ontario without the foresight and/or ability to include/hire the appropriate staffing.

Canadians have expressed their desire to receive access to care closer to home but at what expense? If the ovarian cancer patient fully understood that traveling to see a specialist could impact on her survival, there would be no decision. This should be obvious from recent examples of patients willing to travel outside of the country for treatment. In remote communities, this may be understandable. However, are we at the point in our Health Care system where any care is deemed better than no care? Women are sent home from hospital to die without the proper support mechanisms. Ovarian cancer women suffer excruciating pain because health care workers are not available. Women experience nausea because they have no private health care plan and cannot afford the costly anti-nausea medications. There is financial distress but families are too proud to talk about it; preferring to suffer in silence. I could tell you of a 'middle-class' family who could not afford the bus fare to send their children to the hospital to visit their dying Mom. Have we considered single Moms and elderly women who live on their own? Cancer pain at the close of life should not be a medical issue in 2002, but it exists because of an ineffective system that does not recognize the wider problem. We have choices and we need to make them right. 3) Quality of Care Quality of care not only surrounds the previously alluded to 'specialist' care but also includes diagnosis, treatment, counseling and follow-up care for a cancer which never goes away. Palliative care is a reality in ovarian cancer. We have leapt into a home care system with little resources and poor planning. We need to pay more attention to these realities. 4) Respect of Patient - Education - Awareness - Patients' Bill of Rights/Dispute Mechanism It is time for a new patient bill of rights, but not in the prevailing or traditional manner. I have had personal experience with a "Patient Advocate" and realized later that in fact this 'Patient Advocate' was more of a Hospital or Doctor Advocate. A Patients' Bill of Rights means one thing to an institution but something entirely different to a patient. There needs to be a forum or individual ombudsman for support when things go wrong and a protective mechanism in place without having to revert to legal counsel. Communication is key and, in fact, solves most issues. Who speaks for the patient? Patients are afraid to contact doctors because of physicians' time limitations and a fear that this may jeopardize future care. Sometimes, this is too late. It is incumbent upon Canadians, as a compassionate Nation, to stand by those who are in need and who are unable to advocate for themselves. Although this may represent a minority of cases, one case is one too many. Specifically ovarian cancer patients need education and resources from diagnosis to death, including not only the physical but the emotional support. Today when patients are diagnosed with ovarian cancer, many leave their doctor's office without any resources. They go home stunned, shocked and in fact totally emotionally isolated. We need to provide both the public and medical personnel with accurate information about ovarian cancer. Awareness will achieve many things. Most importantly, it will result in the detection of ovarian cancer in earlier stages when survival is much improved and women can return to their place in society as healthy and fully contributing members. No one wants this more than the patient herself. Ovarian Cancer patients are not abusers of our health care system: they just want their fair share of resources and supports. Overall, I am advocating that: 1) All women suspected of ovarian cancer will be referred to a gynecologic oncologist at onset of a suspicion of malignancy (exception noted - see #4) 2) All women will have initial surgery performed by a gynecologic oncologist (exception noted - see #4) 3) All women will be educated in an unbiased manner as to the survival advantages of specialized care; 4) In remote communities where a gynecologic oncologist is not available (and the patient does not wish to commute outside her community), a consultation between all affected parties will take place 5) All women at the time of initial will be given appropriate and timely educational material covering the basic facts of ovarian cancer; 6) A nationwide Ovarian Cancer education programme will be established in all communities - for both the public and health care professionals 7) A nationwide Ovarian Cancer Survivor panel will be established to ensure that a patient's opinion/participation is sought in any discussion or proposal (research or community/hospital based program).(12)

Implementation. We acknowledge with evidenced-based medicine that ovarian cancer surgery and specialized care is required. The allocation of resources stretches far beyond me. However, if you educate family doctors regarding ovarian cancer then the mechanism for direct referral is already in place. You can circumvent the "middle man" in this case, gynecologic obstetricians, thereby relieving their workload. Time is money. Time is savings.

There need not be more studies. There needs to be action. Education can start today. It can be done across this country with little cost. Seminars, community activities, communication through nursing associations and designated awareness campaigns: all are easy ways to share the message.

Conclusions. Our universal health care philosophy is sound but needs to be updated to reflect the diversity of current needs and today's environment. We have to stop thinking about why things can't be done but rather what can be done. We need to honour the intellectual capabilities of patients and we need to operate in a manner of mutual respect and in a time frame conducive to doing so. We have internationally recognized researchers whose talents are wasted.(11,13) We need to find solutions to ovarian cancer mortality rates and we have people with a great desire and ability to do so. We need to scrap the politics because this truly is THE very one thing that stands in the way of progress. Lastly, we need to put a human face to our health care system.

We need to find the will to do this. I truly believe the will exists on an individual basis but, collectively, we are in a mess. Communication + Will = Success + Benefits

Thank you on behalf of Ovarian Cancer women in Canada

Sandi Pniauskas
117 Glen Hill Drive
Whitby, Ontario, Canada L1N 6Z8

(1) NCI Canadian Cancer Statistics 2002 Current Incidence and Mortality Estimated New Cases and Deaths for Cancer Sites by Gender, Canada, 2002

(2) American Cancer Society 2001 e.5 Cancer Medicine

(3) Excerpts: Management of Advanced-Stage Ovarian Cancer; Prescrire Int Feb 2002, Survival in familial, BRCA 1-associated, and BRCA-2-associated epithelial ovarian cancer; United Kingdom Coordinating Committee for Cancer Research, Familial Ovarian Cancer Study Group Cancer Res Feb 1999, Prognostic factors of stage IV epithelial ovarian cancer: a multicenter retrospective study; Gynecol Oncol 2001, Department of Obstetrics and Gynecology, Tohoku University School of Medicine, Sendai, Japan, Long-term follow-up of the Stockholm screening study on ovarian cancer; Gynecology Oncol Dec 2000; Gynecological Department, Radiumhemmet, Stockholm, Sweden

(4) The Benefits of comprehensive surgical staging in the management of early-stage epithelial ovarian carcinoma, Gynecol Oncol May 2002 Le T, Adolph A; Krepart GV; Lotocki R; Heywood MS, Division of Gynecologic Oncology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada

(5) Why American Women are not receiving state-of-the-art gynecologic cancer care Gershenson DM, Department of Gynecologic Oncology, The University of Texas, M.D. Anderson Cancer Center, Houston, Texas, USA Nov-Dec 2001

(6) Surgical Management of Ovarian Cancer, Mutch DG, Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Washington University School of Medicine, St Louis, MO, USA Feb 2002 (excerpt)

(7) Surgical standards in the management of ovarian cancer, Robert E. Bristow, MD Johns Hopkins Hospital and Medical Institutions, Baltimore, Maryland, USA

(8) Surgical Management of Ovarian Cancer David G. Mutch Seminars in Oncology Feb 2002

(9) Implementation of Ovarian Cancer Surgery Guidelines Elit,L, Rosen,B, Anderson G, Thircuchelvan D, Department of Obstetrics and Gynaecology, McMaster University, Department of Obstetrics and gyneaecology, University of Toronto, Health Administration, Faculty of medicine, University of Toronto, Toronto, Research Services Unit, Public Health Science, University of Toronto, Toronto

(10) A Shortage of Medical Oncologists at the McGill University Health Centre Prompts an Aggressive Recruitment Campaign March 2002 McGill University health Centre, Montreal, Quebec

(11) First line chemotherapy in advanced ovarian cancer, Dan Grisaru Oncology Rounds from Princess Margaret Hospital, Toronto, Ontario February 2002

(12) Cancer Survivor Involvement: California Cancer Research Program, Sacramento California, USA 2002

(13) Canadian Institute for Health Research, Ottawa, Ontario - database search Funding years 1999-2003 - All Provinces/All Institutions - All Themes/All Classes/All Areas - Ovarian Cancer - total dollar amount for specified search criteria - $1,956,205

(14) Distinguished Professor Series: Is There any Progress in the Outcome of Patients Suffering from Ovarian Cancer? Treatment Strategies

UPDATE 2009

Hope with More: ‘In Their Own (Ovarian Cancer) Words’

Still today, less than 20% of ovarian cancers are diagnosed in early stages, primarily one of luck or happenstance. Ever-present are the realities that ovarian cancer is a disease most often en-shrined in significant suffering. This is our past and this is our current reality.

Reflecting on our women’s most intimate and unpublished thoughts, feelings and opinions tells, ‘In Their Own Ovarian Cancer Words’, what still has not and is not being heard. This is not the ‘cute’ side of ovarian cancer, although there are moments. Each day brings a kaleidoscope of emotions. With each passing day, the struggles of the fine line between Hope, Reality, Wishes, Expectations and Dreams remain.

We speak as one without boundaries and indeed in many respects ovarian cancer IS the silent killer. Against our will and with significant sacrifices, this ovarian cancer invariably defeats the body and the spirit. I challenge you to listen, as we have, so silently, for so long. A decade of intimate involvement with ovarian cancer women, their caregivers and communities, has most often elicited truisms that stand out. There is Trust between Survivors & Caregivers and secondly, there does not exist, in our world, an ‘ordinary’ ovarian cancer woman.

Trust between ovarian cancer Women and Caregivers is: Hope with More.

Should we choose we might learn much based on these personal conversations. These few words represent a microscopic-sampling of millions of words and thoughts - all valued - all cherished – sometimes dismissed. Sometimes too difficult to b/hear. Sometimes with a huge sigh of relief and humour.

In our communities, many moments are spent living-with-ovarian cancer, often through the eyes of others. As a tribute to our ovarian cancer women, living-with or in-spirit, these are their words to you with that special privilege of Trust and my own personal admiration… in their own words. Some are stunning. All are real.

Age: A: Ovarian cancer for xx-something ‘dummies’. L: Older than whom? I: How dare they write me off. S: I have wished it was me, not her going thru this . Though I am younger and could be stronger, the truth is I am such a coward compared to her.

Angels & Hope & Friends: B: I am alive today because of my guardian angel (an ovarian cancer survivor). B: Spent all day in emergency because I was having a lot of trouble breathing. Good news no heart attack, no stroke. R: Please visit me today as I think this is it…. Please visit me today as I think this is it….(X many) … Look after yourself and when you have time, contact me at: 1 – 800 – HEAVEN ext R … Message to R: The line has been kind of busy .... Y: Friendship therapy is something that has not been explored by the medical community, but it is important for cancer survivors. When I was on chemotherapy, I might just sleep over some days because during those days I was too sick to eat or get up. I was surprised I was enjoying not only the good companies, but also the food when other survivors came to visit me. L: …will be shutting down the computer now...we’ll see each other completely on the other side. C: I agree, let’s go, we can. (do this) C: I think I will lean heavily on philosophy as I get closer to dying. It's that or religion. There's always food! Maybe I'll just eat my way through the fear of death! S: I have to say that I am not being very gracious here and at the same time not feeling that I should apologize either. It makes me feel that I am supposed to be wishing you the best when all I really am wishing for is that you could stay.

CA125: S: I was 3x years old when I was diagnosed…. I have never had a CA 125 done to my knowledge. S: It doesn’t matter what the research on the CA125 says - it’s all we have.

Humor: J: (Dr.) said if his wife was going for (treatment) this is who he would send her to. I hope he likes his wife!!!! S: I should have read the bio first - psychiatry and 'suck it up' don't really go together. S: Thanks for living so long! (woman with 150~ + chemo/multiple surgeries TO woman with no recurrence) L: This disease may have taken my ovaries but has replaced them with a ‘set of balls’.

Husbands/Partners: D: I watched, as the verdict was read, a tsunami-like wave pass right over my wife’s head, leaving her completely stunned.

Knowledge: A: Ovarian cancer for xx-something ‘dummies’. (worth repeating) S: In order to be taken seriously, we (patients) need to understand everything about ovarian cancer. C: I decided that starvation is the easier death by far…. B: I once read that ovarian is the most complicated cancer, so I figure that I (and the rest of us) must be really special.

Impact: B: “You need a surgeon and you need one now”. I left his office naively thinking that something would be done and that we could go back to trying to have children. L: (upon my death) please thank everyone in our group...they are so special. R: (favourite quote) "Since my house burned down I now have a better view of the rising moon." F: I always wonder which (ovarian cancer friend’s) death will put me over the edge. I think I am close. Value and Sense of Worthiness: K: I feel I am nothing for what this disease is doing to my family (control)….I am not a nothing...I am really a somebody...somebody with ovarian cancer. L: Let me tell you what is on my mind without cutting me off with "You are so negative!” It is not that I am being negative, these are the facts and I am being realistic. D: (word games) I Am No Thing. I Am. Not a Thing, or a title, nor am I a summary of accomplishments. I am No Thing because I am not static, not uniform, not in a box, not a disease, not a political party. I am not a snapshot. C: (published) “Devaluing a Survivor’s Challenge”

We are: PhD’s, healthcare support professionals, lawyers, bankers, physicians, teachers, social workers, computer specialists, nurses, realtors, bankers, e-patients...…Daughters, Sisters, Mothers, Grandmothers *As matters of integrity, names have not been disclosed, albeit many have given their express permission to do so (past and present)

Judy passed away in May of 2003.

For at least 14 months I had been trying to tell my internist and ob-gyn something was wrong. I had a tender area on my right side that I would point to and say,"This is where it REALLY hurts". They would press on it and I'd say,"YES, that's It!" and each would always say he couldn't feel anything there. Even when I had the vaginal-rectal exam in December before my surgery in September, the ob-gyn said it felt tight in there, he still didn't seem concerned. I let that slide because he had me on Metamucil ( for the Indigestion!) and since I had to go to the bathroom abut 4 times when I got home, I thought that might account for the tightness. Of course, at the time, I knew nothing about ovarian symptoms. What really made me push to get to the bottom of it in early September -- to see if there truly WAS something going on -- were the following things:

1) The tender area on the right was no longer by itself; the left side had joined it. This tenderness did not hurt unless I pressed on it, or rolled over during the night. Once I became aware of them I would check during the day to see if they were still tender to the touch and they were. When I first noticed the right one, I thought it had something to do with menopause since I was 49. So I kept feeling to see if it had changed.(In June I had sort of blacked out, so I had the test (FSH?)to see if I was menopausal. That showed I was not.

2) In late April of that year, I was in the Pegasus Parade during Derby Week as part of the 15th District PTA's entry celebrating PTA's 100th birthday. We were to wear matching T-shirts and khaki pants. Since I had no khaki pants, I had to buy a pair. I was able to find a nice pair that fit perfectly in every way and even had a little extra room at the waistline, in case I needed it later ( I needed it later, but it wasn't nearly ENOUGH!!) They were size 10. By the end of August, when I tried to include these pants for a trip, they lacked at least 4" coming together at the waistline. I knew my waistline was growing over the summer, but these pants gave me a specific marker. Had I been heavier at the beginning, I might never have noticed this difference. When people would ask me to meet them for lunch during the summer, I'd say, "I probably shouldn't go; I feel I'm getting so fat." (Then I'd still go, but feel a little guilty!) I was usually telling this to my walking partner--we'd meet at 5:30 A.M. for a 3-mile walk. Sometimes I'd meet another friend for a 2-mile walk in the evenings. When I told my internist that I was walking 3-5 miles a day and still gaining, he was quick to tell me how my metabolism could change and he whipped out the sheet that we've all seen telling how much time one must spend on different activities to lose one pound. I told him I understood all that, but still felt something was wrong, because I weighed more than I did when I had my 11-pound baby. His response--"and you're not even going to have anything to show for it this time." I'm proud of myself for not backing down, despite these and other sarcastic, condescending comments. I said I still felt something was wrong. He said "well, if there is something wrong in the area you're indicating, it has to be the bladder, colon or ovaries--that's all that's there. "

Since he had told me over a year before to take Metamucil, and had put me on Pep-cid in February, I was sure it was my colon. I started to ask him about the different colon tests. That's when he got downright hateful. I felt ill-prepared to get into an argument with him about those tests, since I knew so very little, so we moved the discussion to the ovaries. My thinking was--I'll eliminate the ovaries (and probably bladder) as possibilities, learn about the colon tests, then throw my energies into getting that properly diagnosed. So we decided I'd go to my ob-gyn and see if there was a problem. Since it was about 5:00, I knew I'd get the answering service if I went home to call, so I went straight there. (Before I left the internist's office, he wrote down more directions for taking Pep-cid.) When I told the person behind the ob-gyn's desk that my internist and I thought I should be checked, she insisted it was not time for another check-up--I was checked in December and this was only September. I kept saying that I really felt I needed to be checked. The person who did ultrasounds one day a week (Wednesdays)happened to be there. Although I had never had an ultrasound, I had seen her before and she remembered me. She came over and I explained the situation to her. She said maybe we could do an ultrasound. I said,"Good, can we do it this Wednesday?" (This was late Monday, Sept 8). "Oh, no, we're full--we couldn't possibly do it then." I knew I needed to get that off my mind so I could focus on my colon, so I just keep asking nicely if I could come any time after 12:00 on Wed., no matter how late. Finally she said "well, come on in at 3:45 this Wednesday." I felt a little guilty then and said "are you sure? I know I've kind of insisted and I don't want to crowd your schedule too much ." She said "No, come on in then because we're booked till October 29." On Wed. Sept 10, when she did the US, she had trouble inserting the probe.

To sum it up, they sent me over the next night for a CT scan, with the words "suspected 11 cm. mass" written on the sheet. On Sept. 22,I had surgery and was later told I was Stage llB. In the op report, the surgeon suspected it might be Stage lll, but tests showed it was only in the two ovaries. They had also removed the omentum as well as some lymph nodes. I realize how fortunate I am and want to do everything I can to help educate others. A year after my surgery, I moved out of a 31-year marriage. For one thing, my husband was extremely critical of any volunteer work I did and I knew I needed to work on OC awareness. In general it was just a very negative atmosphere, not helped by the fact that he retired in 1991 at the age of 51. Although the last child had left home in 1996, I waited until they were all finished with their education and then I moved. They are now in Santa Barbara, Manhattan, and Thailand (Peace Corps).

For the most part, I feel great. I get blue sometimes and I miss my children. But I know they're doing what they need to do and so am I. I stay really busy. Another OC survivor and I started an ovarian and other gyn cancer group in March, Kentucky Silent No More. It is advocacy as well as support. I am also on the board of a general cancer support group, Friends for Hope.

Besides the tenderness in the area of both ovaries, the waistline increase and the indigestion, I think I had many other warning signs. I had bloating, distention, pain during intercourse, frequent urination, just about everything except bleeding, but never was an US mentioned or any special concern shown on the part of my doctors. Years before, I had an abnormal Pap and was also diagnosed with irritable bowel syndrome. (After the surgery, when I questioned the doctors on why they hadn't been able to feel especially the larger tumor, they told me it was "suppressed.")

I'd like to add in closing--LISTEN TO YOUR BODY!!! I think that's the most important advice we can pass on to others. Also, remember it IS YOUR body and that the doctor is working for you. Don't hesitate to question or even change doctors. Most women who have heard my story say that their mothers would NEVER have pursued it as I did. If you can't push for yourself, think of your daughter or granddaughter and do it for them!

I wasn't feeling well for quite a long time....I'm 49 years old and was told that I was entering into peri-menopause. My stomach had swollen to the degree that none of my pants fit me. They told me that this was normal for a woman to gain up to ten pounds in the midriff area during menopause. I had gas and bloating constantly accompanied by nausea and indigestion. They began treating me for Acid Reflex. When I tried to eat, it would be only a few bites and then I would be full. I had to urinate all the time. I could only go a small amount and then felt like I had to go again. They told me I had a bladder infection and treated me. My stomach was becoming tender, so much bigger....and the fatigue is indescribable. I thought that my hypothyroid condition was acting up, especially because of my exhaustion and that I was putting on weight. My husband Nick, daug. Carrie, and sister Terry, told me that it seemed as though I was sleeping my life away. I stopped going to work. I no longer could get a good night's rest. While in bed I could only lay in certain positions. When I tried to sleep on my back, I felt something in my stomach; something I knew didn't belong there. It caused pressure on the inside of my stomach....and pushed into my back. Just by touching my stomach, I could outline the object. It was the size of a grapefruit. I felt like I was pregnant but knew I wasn't. The medical field had me convinced that I was a hypochondriac, now I knew I wasn't. The Doctor finally agreed on July 23, 2001, that there was something there and sent me for an US. What made me angry was that it took 3 weeks for this appt. The day after she got the results, she told me it showed two large bilateral masses and was going to send me for a CS and make an appt. with a Gyn. It took another three weeks to get the CS, another three weeks for the Gyn appt. Guess what? The Gyn. canceled my appt. the day before I was to see him. Besides that, no one called with my CS results either. I was so upset by then. The waiting, the fear and anxiety were taking its toll more every day on both my husband and myself. I called crying to the nurse at my doctor's office that it was now the end of Sept. and I still hadn't seen anyone. The doctor then returned my telephone call stating, "She was amazed that I'd not seen anyone and couldn't understand how I became lost in the system". I also gave my doctor permission to talk to my husband and daug. By law they won't release any information to anyone but the patient. Well after reviewing the CS with my daug. Carrie, a nurse, started acting as my advocate. My daug. arranged to have me see a Gyn/Onc. a few days later. He ordered a CA125, which came in at 830.5. Lo and behold, I was operated on Oct. 4th. The diagnosis was Ovarian Cancer, Stage 2B, Level 1. I felt 100% better after the surgery, a little sore but better than I had felt in a very long time. The right ovarian mass weighed in at 4.4 lbs. The left weighed in at 2.5 lbs. and had moved to two other parts of my reproductive system. I don't have the correct name, but a radical hysterectomy was performed. On Oct. 25th I am starting the first of six chemo treatments. I know I may be sick but I'm determined to get started. My husband Nick and I shopped for some outdoor and indoor head coverings for me. My sister Terry, took me to scan catalogues and helped me to choose the style and hair shade of my wig. It is now ordered. Now, I'm ready. I won't be caught off guard when I do begin to lose my hair. The only thing I can't get the family to become involved in is that they all shave their heads with me and we go through this new look together. My husband told me he would but he is afraid that mine will grow back and his won't! You may laugh at me, I know my husband did, but I told my cancer...you're done for, buddy. You don't stand a chance now. With God's help I'm going to do you in. I'm going to keep up that attitude.....he doesn't stand a chance. I'm going to be the winner this time. It is important to keep up a good attitude..it is better you have a sense of humor. Myself, I have a wonderful wicked sense of humor. Just ask my poor husband. He has to live with me. Last, everyone seems to have the same story here.....we wonder what happened. We get misdiagnosed, told it is in our heads or we get lost in the system. While some, don't listen to their symptoms and live in discomfort. We ask how could it have taken so long for someone to listen to us? Please get those second, third opinions in.....Don't let them put you off. We know our bodies. They don't. It is up to us to educate the medical field, not to ignore the symptoms we are experiencing. It is vitally important to get diagnoses as early as possible. Hugs to all.......God bless and take care

February 2002: Update from Donna -- She celebrates her 50th birthday! (Shown here with grandson Joseph)



Donna was dx. with a reoccurance on Oct 1, 2002. She has an on going battle with this disease and continues to celebrate life with the arrival of her grandaughter Faith. Her husband, Daug and grandchildren are her cheering section.

I am writing to you today concerning a very special person in my life who has just started her journey into womanhood. My beautiful 15 year old daughter Sarah Megan. She was diagnosed with ovarian cancer March 7th of 2001. Needless to say Myself, my family and her doctors where shocked that a young girl could be diagnosed with this horrible disease! She had had blood in her urine a couple of times prior to her diagnosis, and her pediatrician did urine cultures and diagnosed her as having a bladder infection. This happened two consecutive times in a row! Never was any other testing done. I did notice, however, that Sarah had seemed to be gaining weight and that she seemed to complain about her closes fitting snugger lately! She had never had a period at this point either, so I was thinking as well as my mom and sister that all of these symptoms where leading up to that wonderful? moment that we all get to experience as young ladies. It was March 6th, and the school nurse called and said that Sarah was running a low-grade fever and was complaining of cramps... she too suggested that she was probably ready to start her first period. We picked her up from school and brought her home, I gave her some Tylenol® and a heating blanket for the cramps and made her some hot tea. She fell asleep and when she woke she was feeling somewhat better, but there were no signs of her period starting yet. We all went to bed that evening and around 3:00 a.m. I heard blood-curdling screams from Sarah whose room was downstairs. Needless to say, I do not even remember touching the steps as my husband and I ran to her side! She was writhing back and forth on her bed and her stomach looked extended to me, I looked at my husband and said to get the van started that this was no longer about her starting her period! Motherly intuition was telling me otherwise!

We got to the hospital and I don't recall talking to anyone at the sign-in desk I just remember the panic in the nurse's face when she saw the distress that my daughter was in! They rushed her to the sonogram room after giving her a whopping dose of morphine! I watched the woman reading the sonogram screen. She looked at my daughter and looked at the screen and repeated the process about 3 or four times...I finally said what is it? She would not say and said that the doctor would have to tell me the results, at this point I went over to the monitor where she was sitting and noticed that there were no visible organs just a black mass! I told myself that I did not know how to read this and that it was nothing, however, being that I have had four children and quite a few sonograms done I knew in my heart that this was not the case! Sarah's pediatrician came into the room and asked me to sit down. I began weeping. He said that there was a huge mass covering her ovaries and uterus and it had ruptured and was causing the pain. The nurses instructed me to go home and get anything she may need for a week stay at the hospital. I went home and just grabbed things and threw them hurriedly into a suitcase while weeping and screaming and begging to God not to take my oldest daughter and best friend away from me! It seemed that the trip to Pittsburgh was endless and I watched my daughter's face the entire time questioning how was this happening to her and not me! Never allowing the thought to settle in my mind that was this tumor or mass might be cancerous? No way, I would not allow such a thought to exist! They would remove this horrible ugly darkness from my daughter's body, and we would go home and everything would get back to normal!

We were greeted at the Children's Hospital in Pittsburgh by a world-renowned surgeon named Dr. Atkins. He told us that they were going to attempt to go in laparoscopically and remove the mass. I watched as they wheeled her into surgery feeling as if I would not last one more minute through this nightmare, but knowing that I had to remain strong for my daughter. Ten or fifteen minutes after they had taken her in, the Dr. came out with the most bewildered face and said "Please come with me". He took me and Sarah's father to an x-ray screen where he held up an x-ray of Sarah's abdomen, again I saw nothing but a black mass. He said that this mass spanned from one pelvic bone to the other and from what he could see laparoscopically was growing from an ovary possibly both. They would not be able to remove it laparoscopically or be able to make a small horizontal incision below the belly button because of the size and the fact that it had ruptured and was falling apart inside of her! They had to make a vertical incision Finally, they called us to the recovery room. Dr Atkins said that they were very confident that they had gotten all of the mass and flushed the area with approximately 2 1/2 gallons of some type of solution to make sure any and all debris from it was gone as well. He then told us that she had also lost her left ovary and fallopian tube because they were destroyed. I cried but, was thanking God for allowing her to still have an ovary and her uterus that the doctor said did not look affected in any way, as well as the rest of her organs that were in that area. He did say, however, that the mass was sent to the lab for immediate analysis and that he would get back to us in two or three days with the results.

Sarah was resting peacefully and I was just sitting there looking at her thinking how she looked like an angel! To my surprise, Dr. Atkins came through the door with that look of disbelief he had the day before in the X-ray room. He said that he would like to speak to me and my husband in the hall. He said that the reason he was there was because the lab knew immediately that the mass was malignant-cancerous! I felt as if I could not breathe! He went on to say that chemo-therapy had to be started immediately because they feared that when the tumor that he referred to as being larger than a cantaloupe, ruptured that they feared the cancerous cells got into her blood stream! We were going to be moved to the eighth floor, which I later learned was the dreaded floor for anyone to learn that they were going to! I was I to tell my daughter what was going to be? How was I to tell this angel of mine what chemo-therapy was going to do to her, how awful it would make her feel and that her beautiful platinum blonde hair would be no more because of this powerful cancer-fighting drug? I PRAYED FOR A VERY LONG TIME! I asked for the strength to be able to face her with this news and still make her feel that we would make it through this and try to bring as much positive into to it as I possibly could, no matter how, I was determined to bring positive into so much darkness with God's help!!! I told her and she was so confused and asked why and begged me not to make her go through this that she did not want to lose her hair...it was devastating to say the very least. We started the chemo...5 days in a row of this toxic deadly drug that I prayed would find the cancer cells in my daughter's blood and eliminate all of them!

Finally after being there for three weeks we were going home! Now, to deal with the traumatizing effects that this has had on my other three children Scott 13, Jessie 4, and Bowen 2. Why did mommy and Sarah fall off the face of the earth? Sarah was given a three-week break in between each treatment. To her and me it seemed more like three days and we were never excited about returning for more, but, we knew it had to be. We did this until the beginning of August! We were greeted by Sarah's main doctor, Dr. Orlando-The Chief Hematology Oncology Surgeon at Pittsburgh Children's Hospital who has dedicated over 50 years of his life to helping cure children with terminal illness.

It has been three months since Sarah was tested last. She is scheduled to go in on January 23rd, to have regular testing done as usual! I am nervous, but I do not let her see that I am...this long stretch of not being tested has been unnerving for me. I just feel the need to hear those test results often to make sure that no more darkness has entered my daughter's body again! I'm keeping my faith in God, though, to keep his arms wrapped tightly around her as he has throughout all of this life-altering experience! I felt the need to share with you my daughter's story, I read and hear of so many woman who go through this, but, never have I read about a young girl like my daughter. I am very proud of Sarah, she is such a beautiful person inside and out! She always has a smile for everyone, and is famous for that smile and helpful giving attitude in her school and community as well!

This past year has been the hardest in our lives, as well as our nations and I pray that 2002 will bring much healing and unity! We have also been faced with another hardship on top of Sarah's cancer. During all of her treatments and trips to the hospital, my husband's employer said to him on September 11th (of all days) that his absence from work for my daughter's trips no longer fit into their business plan, and he was fired. He has been without employment since and we are getting fearful of what is to become of our financial situation next. Please pray for us, for God to give us yet another miracle so that we don't lose everything that we have worked so very hard for! Thank-You for allowing me to share this with you and I will pray for ovarian research to be blessed continuously with people who are willing to help research this horrible disease that afflicts so very many women, even young women as well!

God Bless you and Best wishes,
Sincerely Sarah's Mom and best friend, Kimberly A. Rager
[email protected]

Every woman with Ovarian Cancer has a story and this one is mine. I did see my Gynecologist during this period, but he wasn't the one who discovered my cancer. When I finally got my final diagnosis, I had two primary cancers: Stage IV Ovarian Cancer and Advanced Localized Breast Cancer. Here is the story of eight months in the life of an Ovarian Cancer patient: July 2000

In July 2000 I thought I was in good health, maybe not perfect, but good. My only complaints were a bit of asthma, a few minor allergies treated with Claritin, a tracheitis problem that kept coming back with a cough, and a few extra pounds I couldn't lose. I was 52 years old, married for 14-1/2 years, with a 10-1/2-year-old daughter. I homeschooled my daughter, was one of the leaders of her Girl Scout troop, and did some part-time work writing web pages.

One week after the Fourth of July I went to my Primary Care doctor (an Internist) for a regular six-month checkup without any worries. My risks for cancer weren't a consideration. I always heard that you need to have a sister or mother with breast or ovarian cancer to have an increased risk. I didn't. What I had was a paternal grandmother who had died from breast cancer in her 50's, a paternal aunt who had died from cancer in her 50's, and a maternal aunt who died from ovarian cancer.

I casually pointed out some swollen lymph nodes on my neck that I had first noticed when I had been sick with a virus. How long ago? About six weeks. Too long he said. He wanted me to have it checked out so he referred me to the same doctor I'd seen 8-1/2 years earlier for a partial thyroidectamy (benign). He saw me two days later. I should have known I might have a serious problem when my doctor made the appointment for me. In July I had a CT scan of my neck, followed by an ultrasound of my neck.

On August 3 I had a strictly routine yearly exam with my gynecologist. All he said was get a mammogram and come back next year. I had an infection in my umbilicus (that later was diagnosed as a metastasized tumor from my left ovary) which he looked at and told me that it would have to be lanced if it didn't clear up.

I had a lymph node biopsy on August 9th. On August 15th my internist gave me the diagnosis: papillary adenocarcinoma. I asked him to write it down. He told me that the lymph node was not the primary site and that the next step was to find out where it came from. He referred me to an oncologist at St. Barnabas Cancer Center. The first appointment available was for the day after Labor Day. In the meantime I scheduled tests: mammogram, thyroid ultrasound, nuclear thyroid scan, CAT scan.

I met with the Oncologist the day after Labor Day. He set up an appointment with a breast specialist for the following day since the mammogram results were suspicious. I had an ultrasound in the breast specialist's office and he arranged for a biopsy to be done on Friday when he confirmed I had localized advanced breast cancer.

The lymph node tumor was on the left side and the pathology report indicated it was not from the breast cancer in my right breast. Another week was spent figuring out the origin of lymph node involvement to rule out thyroid cancer. I arranged to pick up slides from my thyroid surgery (8-1/2 years earlier) and brought them to my oncologist. He called us in for an appointment on a Friday when he gave the final diagnosis: ovarian cancer and breast cancer. By this time it wasn't a surprise because I'd thought that was decided a week earlier.

I was referred to a Gyn-Oncologist with offices two floors up. We took the elevator and made an appointment for the following Monday. The doctor was leaving for the weekend when we were in the office and he talked to my husband and myself. He and the oncologist had already spoken about me. On Monday, after examining me, he scheduled me for surgery as soon possible to remove my uterus, fallopian tubes, ovaries, and umbilicus (definitely metastasized from the tumor on my ovary) as well any other sign of cancer. He explained his philosophy on surgery. He won't do too much because he doesn't want to affect my quality of life.

We got a call later in the day - surgery was scheduled for Thursday. Surgery was scheduled to take 1 to 2 hours. Instead I was wheeled into recovery after just 25 minutes. There was such a big difference between the CAT Scan done on September 2 and surgery on September 28 that the surgeon was surprised. He wasn't able to remove as much as he planned. He wasn't able to remove my ovaries or tubes. He did remove my uterus, omentum and umbilicus. As he explained it to my husband, if he wanted to take all the cancer out, he would have had to remove everything from here (hand held high) to here (hand held low) and that was just too much.

On October 2 I had my first of 6 taxol/carboplatin treatments and went home. By Sunday I felt well enough to take my daughter to church. I had treatment #2 on October 23. The doctor measured the remaining lymph node tumor and said that it was smaller. He also thought my breast tumor was smaller. By Sunday I felt well enough again to take my daughter to church. The following week I felt well enough to take my daughter and her friend out Trick or Treating. They got tired before I did!

I saw the GYN-Oncologist and he reported that both he and my oncologist believe I'm making good progress. All indications from the exam were that the chemo is working to reduce the size of everything that could not be removed during the surgery. If all progresses well, my oncologist will tell me when it is time to go back to see him and have more surgery to finish what he started. I have chemo #3 the day after my 53rd birthday. My CA125 is down to 350 from a pre-surgery 451. By Sunday I managed to take my daughter to church but I didn't feel well.

I had another CAT scan done on December 1. They were not able to find a vein to inject the contrast, so I only had it done without contrast. The results were basically the same as the one on September 2, but a little worse. However, there was a 3-1/2 week delay between the first CAT scan and surgery, and the surgeon had been surprised by what he found. I think that a comparison might not be very valid because of that delay. If this CAT scan looks a lot like the one on September 2, that might indicate an improvement from the time of surgery. I hope I'm right and it isn't just wishful thinking.

I had Chemo #4 on Monday, December 4. On Friday I got the results of the blood tests. CA125 went down to around 250 but the CA27/29 went up to 44. My doctor didn't understand this since the tumor in my right breast is smaller. On Sunday I didn't get to church. It was the first Sunday that I missed going to Mass since I got out of hospital on October 2nd. I was still feeling very fatigued. It seems each time I have chemo the fatigue lasts a few days longer.

I felt great for Christmas and was strong enough to bake (and eat) a lot of cookies and I only gained one pound! I have chemo #5 the day after Christmas but won't see my oncologist until January. Then he's going to setup another CT scan and more blood tests. I'm hoping those tests will show some progress. On Sunday (New Year's Eve) I missed church again, but our cars are still snowed in anyway. I'm feeling more muscle and bone aches and fatigue this time. I don't get any real nausea from chemo but my appetite is off and things don't taste good.

When I went for my checkup on January 8th the lab nurse had a very difficult time getting blood out of me for tests. The chemo nurses had also had a hard time with my skinny little veins. My doctor told me that the time had come to have a port installed. That was done on January 11th. The surgery lasted one hour, longer than the surgery in September.

On January 16th I had the last of six scheduled chemo treatments with Taxol and Carboplatin and was scheduled for another CAT scan for February 5th. I know my GYN-Oncologist wants me back for more surgery at some point. As he pointed out, it isn't advisable to leave ovaries in a woman who has had ovarian cancer.

During January I started taking Glutamine before and after chemo to see if it would help the neuropathy in my feet. It seemed to help in reducing it. At least they didn't hurt at night from the weight of the covers and instead only felt a little numb and tingly.

February 2001

I had another CAT Scan on February 5th. The results showed no change from the last CAT Scan. I was told this means that my disease is "stable" and I am to have two more treatments of taxol and carboplatin. I had treatment #7 on St. Valentine's Day. I'm glad that my husband gave me my box of chocolates the day before, because I quickly lost my taste for them from the chemo.

I'm taking one day at a time. It is hard not being able to plan ahead. It is hard not knowing whether I'll be feeling well enough to go camping with my daughter's Girl Scout troop in May. It is hard not knowing whether I will be able to go with my daughter and her friend to the In-Sync concert in June. (Last June we saw Ricky Martin.) I'm taking one day at a time.

I want to let women know that PAP SMEARS DO NOT detect ovarian cancer. I did a study of my own and found that there are a great deal of women who feel at ease after having a pap. This is a false sense of security.

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I was diagnosed with advanced ovarian cancer stage III-c, grade1-3 on July 2, 1998, age 27. I had cancer in my ovaries, fallopian tubes, parametrium, cul-de-sac, cervix, uterus, 50 lymph nodes (pelvic and aortic), sigmoid colon, bladder peritoneal, right pelvic gutter, peritoneum, small bowel and part of my stomach. I had a total hysterectomy, bilateral salpingo-oophorectomy and complete tumor debulking that lasted 8 hours. July 13, 1998 I had my second surgery to insert a portocath this one didn't take long & I was awake for it. July 14, 1998 I had my very first chemotherapy. My first 6 chemo treatments were Taxol& Cisplatin. My next 13 treatments I got Doxil, Taxol& Carboplatin. After those 13, I had 24 treatments of Taxol. When I finished with those 24 I had another 24 treatments of Taxol. I've had 67 treatments total with 61 of those in a row. My cancer count, otherwise known as a CA-125, started at 379 July 1998 and is now at 30.

Recently I was told I have a brain tumor called frontal lobe. Three months after I was diagnosed in 1998, my mother age 50, was diagnosed with cancer of unknown primary, otherwise known as ACUP. Mother and I got chemo together at the hospital on the same days. I had the nurses put a cot in her room so we could be together while we got chemo and slept. We could really relate with what the other was going through on a daily basis, mentally and physically. During all of this I had my third surgery, second look surgery, April 20 1999, and it lasted 6 hours. My mother passed away 8 months after her diagnosis on June 16, 1999. I miss my cancer/chemo buddy, nurse, teacher, mother and best friend, more than I could have imagined. My mother told me to fight with everything I have in me and that is just what I'm doing. Sincerely from the heart, Melissa Barwick

For more information about my cancer visit my web site at https://www.kittenz.net

On January 9, 2002 I was canoeing through the mangroves of the Everglades. We paddled all afternoon trying to reach the Lard Can chickee, a raised platform camping shelter. We didn’t make it. We had started too late in the day and as days turn to night early in January (even in Florida), we elected to be safe and turn back. That evening a vein popped out in my neck. It was concerning and unusual. It didn’t go away. Upon returning to my hometown I went straight to my doctor. He immediately took a chest x-ray. When he returned to the examining room to speak with me, I knew it was something serious. He sat down in front of me and looking me in the eye said he wanted me to see the best pulmonary specialist in town on this same day. As there were no openings in that busy doctor’s calendar, he sent me to the emergency room of the hospital where that doctor worked knowing I would eventually be seen by him. My right lung was filled with so much fluid it was pressing on my pulmonary artery and that is what was bulging from my neck. I had spent the previous week paddling and biking and hiking in Florida Keys and Everglades with the use of only one lung. I had noticed shortness of breath but chalked it up to being almost 50 years old and out-of-shape. How wrong I was!

Subsequent tests showed a mass on my one remaining ovary. Surgery was done by an gyn-oncologist. I was sent home with shots of blood thinner to be self-administered twice a day to dissolve the clots in my spleen and liver. The lab report indicated ovarian cancer. An appointment was made to begin chemotherapy in three weeks. Although life had changed in a day, friends and family (who all live a long distance away) kicked into high gear. People I do not know began praying for me. Cards and calls and food came. A dear friend called and said I should go see this wonderful doctor at Johns Hopkins who specializes in ovarian cancer. Although my husband and I know Johns Hopkins well as he is a patient there and a cancer survivor, I did not have the energy to deal with yet another medical facility. My friend didn’t quit. He went to my husband and told him he had to contact Hopkins for a second opinion. Russ made the call and I was given an appointment within two days with Dr. Rick Montz. In order to be prepared for that visit we had to obtain copies of medical reports and lab slides that were located in 3 different facilities IN ONE DAY. All were provided. All came together so quickly and easily that God had to be opening the doors. Dr. Montz advised a completely different treatment plan. It required lung surgery as soon as possible to prevent further accumulation of fluid in my right lung. He arranged for Dr. Yang, a thoracic surgeon at Hopkins, to do a pleuracentesis. Although lab reports indicate ovarian cancer also in my lung, Dr. Montz suggested “watchful waiting” rather than immediate chemo as MPSC is resistant to chemo. My CA 125 went from 487 prior to initial debulking surgery to a baseline of 21. Three months out it registered at 11; at six months it was 8. CT scans indicated no visible cancer, but the most recent one indicates an accumulation of abdominal fluid. I know the cancer is still there, but I have been given the gift of time. How long I do not know nor do I need to know.

The changes MPSC effected in me are likely not noticeable to those around me – even those who know me well. MPSC has made me a more thoughtful person and has strengthened my faith. I am thankful for the lessons MPSC has taught me. I have met many people I would not have otherwise known. I see caring and love in others that before I overlooked or didn’t trust. This trial has helped me separate what is truly important in this life from those things that are simply pleasant. I always have served others and been quite active in my community, but now I do so with more purpose. I cherish every moment spent with my family and friends.

I was 28 when I was diagnosed with ovarian cancer. I had been working really hard at work and at uni, I had just started a new job and my husband had quit his job to start a new business. We had just bought a new house. I was tired and felt run down. For the previous 2 years I had experienced stomach bloating on and off - sometimes I would come home after work with an enormous 'pot belly' which I would go to sleep with, but by morning it would be gone. I checked this out with a number of Drs and received a range of diagnoses - my favourite is 'a bladder infection so minor I can't believe you bothered us with it'...eventually I developed mid-cycle bleeding, and after finally convincing the Dr that I wasn't pregnant, I managed to get myself a referral to a gynaecologist. Ultrasounds revealed large bilateral ovarian cysts (by this time I could feel them when lying down), which were to be removed via laparoscopy. Since my twin sister had recently had a similar operation I wasn't the slightest bit concerned -

Immediately after the operation the gynaecologist told my husband that one of the 'cysts' had burst and the other had a very concerning appearance. The gyn had debated whether or not to do a frozen section, but decided to finish the op and send the tissue off for urgent pathology. As my husband had had testicular cancer he was able to have a very frank conversation with the gyn, so he suspected the worst, but as we didn't know for sure he stayed positive, and I don't really remember being too concerned (I think that was the pain meds). The next day, while we were at home patiently waiting for the pathology to come back, my gyn tracked down a gyn/onc in the same hospital, told him the story and booked me an appointment. Op on tuesday, pathology back on wednesday, appt with the gyn/onc on thursday - things move quickly when you have cancer.

The gyn/onc wanted to do surgical staging, the options were another laparoscopy or a laparotomy, he recommended the latter and said if I was his sister he would insist on that - we went for the laparotomy. A week after the first op the second was performed (the tuesday after Easter weekend - thanks Bernie). Thankfully I had a very good gyn who had had a very good look around in the first op and so briefed the gyn/onc thoroughly. He'd also done a good job with the first op so no further evidence of disease found. I was stage 1a, after 2 years of symptoms, someone up there is looking after me.

The path of my recovery has been fairly easy to travel. I find the week before each checkup almost unbearable. Thankfully, while some test results have been less than satisfactory (took 2 years post diagnosis to get all clear test results), there has been nothing untoward found on subsequent ops. The next step is a radical hyst - they left an ovary behind but it's been operated on a couple of times now, and that together with my husband's history means we are unlikely to have children. A small price to pay really in the circumstances. So now that I have done all of my research on OvCa I am now going back over it all again to research early menopause, HRT etc. I like to surprise my Drs by knowing technical things about my condition, I get them with at least one thing on each visit, keeps them on their toes.

One good thing out of all of this is that I have met some absolutely wonderful people, from Drs to receptionists, even the lady who takes my blood every three months (she uses a child needle because I hate needles so much). These people have truly made a difference in my life.

On the serious side of things, your health is your number one priority, don't ever let it down. Before my diagnosis I was complaining about being tired and my father told me I should get the problem checked out because one of his work collegues had just been diagnosed with cancer and that was his main symptom - of course I shrugged it off, that will never happen to me - do you know, it happened a week later. We are not immortal, things do happen and can happen to each one of us, so we need to be vigilant about our bodies and how they are feeling. Our intuition is so powerful, don't ever ignore it. If you feel something is wrong, see a Dr. If you are not happy with what you are told, see another. Don't take no for an answer and don't let Drs flick you off as a complaining woman. And don't put symptoms down to your busy life as a wife/mother, all too often we look after others before ourselves, put yourself first for a change.

Try to do something nice for yourself and for someone else each day. And take care.

My mom had her diagnosis after a 3 months period, searching for the answers that would justify her light stomachache and a progressive increase of her abdomen. Transvaginal sonography identified it, and she was led to surgery after 3 days. That all happened in july 2002. Her stage was IIIc. After a protocoled 6 month chemotherapy with great response and having a great quality of life, it was identified recurrence of the disesase last april (2003). Now in august, my mother is still fighting against it. The disease has not responded yet to chemotherapy (we will start on the 4th drug on september 4th). She has ascites, she is very tired, but she is not giving up... Never give in guys... Miracles happen every day. I know it´s hard, for us relatives, to be supportive all the time, while we are watching someone we love fading beside us, and not being able to do anything... But, if we DO whatever we can, be sure that life, nature and GOD (whatever is your belief), will respond to us. I´m certain that, as long as I play my role, I´m allowing fate to play its role, and I know it will make things turn allright, no matter how they end, I´m sure it will be allright...

July 25, 1996 (7 years ago today) I had surgery for ovarian cancer, which was eventually staged at IIIa. The soft tissue tumor was the size of a good sized watermelon and it split open as it was being removed. All washings were negative for the clear cell carcinoma I was diagnosed with. The surg/onc removed my uterus, fallopian tubes, ovaries, my appendix, over half of my omentum, half of my stomach and re-sected my colon. He stated that tiny tumors were seen in my abdominal wall, but that chemo would take care of those. I had 6 rounds of carboplantin/taxol. To date, my CA-125 remains steady at 12 (!) and the chest-xrays remain clear. After the 2nd chemo, I returned to work full-time. I scheduled my chemo day (every 3 weeks) for a Thursday and returned to work on Fridays. The side affects usually hit me on the second day and this schedule allowed me time to rest on the week-end. Not to say that I did not feel the effect of 8 hours of chemo at work, but I needed to be at work for my mental well being. I had an 8 month old lab/shep puppy who kept me laughing and 4 goofy cats who slept with me. One of my cats, Alfie Baby, never left my bed and slept just under my chin always. He knew something was wrong and did his best to keep me smiling. My work place was supportive and this helped me greatly in my recovery. I did feel the full effects of the chemo and it is a painful process and difficult to describe as everyone deals with the discomfort differently. I know that after the 3rd chemo, I found walking difficult due to the pain in the legs. My fingers were numb and tingling as were my feet at various times. My hearing has diminished a bit. But I am still in remission (!) . My hair grew back curly and it is a new experience after years of dealing with long, straight hair. I enjoyed reading the stories and it has helped me tremendously to know that my experience is not one but one of many, and I wish all the best in their recovery. Dina

I am 37. I was diagnosed with this type of cancer in 1996. My right ovary was removed. No chemo. She said it was non-invasive, even though the ovary had ruptured. Then, this year, my periods had stopped and my gyno found a left mass. I had surgery in March and it was stage 3 -- same type. Everything -- including most of the omentum -- was removed. There were also some lovely nodules on the surface of my colon. My heroic surgeon painstakingly removed 40 adhesions. Scary. Chemo now -- and much emotional wreckage. I have been told the same prognosis -- 50-60% chance of recurrence. Recurrence seems likely since this is already a second time. First CT-scan is next week. Chemo is almost done -- Taxol is my drug. Hair loss is the primary side-effect.

Wow, I don’t know where to start. I had been feeling bad for about six to eight months, irregular periods, stomach bloating, nausea, etc. Since my mom died of OVCA at 48 I knew what it was, or so I thought, but was in denial. I am currently 44 years old, the same age my mom was when she was dx. On June 3, 2003 my husband made me go to the doctor for an examination after noticing my ever-growing symptoms. As for me, I really didn’t want to know. There is a very strong history of cancer on my mother’s side. Well, it didn’t take but about 10 minutes of examination by the doctor to know something was very seriously wrong. I was admitted immediately into the hospital for further testing, lab work, cat scans, ultrasounds, etc. Within 24 hours, I was diagnosed with Ovarian Cancer. After 3 days of continual testing, I was sent to the Florida Hospital Cancer Institute. I met with my doctor, Dr. B. Hannah Ortiz, one of the few female Gynecologic Oncologists, for a briefing on my upcoming options. I had five major tumors, both of my Ovaries, my Liver, my spleen and a tumor between my lungs. I also have pleural fluid and ascites. It had also spread to my lymph nodes, my diaphragm and outside of my abdominal cavity. After extensive surgery, they were only able to remove about 60% of the cancer surgically. My pre-surgery CA125 was 14,700. After surgery my CA125 is 1,400. My diagnosis is advanced Stage IV Ovarian Cancer. I have had my abdomen drained on two occasions eliminating about 4 liters of fluid as well as a pleural effusion to remove large amounts of fluid from my lungs on two separate occasions. The fluid from these also tested positive for cancer cells. I am getting ready for my second cycle of chemo, Taxol/Carbo. I tolerated the first reasonably well and hope that it continues. I haven’t gotten the results of the effectiveness of that treatment yet but will have it shortly. I am determined to fight until the end, whenever that may be. Sorry to ramble on but I want to encourage all of you who, like me, are at high risk, to get the proper testing done early and frequently so that you don’t end up with a dx of advanced Stage IV. If you get dx early, the survival rate is very positive. Don’t be in denial like I was, it only makes it worse. Thank you and God Bless

Crispin passed away in May of 2003.

1998…

What the hell is happening to me??? There is NO WAY I can be this sick! Why am I so tired all the time? Why do I feel so achy and feverish all the time? I eat right, I exercise, I'm not overweight - what else can I do??? I'm a 37-year-old woman and I'm walking around like I'm 90 years old! This is ridiculous! I have to find out what's wrong. I have to call the doctor.

Two doctor's appointment's later…

God, I feel even worse and no one can tell me what's wrong. Maybe I have a brain tumor or maybe I'm just a hypochondriac? Maybe I need to exercise more. Maybe being a vegetarian for the past 5 years is causing some kind of vitamin deficiency. Maybe I'm just depressed. I guess I'll call the shrink my gynecologist recommended and see if I can snap out of this.

Five shrink appointments later…

These damn antidepressants are not working at all. I still feel sick all the time. My stomach is so bloated and I have no appetite at all. I'm really starting to worry that something is seriously wrong. This weekend, I never got out of bed; never even took a shower. All I can seem to manage to do is go to work and come home to crash. My friends don't even call anymore because I always say I'm too tired to do anything. I'm exhausted and I haven't really done much of anything. Maybe I'm just under too much stress at work.

Tuesday morning, September 18, 1999

Oh My God. When I woke up this morning, I felt a lump in my pelvis, right side, about the size of an egg. Could it be a tumor or something? I have to call the doctor! Don't panic, it's probably nothing. Relax. Seriously, don't freak out. You're not even due for your yearly exam so don't be obnoxious and ask for an early appointment, ok? But at least call and make the appointment.

Wednesday morning, September 19, 1999

Well, apparently it doesn't look good, whatever it is. My gyn said she's not sure but she thinks I have a mass. I don't know what "mass" means. She's sending me to a specialist called a gynecologic oncologist for an exam and a ct scan. I'm not nervous at all. Actually, I'm extremely calm. Whatever it is, I'll take care of it and get right back to work. No problem.

Thursday afternoon, September 20, 1999

The gynecologic oncologist said the ct scan showed I have a large tumor on each ovary. He looked very serious and somber. He said I have to have surgery right away, like in the next week. Having a ct scan was weird and a little scary but I'm still not worried. I guess surgery means a hysterectomy. I feel no emotion at all. Just a sense that I want to get this over with. I've never heard of ovarian cancer before - I wonder if it's serious?

Three weeks later

I'm going to die. I am going to die. I have advanced ovarian cancer and I am going to die. I wish I could just die right now. I'm in so much pain from this damn surgery and no one seems to care. The nurses are so mean and I don't even know what the doctors are saying - nothing makes sense. Chemotherapy? What is happening to me? This can't be right! I have no cancer in my family! We are all so healthy! Damn it! What did I do wrong? Is God punishing me for something I did? It's all my fault. I've been a bad person. I have so many things to do before I die. So many apologies to make, so many amends. What has my life meant up to now? Nothing. How am I ever going to make my life count?

Six months later…

The chemo isn't working and people are starting to have that panicked look on their faces again. I'm desperate for some kind of experimental drug or clinical trial but I can't find anyone to help me. I read about people who are on their last breath and then they enter a clinical trial and are CURED. I want that! My doctor is WAY too busy to sort through all the different trials and I really don't understand what they all mean. I'm not a scientist! I'm not a physician! How do they expect me to do this myself?

One year later…

Chemo, chemo, chemo. I am so sick of chemo. I've had so much chemo that I could scream! At least I started OCAN and I feel like I'm doing something to make a difference for other women. I'm getting really good at public speaking (ok, I admit it - I'm a big ham!). I lost my hair for the second time but I kind of like being bald. It's good for getting attention because people know I have cancer. I don't want to look TOO healthy! Ha Ha! The only thing is that I'm cold all the time. And I'm in pain a lot too. Who would have ever thought I could endure so much pain for so long? I'm finally beginning to embrace the pain, the doctors' appointments, the waiting for test results, and all the other crap I go through every day. This is my life and I am grateful to still be alive, even if it's like this. Life is good!

Another six months later…

This last surgery I had was really awful. I decided to go down to Houston for it since I like that doctor so much. I guess they did a pretty good job but recovering from it has been hell. I have a scar from my boobs to my pubic bone and I'm in PAIN. I can barely walk but I have to get back into shape so I can play tennis again. I'm literally craving tennis! And real food! I am so hungry! I've been on TPN for almost a month now. Still waiting for BOWEL FUNCTION! My whole life now hinges on whether or not I go to the bathroom. Crazy!

Today…

Two years ago, I thought I was going to die within weeks and HERE I AM! I'm not dead yet! I still have a decent quality of life and I still have hope. So many things have changed in my life and they are all for the better, IN SPITE OF CANCER! I'm so much more positive now and I'm so much more open-minded. I'm willing to try new things, take risks, and I think I'm a nicer, more tolerant person. Looking back on my life, I realize I was a negative thinker and quite skeptical about most things. Now, I feel open to possibilities and ideas. OCAN has done some great awareness work and educated the public about ovarian cancer. Maybe OCAN will be the reason that one woman gets an early stage diagnosis. That would be great.

On May 16, 2000 I was diagnosed with ovarian cancer. I remember that my first consultation to the Oncology was not very pleasant. He told me I had a 50/50 chance of surviving ovarian cancer. I felt like it was the end of my life. I had a second surgery on August 21, 2000 and before this 3 cycles of chemotherapy. Now I am proud and happy to say that every biopsy they took came back negative and the only thing I need to do now is to finish 2 more cycles of chemotherapy and I will be able to get my life back. I know that there is a possibility of recurrent cancer, but I feel I was given a second chance to live. Now I am here to support the new people that are still fighting, hoping and praying that God will help us and give us the cure to cancer. Ovarian Cancer is being diagnosed everyday to a much younger group of people. People in their 30s and like me have kids and need support and there is no help out there. We need new programs for families of cancer patients. Welfare can't help you if you own a vehicle valued over $6,000, and Social Security Disability takes over 4 months to get an answer. In the mean time how do you manage to feed your kids?

Here it is my friends... I first found out I had ovarian cancer in August 1996 and had a hysterectomy followed by chemo. [taxol mostly] I also had a large tumor on the liver. But the chemo. seems to have done its job for me. I was stage 1V, I forgot to add. I beat the odds so far here and I am very thankful. It has been seven years now and things are good at this time and I hope and pray for a long time. Please for any of you struggling with this , be as strong as you can and I am sure you too can get through this. When doctors tell you maybe one year ot two and here you are telling your story to give others hope, well I think I am here for a reason don't you? You just don't know about this stuff for sure. So friends....keep the faith and I send good thoughts to all of you......Jan

UPDATE 2008:

Jan here once again to update my story. I am now just about 12 years survivor of ovca stage 4. No recurrence to date. I hope this will give hope and encouragement for those who might be in need as that is the reason I am here. My story is posted here. Hugs and healing roses from my garden I send to all of you. Jan

My story started about 15 years ago, when cancer made its first visit into my family. It started with my sister who at that time was 43. It came as breast cancer. The cancer responded to surgery, then chemo and then finally radiation. She was able to live cancer free for a total of 10 years before she passed away from a reccurence.

Next, my father was diagnosed with prostate cancer, he went through surgery but did not need any additional treatment after that. At this moment he is 84 and is cancer free.

Now the reminder of my story covers a period of 6 years, my Mom was the next victim and this time it was ovarian cancer, a stage IIII. She went through surgery & several rounds of chemo that never left her in remission, she passed away only 30 months after diagnosis. Quickly two years after that I was diagnosed at age 43 with ovarian cancer a stage 3b. I have completed chemo, second look surgery and proud to say I have been in remission for the past 30 months. KNOCK ON WOOD.

The University hospital where I had my treatment, recommended genetic testing because of the many occurences of ovarian and breast cancer in my immediate family of 6. I was the first to be tested for the gene mutation, and it came back positive for the BRCA 1. At that time the only smart thing to do was to have my breast removed to prevent any possibilites of getting breast cancer as my risk factor was very high. One of my other sisters also was tested and she also was positive for BRCA1 and she also went through the preventitive surgery to have her breast removed. Also my twin nieces (daughters of my sister who had the breast cancer) were tested, and one was positive and one negative. The one at high risk also opted to play it safe and at 37 years of age has had her breasts removed and will have a hysterectomy this fall.

We were hoping to have this all behind us but I had one sister who decided not to get tested for the BRCA1, (I know we all tried to talk her into being tested but she wouldn't budge). And now I'm very sad to say that she will be having surgery this week for a pelvic mass that most likely is ovarian cancer. I guess what blows my mind is to see 5 people in a family of 6 with cancer, and three of them ovarian. I wonder if this is an oddity or what?

I need to express my grief for the loss of my mother, Deborah Chen who left us so quickly this spring.

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For My mom, Deborah Chen (November 10, 1931 - April 28, 2003) Mom, I love you and wish you could’ve stayed with us for as long as we’re alive; we all miss you so much. After a brief recurrence of Ovarian Cancer this spring, you couldn’t hang on any longer; you were in so much pain. I had prayed to God either to make you well again or take you quickly. I guess, my prayer was answered, it was not what I hoped for, but it was what God had planned. Exactly 5 years ago, almost to the day, we found out you had Stage IV Ovarian Cancer. At that time, we were in disbelief, we were naive; we had no idea what we were in for and you made it appear like it was so simple. You had 2 operations and 9 rounds of chemo in total. After the 3rd chemo, you were given a clean bill of health. Dr. Stewart said he couldn’t see any cancer cells, we were elated! Just to be sure, you were given the rest of the chemo, just to be absolutely sure. It was hard on you, your body ached, you lost all your hair, food tasted metallic, but you were a trooper, you weren’t going to let the cancer take you! How we rejoiced, thanked God for the miracle. I always said to you, "Mom, we’ll never win the lotto, you beat cancer, that’s our windfall!" You’d smile and agree. During the five years, you were in such good health, we didn’t worry about the cancer coming back; we didn’t think about it much. You saw your sister before she passed away, you became a grandma again; You left us April 28th just before noon; Frank and I were with you and saw you go, for that I am grateful. Since then, not a single day has gone by that I don’t think of you. You are the first thing I think about when I wake up and the last thing I think about before I fall asleep. Life continues, but oh, how I grieve for you, mom. Till we meet again, I love your forever, Mom. Shome

Cindy Melancon, Founder of Conversations and tireless ovarian cancer advocate, passed away peacefully June 4, 2003.

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Ovarian Cancer Has Symptoms

I want to share with you the early symptoms of ovarian cancer which I experienced that you may want to send to your family and friends via the Ovca Alert at the end of my story. I recognize those symptoms may be different than yours, but at least this is something.

A regular check-up in July 1991, just six months prior to the initial surgery (February 3,1992) and discovery of the cancer, did not reveal an enlarged ovary or anything unusual. About three months later after the check-up (October 1991), I found myself needing to urinate again several minutes after I thought I had emptied my bladder (urinary frequency and urgency). But we had been down to the Gulf coast and I believed that I had picked up a little bladder infection from the water down there. I was also dealing with an allergic sinus drainage by drinking large amounts of fluids and thought that was contributing to the urination problems. A test for an infection in the urine was negative.

The rest of the symptoms I put down to simple stress and a hectic schedule. I had a minor backache. My back below the waistline was tense and tired after a long day at work, but weekends and resting at night along with an occasional aspirin seemed to relieve the mild muscle pain. After the diagnosis of a basketball-size tumor, I remembered how much like pregnancy the backache was. I also had a bloated feeling, a feeling of gaining weight, particularly around the middle, during the late fall ( 4-5 months after the normal check-up). The expanding waistline was making it difficult to button some of my skirts. In response to that feeling, I began to eat less of the fattening holiday goodies.

In mid-January 1992 (6 months after the normal check-up), still feeling fat, I found, much to my surprise that I had a sudden weight loss of ten pounds. That kind of weight loss is very unusual for me even on a diet, but I didn’t take it as a negative happening. For once, a diet had worked and I had shrunk my stomach. My major symptom was growing fatigue. All through the fall I was working long hours and just could not get enough rest. Even with long naps over long weekends, I was still exhausted. The weekend before the cancer was discovered, I only had energy for about 1-2 hours and then I would have to rest for 30-45 minutes. But again I thought I was just stressed from being a mother, a wife, volunteer and employee. There was no change in bowel habits, no change in menstrual periods or flow, and no real pain of any kind.

In late January 1992 (7 months after the normal check-up, I finally felt a small knob in the umbilical (belly button) area, but only when I coughed. This is not the usual way for someone to discover this cancer. At the point of discovery, the cancer had spread from one ovary to the uterus, the other ovary, a 12" long portion of the bowel, a portion of the bladder, and possibly the lymph nodes. And yet this ovarian cancer was considered to have been discovered in the early stages! When it is discovered in later stages, the symptoms are usually abdominal pain and digestive disorders.

This cancer can occur at any age from teenage years onward, but the chances increase with age. It can run in families (5-10% of the cases) or as an isolated case.

Believe it or not when the doctor first asked me if I had any problems or symptoms, I honestly said no. In my mind there were no unusual symptoms that could possibly be related to the mass in my abdomen. After all, stress and fatigue are a normal part of a busy woman's life. It took me 3-4 days after the diagnosis before I realized that all of the above feelings were related and had been building/getting worse since early fall. All of the symptoms had some physical basis related to the cancer. If there is some good in this story, it will hopefully alert you to listen to your body and not to attribute too much to simple stress.

Cindy Melancon is the founder/publisher of Conversations: the International Newsletter for Those Fighting Ovarian Cancer. To subscribe or learn more visit her website www.ovarian-news.org. Or email the newsletter at [email protected].

Send the symptoms to a friend.

From a Heartbroken Son

My nightmare began in Dec.98 when my mom, then healthy her whole life, suddenly began to look very bloated.

In Jan.99 she went to the doctor and he sent her to a gynecologist oncologist and i new there were serious problems. She was diagnosed with probible ovarian cancer and an operation was performed Feb 4th 2002.

It was 3rd stage ovarian cancer and the doctor said her probibility of survival with chemotherapy treatment was 1-5 years.

Well some 4 years later the doctor has said there is nothing else he can do and now it's time to stop chemo for quality of life.

I'm slowly watching my mom die every day that goes by and there is nothing I can do to save her or make her feel better.

For the people who read this, take time to spend with your loved ones and make sure they know they are loved very much. Pass the message to get checked out by a doctor often. My mom was never sick and she felt no need to go to a doctor. The doctor said if they would have caught this 6 months earlier it would have turned out different.

I wish I could have been a success story, but maybe someone will read this and push someone to go to a doctor or remember the express their love a bit more.

I was diagnosed with Ovarian Cancer in Sept of 2000, they removed my Ovaries which the doctor said they were over twice the size they should have been, they also removed my uterous, appendix, scraped the bowels, etc, they said they took out all they could find. 3 weeks after my surgery I had Chemo for 6 months, the last treatment was the 1st of February 2001.

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I have kept up with all of my doctors appointments tests, etc so I don't know why this is happening to me, there was an abnormality in my mammogram and my surgeon said I had breast cancer but my Oncologist thought my Ovarian Cancer was coming back. I went to a lady Doctor for a second opinion and I just got a call from her this evening telling me thet her Pathologist looked at my reports and he said I had no breast cancer but I do have Ovarian Cancer, she said I would have to have stomach surgery. My Oncologist had told me that my cat scan checked out good so I don't understand what's happened. Has anyone been through something like this? The lady Doctor hadn't looked at the Pet Scan that I had yet but said she would call me when she looks at it, then I guess she will find out how far it has spread. What I can't understand is her Pathologist looked at the slides & reports from the biopsy I had, so what does that have to do with the Ovarian Cancer. Why in the world would they think I had breast Cancer when I have Ovarian Cancer, this does make since to me at all. Brenda

My mom was diagnosed with breast cancer in September 2000. Since then I decided to go the gyno every 6 months instead of waiting every year. I went December 2001 and then in June 2002. As the doctor was finishing his exam he stated that I need emergency surgery and he was recommending that I go to a gyno oncologist. Needless to say I was a little scared. I got a second opinion and he recommended the gyno oncologist. I had no symptoms and am an avid runner and go to the gym regularly. I had surgery on August 7th 2002. A complete hystorectomy and debulking. I was fortunate that the cancer was only in the tumor, stage 1b, attached to my right ovary. I was very fortunate, I recovered from surgery very quickly. My doctor recommended 6 treatments of chemo for precaution. I sailed through the chemo. I ran a half-marathon 3 days before my lasat chemo treatment. I know not everyone will have as easy a time as I did, but please know that we can overcome. I thank my family and friends for being very supportive. There is always an upside, at least I didn't have to shave for at least 6 months. Good luck to everyone.

I am 18 and I was diagnosed with ovarian cancer on October 2, 2002. My story starts like this. I had noticed my stomach starting to swell one day but I didn't pay any attention to it. A couple of days later I had mentioned it to my mom and she said I could be pregnant but I didn't think so.

I had gone to school on a Monday and I had been having trouble breathing so I called my mom and she came and got me. She called the doctor and they told her to bring me in. They did a urine test and after a few minutes the doctor came in the room, she asked me if I had a steady boyfriend and asked if we were going to get married one day and I said yes, she told me that I was pregnant,I cried for hours. She sent me to Dr.Green, a baby doctor and they took a bunch of tests there also. Every single test they took came back positive that I was pregnant. She said she didn't think I was pregnant but she thought I could have fibroid tumors. She sent me to a Dr. in Louisville Ky that dealt with ovarian cancer. They done test and paps and he told me that I had a mass as big around as my abdomen. I hadn't weighed that much at first but when I went to the doctor the first time I weighed 118 when I had only weighed 110. I knew something wasn't right.

The doctor in Louisville told me I had to have surgery and quick. The mass was pushing on all of my organs and I couldn't urinate or breathe well. I went to my regular doctor on a Monday and was in surgery on Friday that same week. I have been so lucky that I did not have to have chemo and I thank God every single day for that. I try to tell people not to take life for granted because you don't know what may happen. If you have a similar story please write me at [email protected] thank you If you need a very good doctor go to Dr.Metzinger in Nortons Hospital in Louisville KY

ADDENDUM ADDED March 29, 2003
Since I last updated information about my Mom things have been going well. She has since finished two rounds of Chemotherapy. She did so well she is now in remission. She now goes in every three months to see the doctor.
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ADDENDUM ADDED May 13, 2002
I have received many responses to my mother's story, and would like to update how she is, and to help with any support I can give to anyone.
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I had written a story about my mother [below] at the end of April 2002, and since then I have received many e-mails responding to that with encouragement and support. I would first like to thank those people for taking the time to write me. This is a family's journey and patients, family and friends all need the support. I believe with God all things are posible, and He promises to comfort our tears. I'd just like to tell you all that Mom is doing very well after her sugery April 22nd, and first Chemo. treatment. She is truly an amazing woman,and I even have more respect for her than I've ever had, for being so upbeat and positive. She is actually expressing in her attitude her strong faith in God. She has not let herself get down, but rather embrace the fact that she is alive and has a lot to live for! She has turned her will and life over to the care of God! Anyone who would like to write me ; I extend that invitation to you. I also forward the messages onto my Mom, and she is greatly appreciating the support and encouragement. E-mail at: [email protected] Hello to the new friends I have met lately and would enjoy talking to others. My prayers and thoughts are with you all daily, Kathy Kennedy

Original Story

My mother , who is 64 years old was just recently diagnosed with Ovarian Cancer Stage 3C.

She had been having health problems for quite some time. Her system at first was a lot of indigestion, and the doctor was telling her that's what it was and had her on antacids, then antibiotics. She got to the point that she had to sleep sitting up just to get some sleep. A few months went by, with no relief, when the doctor then told her she had a Hernia at her belly button. At the time she somewhat felt relieved, but she says now she really just hoped that was what it was, because she would fell bad more and more days than she'd feel good.

She continued feeling worse and worse, when he told her she did indeed have a problem with her bowels;that she needed to have an operation called a Rectal Seal to repair the bowel, and at the same time he'd repair the Hernia.

Now all this time she just thought her stomach starting to bloat up was part of this. She had informed myself and my two brothers about this surgery that was planned for some time coming up soon, but that the doctor was sending her to an Oncologist for a check up.

That was 3 weeks ago. That day she came home and called us all to inform us that that doctor was extemely concerned about some fluid inside her stomach. She went in two days after Easter and they did a procedure to extract some of this fluid. Two liters was taken from her. He talked about some of the possible causes, but said he felt it was cancer, and possibly Stomach Cancer.

She also had blood taken, that we all know now was the CA-125 test. She had to wait an entire week before seeing him again. Well, the tests came in to confirm she had Ovarian Cancer. Another week went by before she had the cosultation with the surgeon. She met with him on April 17th, 2002, at which time she was told her cancer was in Stage 3C.

This past Monday April 22nd, 2002 she had surgery at the"USC/Norris Cancer Center" In Los Angeles, CA. The surgery took Six and a half hours. She had a very large tumor, and they removed both ovaries, gall bladder, appendix, spleen, and portions of her diaphragm,colon, and large intestines.

The doctor said he was very pleased though that he had reached the point he wanted to to now treat it furthur with Chemo., and that the lymph nodes or the liver was affected.

Like my Mom said a week ago, "I can't believe this is happening, these things happen to other people!" We are a very strong Christian family and have put the future into God's hands.

I'll tell you what, I have been doing a lot of soul searching and praying. She has been recovering well so far, but I do realize she has quite a journey ahead of her. I really worry about my Dad. It just breaks my heart to see him so worried. They have been married 47 years this June. I just remind him we are all here for him too, and that he needs to express his feelings. He has been doing that since that first when we were all shocked as to what they had to take out! She really is doig well though. Moved into a regular room today, sitting up in a chair daily for a few hours, even requested it today. She is a very strong, positive woman and will give it a good fight.

Thanks everyone for hearing me out. This has been very therapuetic for me. Please keep Peggy and George (Mom and Dad) in your prayers, as you are all already in mine.

I welcome anyone that got through this BOOK to e-mail if they'd like. We can all use some support and understanding right now.

My e-mail is: [email protected]

Best Wishes to all, and God Bless, Kathy

I'm writing this story about my neice Tammy who died of ovarian cancer stage 3C at the age of 28 on Dec 9, 2002. Tammy was the wife of Chris and the mother of Ryan 3, and Madison 2. Tammy lived 16 months after dianosis. She took 10 months of constant chemo but never went into remission. After that we took her to Cleveland Clinic for more treatment but no remission, after this the doctors said no more because it had damaged her body so bad. She went from 180lb, to 67lb. Tammy never gave up faith that she would one day get her healing. We know she did, just not here but in heaven. She loved the Lord and looked forward to going home. Tammy had tumors to come to the outside of her body the size of baseballs from her stomach to her breast. Her bowels didn't for four months, she vomited for seven straight months before she died. Tammy died with her husband Chris holding her hand, her dad was kneeling at her feet, her sister beside her bed, her mother kneeling in prayer, and I had just kissed her head and she went to sleep in the arms of Jesus.

I would love to hear from others... Kathryn
[email protected]

I am experiencing a reocurance of stage 3B and have had 6 treatments of doxil to date (with no side effects). At this point, surgery in not an option and am looking at chemo as a means to maintain the disease at its current state. I was first diagnosed in April of 2000. Had the usual chemo of carbo and taxol as well as second look surgury and 3 IP chemo treatments. Is there anyone out there with a similar situation? Thanks

CA 125 cancer marker for real or not?
During the past year I have had trouble with incontinence, was diagnosed with diverticulitus (doubled over in pain for a couple of weeks), gained weight although I am and always have been a small eater (take meds for hypothyroidism), and couldn't touch my toes or put on socks due to abdominal swelling. I could not roll over in bed and I had quite a bit of abdominal pain.

A quick backtrack: when I was 16 I had a cyst the size of a grapefruit removed from my ovary. I've seen that description before in the My Experience messages. My appendix was the real culprit that caused the cyst to be found. No mention of cancer at that point --1957. They left in the ovaries.

I went on to have two children and had a cycle every 21 days. In my 50s I had no problem with menapause, until a Dr. put me on HRT, hormone replacement therapy for energy. It turned out I had chronic fatigue and fibromyalgia and a rare muscular dystrophy and that was why I was tired all the time. Anyway, my cycle began and hemorraging began too. After a D & C it was time to consider a complete hysterectomy, which I had 8 years ago.

Now this problem cropped up. My PCP doctor I think wrote me off as a "chronic complainer" and used to tell me I had more aches and pains than all his patients combined. Fortunately, I had a compassionate neurologist who took good care of me to the range of his specialty. On his advice I had a colonoscopy--which they could not complete. Internal leisons were such that the scope couldn't make the first bend in the colon. So back to my PCP and I again complained about my abdomen and the swelling, incontinence.

He finally sent me for a CT Scan which lead to our discussion of, "You have cancer, probably non-Hodgkins, which is highly curable." I knew it was something and I was right. Next, was the biopsy. This was not pleasant, and the tissue samples were too necrotic for the pathologist to get a fix on what type of cancer it was. Except for the CA 125 that was a whopping 4400 before surgery, the only real information was the CT Scan of the tumor and spots on my liver, spleen, kidney, and gall bladder.

Debulking surgery went without a problem, although it is taking forever for my belly-button incision to heal. This is common I'm told and I tend to agree. My CA 125 went up to the 5200 range before I could heal enough and begin chemo. My surgeon left in my spleen and said, it may have to come out later. I'm glad he made that decision...even if it means I may have to have another surgery. I may be able to keep it. There were cysts and loads of scarring from the surgery at age 16 and the hysterectomy. The surgeon had his work to do. He told my husband that it did not look good. But, I was in high spirits and ready to take on whatever I had to undergo in order to stop this cancer without a name.

The pathologist still had trouble with the tumor which weighed some 12+ ounces and was the size of Oahu. He eventually found some fallopian tube and some part of an ovary. These had not been removed 8 years before, when my surgeon then said, "What did you do with your other ovary? I couldn't find it." Well, it was there all along and there went my hoping to avoid cancer, I couldn't and didn't. What was interesting is the tumor was necrotic, which means it was dying, probably because it had outgrown it's blood supply. I wonder what would have happened if it had died completely. Would the body reabsorb something that large? Would it go into peritonitis? All sorts of things crossed my mind.

I began chemo in Dec. of 2002 and am now at the 5th cycle, with one more to go. My CA 125 has come down to 1100. I'm still amazed that I believed 3500 was the top and it was really a measly 35 top. It is my chemo-brain that clouds and confuses me. Although, I was functional at the time, I didn't consider myself next to death's door when I first saw my oncologist. However, with CA 125 numbers like that it is easy to use those alone and say...whoops, she'd better get her affairs in order. They gave me a Stage IIIovc classification. I receive anti-nausea meds before each treatment, and have neulastra and procrit shots. My blood tests are indicators and so far the chemo is doing exactly what it is supposed to do--kill everything in sight...red and white alike.

I'm lucky because I haven't been sick. Although I have to cope with being awake most of the night (steroids)and that food tastes terrible and who ever would have thought that our sweet well-water would taste awful? So far chocolate milkshakes are my only treat that taste the way they ought to. Am I making light of all this? No. This is the way my mind works. I made peace with myself the first time I heard the word, Cancer. Whatever happens will happen, but I intend to give it my best and to continue to remain positive about whatever else I may have to endure.

I think every woman on this page is a hero and courageous beyond belief. That we continue to cope and survive is phenomenal indeed. That I continue to survive and plan on many good years ahead, is not denial, but optimism.

The one thing I struggle with is the awful notion that the CA 125 was not correct in my case. Based on the outrageously high numbers, you'd think I'd surely be a goner by now. My on-line reading on CA 125 seems to say that it has a false-positive value as well as being a cancer marker. Until we see the after-chemo scan of my abdominal area, we won't know if the leisons have gone (that would indicate they were cancerous), or they are still there (indicating they are either cysts, leisons, or cancer spots that haven't gone away)or if some have and some haven't and some have grown we won't know (for certain) what type of cancer I have had, if it is cancer at all. If the CA 125 marker were 90% accurate, then I'd accept the diagnosis of ovarian cancer. But, why am I still here with numbers in the 5000-4000 range and could the CA 125 be reading "cysts" instead?

Please don't misinterpert what I have said. It just is difficult to pin my hopes and fears on a test, CA 125, that can give a false-positive, false negative, and a cancer marker all at once. Which of the three do I believe? Look at a copy of your CA 125 and you'll see that even the laboratory takes boths stances: ...this may be a cancer indicator and it may not be a cancer indicator.

Although it has been 10 years since my mother died of ovarian cancer, the illness impacts me every day. I am ever fearful that genetics and heredity may bring ovarian cancer my way. I worry that there is no really accurate early detection out there for me and women like me. But I am grateful for and encouraged by the women who are living-yes living with ovarian cancer and defying the odds. They are heroes and champions and poster girls for those of us who are fearful. I have met so many wonderful women who are fighting and making a difference since I wrote my book, Still With Me, on my mother's battle with ovarian cancer. I think I am doing what I do now because I need to be my mother's voice in this fight that we are all in. I just hope that all of the dear women who are living and thriving and fighting know that they give are the standard bearers for the rest of us, who hope and pray and advocate and believe. I see my mother's eyes in yours. Thank you.

Andrea King Collier
Author of Still With Me
Simon and Schuster
April, 2003

Web Page: www.andreacollier.com

My monthly cycle had been out of whack for a long time. Instead of a one week per month cycle, it was three weeks with only one week off each month. This went on for almost a year. My gyn did a pap, tv ultrasound and endometrial biopsy -- to no avail. There was bloating, but I was never sent to get a CA125.

In late February 1999, I had severe abdominal pain and nausea. I went to the ER. After numerous tests, they found fluid in the left pelvic region and put in a catheter to drain it. After one week they sent me home. The gyn felt it was not gyn related, but rather diverticulitis. I underwent a colonoscopy, which only discovered a tiny polyp (which was removed). I felt the doctors knew what they were talking about and went home to go on with my daily routine.

In mid-May, the severe pain and nausea returned. At the ER, after numerous tests over approx 24 hours, they found the fluid had returned and doubled, my wbc was more than double what it should be and on exam, they felt a mass in the left pelvic area. When antibiotics and pain medication did not appear to clear up the problem, exploratory surgery was scheduled. During the surgery, a tumor was found on my left ovary. Even at this point, my gyn didn't feel it was cancer, but rather a large cyst. (I'd had ovarian cysts in the past.) The pathologist returned with a diagnosis of cancer. I underwent a total hysterectomy, including removal of the omentum, lymph nodes and the lining of the bladder. There were microscopic cells on the omentum and one lymph node was positive.

After a few days, they started me on a liquid diet. A few hours later, I started getting terribly ill. After more tests were done, a bowel obstruction was found (twisted during the hysterectomy). An NG tube was inserted. Since IVs were constantly blowing in my hands and arms, a central line was put in. The central took three tries before it was a success (causing a lot of pain in the process). One week from the day of the first surgery, I had to undergo a second surgery -- same incision, plus -- to repair the bowel obstruction. I was in the hospital for three weeks. Since I was unable to eat anything with the NG tube, and they saw that my system was deteriorating from a lack of nutrition, they started me on liquid nutrients (via the IV). Wow, so yummy!! ;-(

One day after being released from the hospital, a fluid pocket opened on the incision line. This had to be cleared and packed with gauze every day by a visiting nurse. It took several months to heal as I was undergoing chemotherapy at the time. Chemotherapy causes things to heal a lot slower than normal. I received six treatments of Taxol and Carboplatin. Went to work part-time for about six months and then returned to full-time. My oncologist says "no evidence of disease". Last CA125 was 7.

As a result of this disease, I joined a group that promotes education and awareness of ovca. We gave talks to women (and men) about ovca. We give out brochures. We attend health fairs, conferences, etc. I was selected as a consumer reviewer for the Dept of Defense OVCA Pgm (reviewing ovca research proposals), am a Community Ambassador for the ACS (attending Celebration on the Hill Sept 2002), and am in consideration to be a Stakeholder for the ACS (reviewing research proposals). Our group was awarded a Hero Award from the DE Div of Public Health in the area of preventive services use.

And, the fear of recurrence is constantly in the back of my mind. The statistics are improving, but there is still a LONG way to go!

Virginia Vaughn
President DE Natl Ovarian Cancer Coalition

On June 12, 2002, I had a complete hysterectomy & was diagnosed with ovarian cancer, stage 3C. My tumor was the size of a newborn baby's head & was attached to my colon & attached to the stomach wall. The cancer had not spread to my colon or stomach -- Praise the Lord!! I did have 3 lymph nodes that had a microscopic metasis but my surgeon stated those lymph nodes had been removed & it was my understanding that he said because the cancer did not go to the peri-aortic area that was very good. My chemo began 2 weeks after my surgery. I have always had my yearly check-ups & had just had my pap smear on 1/7/02 & everything was fine. Of course, pap smears do not detect ovarian cancer. I also had gall bladder surgery in October '01 & everything was fine & had a routine colonoscopy in December '01 & everything was fine. I was having a lot of bladder infections (4 between January '02 & May '02). I was not sick with them but going to the bathroom every 5 minutes. I had been on 4 antibiotics & finally my doctor did a sonogram that revealed a mass. He then scheduled me for an abdominal cat scan @ local hospital that same day & that revealed a large mass on one or both ovaries. I was then scheduled to meet with my GYN the following morning for further testing. My GYN did a transvaginal sonogram & a CA125 test. Of course the transvaginal confirmed a very large mass on both ovaries & results of the CA125 test was 525. My GYN scheduled an appointment with GYN Oncologist 6/4/02 (my 31st wedding anni I'm 51 years old and have 2 wonderful grown children. Our 2nd grandchild is due on 3/7/03. I know God blessed me thru my surgery & thru my chemo. I chose a clinical trial & will be scheduled for follow-up every 3 months for 2 years. I had a bone scan just this week & it came back normal. After my 2 years of cancer free, I will be seen every 6 months up to five year anniversary date of my cancer diagnosis. More research needs to be done for OVCA. Testing procedures need to be done to detect OVCA at the early stage before it is too late. Public awareness needs to be available. So many of the symptoms are so common --- I attributed mine to getting older. I feel good & will be anxious to have my next CA125 in April. This will be the first one since my chemo ended in December & my last appointment with oncologist in January. I take one day at a time. Yes, I am scared. I have so much support from my husband, daughter, son & son-in-law. I pray a lot & ask for prayers. Because of the stage I was diagnosed, I will have a 65% chance of cancer returning.

I know God will take care of me. Phil:4: 6 & 7

Last september,just one week after her 64th birthday, my mother was diagnosed with mmmt ovarian cancer stage IIIc. Since then she has had three cycles of chemotherapy. Last monday she had a ct scan. We will know the results of the test on february 24th. I am hoping and praying that what she has gone through the last few months is not in vain. She has such a strong desire to live. We want this nightmare to be over soon.

After reading all of the stories, I actually feel kind of lucky. I had just not felt good for about a year prior to my diagnosis. Within that year, I was treated for several sinus infections, bronchitis, and a urinary tract infection. Then I began getting terrible indigestion, along with minor abdominal pain. I again went to the doctor, and he put me on medication for acid reflux. I was on the medicine for about a month, and it was not easing the indigestion at all. I felt constantly full, could hardly button my jeans anymore, and lots of gas. Then one night while lying in bed, I felt a very large, hard lump in my lower abdomen. I asked my husband to feel it. He immediately said, "go to the doctor". I went the next day and was immediately sent to the hospital for a CT scan. Two days later I received a call from the doctor advising I should immediately see my gynecologist for an ultrasound because there was definitely a pelvic mass. I had the ultrasound and was referred to a gynecological oncologist. I was so scared! I lost my dad to bone cancer just 2 years prior and had to watch him go through so much pain. After much discussion between the doctor, my husband, and myself, I was in the hospital a couple weeks later (May 20, 2002) where I had a total hysterectomy (removed my uterus, fallopian tubes and ovaries) and an appendectomy. They had removed a tumor the size of a grapefruit from my right ovary. A few days later I was told I had borderline ovarian cancer (which means low malignancy) and that staging had been performed and it appeared the cancer had not spread. Thank God for that! I was told no further treatment was necessary. I see the oncologist every 3 months for CA-125 testing and gynecological exams. It's been 8 months and so far so good! Even though my results were so good, there is not a day that goes by where I don't fear the cancer will return with a vengeance. Some days the feeling overwhelms me. But after reading these stores, I feel inspired to live each day to the fullest with a more positive attitude - I truly am lucky! God bless all of you.

We are terribly sad to let our readers know that Keiko died on January 11, 2003 at the age of 38. She leaves behind two young children and her husband Jeff. Messages posted to the MPSC discussion board follow her story.

I am 36 years old, and I was diagnosed in April of 2000 with Stage IIIC Micropapillary Serous Carcinoma. I have a pretty incredible story to tell.

I had absolutely no symptoms, and the cancer was diagnosed during an unexpected C-section that delivered a perfectly healthy 8-pound baby girl! My pregnancy was wonderful. I am a fitness instructor, teaching 10-12 classes a week. I taught all the way up until labor- my water broke in the middle of my kickboxing class! There were alot of opportunites to discover the cancer, as I had regular sonograms. At the last one, the radiologist told me she saw a fibroid tumor, but that they usually go away after pregnancy. I also had two highly abnormal pap smears during my pregnancy. My OB/GYN looked at my cervix under a microscope, and it looked normal. He said that a biopsy during pregnancy could be risky, so we decided to wait until after the baby was born (which I now thank God I did). My labor did not progress normally. My water broke but I had no pain or contractions (totally different from my first labor). My cervix was dilated at 9 centimeters and they gave me Pitocin to induce contractions- still nothing. The baby ascended back up the pelvis, and my cervix closed completely shut. The doctors and nurses were stunned. The baby was being monitored and was doing great. A C-section was the next option. I fought hard because I did not want one, but finally gave in after 9 hours. Thanks to God, my little guardian angel saved my life. If I had had a vaginal delivery, they would have never seen the Ovarian Cancer growing inside of me.

I went through six treatments of Carbo/Taxol, and second-look surgery revealed disease progression. I am now on my 7th treatment of DOXIL, and the CT scan showed no progress. After networking and researching on this rare form of Ovarian Cancer, I found that it is slow-dividing, thus non-responsive to chemo, and very persistent. I am looking for a new oncologist, as my current one wants me on DOXIL until "the end". So, "the end" is here- the end of our doctor/patient relationship!!! I am looking for some clinical trials, and praying every day for another miracle!

A picture of me and some of my wonderful and supportive students — I couldn't have done it without them!


Messages Posted to the MPSC Discussion Board


She was an amazing person and she will be missed by all of us on the board who admired her courage and her spunk.
Our prayers go out to her family! --Sean Patrick

Keiko's story made me feel as if I knew her. Her death hurts. It hurts because we have lost a vibrant mother and friend; we have lost a spirit who reached out to others. If, by adding my story as Keiko did, I can touch someone else in a positive way, then I shall add my story. It is my hope and prayer that angels here on earth will mother Keiko's children as she would wish. --Starla

Keiko touched the lives of everyone she met. Don't ever give up, keep fighting, kicking, biting, screaming - that was Keiko! When you are faced with something that you cannot change, you have a choice! That was the Keiko I knew, loved, respected and will miss every day of my life. Cancer has taken alot of things from me, but cancer has given me one thing that I wouldn't give up for anything and that was the friendship that I found with Keiko. I love you Keiko Shimizu Walker!!!! Now someone has posted a thought about a fund for the children. I think that this is a great idea. Anyone interested in setting something up, please contact me via email and I will get the ball rolling if there is enough support for such an idea. That would be an honor for me to do. Brandon and Nicole are absolutely beautiful and Keiko worshiped them. This would make her very happy. --Linda Sharp

How sad to hear about Keiko, it sounds like she gave everything she had to fight her disease. I am very sorry for her family's loss and that such a wonderful woman was taken too soon. My sympathy goes out to her husband, children and family. --Katie

I think it's a nice idea to consider Keiko's children. I do know that Keiko requested, in lieu of flowers, that donations/contributions go to the Ovarian Cancer National Alliance in her honor (Keiko Shimizu Walker) . I have asked the family if there is such a fund for Brandon and Nicole and will post the answer here.
I just wanted to add that Keiko was hopefull right up until the end. Three weeks before she died she had phoned me to ask for my doctor's name and number hoping he may have another therapy for her to try. She had an appointment which she wasn't able to keep. In the summer she wrote in an email that she would go kicking and screaming to her grave and she did. --Marissa

January 21,2003 My wife Pam was diagnosed with late stage ovarian cancer in August 2002.She had two large tumors and her CA-125 was at 240. She had a radical hysterectomy in September. She was hospitalized for 11 days. Her CA-125 was 190 after surgery. She started chemo in late September.Six treatments of Taxol and Carbo,3 weeks apart. The first treatment was horrible as we did not have the knowledge or the proper pain and anti nausea medications on hand to deal with it. Treatments 2 and 3 were a piece of cake, mainly because we knew what to expect. Treatment #4 was a little worse mainly due to the fatigue that set in. Treatment #5 was terrible as she had an allergic reaction to the Carbo and she nearly died in the oncologist's office.The 6th and final infusion was a repeat of the 5th., except not as serious as they were watching her closely.We are now 2 weeks since her final infusion and her CA-125 is at 21. It's now weekly checkups and another catscan in the near future. She has been able to work pretty much fulltime after a 6 week break after the surgery. She basically works and comes home and falls into bed. There are many more small details I have left out, but didn't want to write a book. We would love to hear from anyone who has reached our stage of treatment and let us know what good or bad things have come to pass after chemo. [email protected] Thank-you

Stage IV Ovarian Cancer

My seemingly healthy mother was diagnosed with Stage IV Ovarian Cancer about 8 weeks ago (her pre-op CA 125 level was 3,250 and pre-chemo level was 3,695). Since then, so much has happened. First, she underwent surgery for a complete hysterectomy and debaulking. The surgeon said that the cancer had spread extensively throughout her abdomen, covering all her organs (except for her liver) and her lungs. He said it literally covered everything. Additionally, tumors lined the diaphram and spotted the lungs. As inoperable as that sounds, the surgeon said he was able to remove approx. 95% of the tumors. Although this was initally encouraging, my hopes quickly turned to fear and uncertainty. The pain was (and still is) unbelievable! In an effort to keep this story in chronological order, I need to now tell you about my dad. Four weeks to the day after my mom was diagnosed, my dad was told that his colon cancer that had been in remission for 8 years had now returned in full force. The stress is too much to take for both of them. My parents morn for each other already. My dad has said that he will not worry about his own cancer now, because he wants to concentrate on my mom. As this is not a colon cancer support website, I will focus this story on my mom. I just wanted all readers to fully comprehend what my mom (and the rest of the family) is facing.....Last week my mom had her first treatment of chemotherapy. It is so hard watching her suffer. Especially when I don't know if it is really helping. I don't want her to live the remainder of her life suffering. Right now she is in so much pain. I can't even imagine why it is this bad. Almost daily she talks about how she'd rather die than live like this. I feel like this story is just me rambling. I'm sorry if it seems unorganized, but I have so many thoughts just flowing through my head quicker than I can type! I just need to get some of this out of me so that I won't bust at the seams. I have cried so many times that I wonder how I have any tears left. I want to just call her and listen to her breathe. I tell her constantly how much I love her. I listen to her every word, even the drug induced ones that don't make sense. I just know that someday I will miss having her around to listen to and to listen to me. My pain is magnified by seeing the pain on my children's faces. My mom has been their second mom for years. I am a CPA and work in public accounting. Over the years when I have worked 70+ hour weeks, my mom has basically raised my chilren. She comes to my house first thing in the morning and takes care of them all day, whether it be to get them off to school during the school year or to play with them in the summer. They love her so deeply. Because this was such an abrupt event, the children are confused. Cancer is no different than a cold in a child's mind. They don't understand why grandma can't come over any more. My two older children are beginning to comprehend it some. We have taken them to see her and they know that she looks bad. They know that she is not well. One of my girls asked me if grandma was going to die soon. They cry each night for grandma to come play with them again. For those of you that have continued to read this story, thank you! I appreciate your attention. I'm not certain why I wrote all this. I know that there is no magical words that anyone can say to me that will erase any of the pain that's in my heart. BUT, I would be grateful to anyone who might try. God bless all of you that are suffering due to this horrible disease! Keep my family in your prayers, because my mom's battle is far from over and my dad's battle has just begun!

Im a 35 yr old single male. My mother died on june 9 2002. Two days after my birthday. As I'm writing so many feelings go through me. Mostly anger. It makes me angry that this has to happen to us. Our beloved mothers, sisters, dauthers. I held my mothers hand as she passed. She had been in hospice for two weeks. The sadness in her eyes as her doctor basicaly said there is nothing more i can do and spoke about quality of life. She had lived with an illiesotomy another appendage. I also notice that of the testimonys i have read no one has any thing good to say about the care they recieved. That, frankly pisses me off. I miss my mother very much. My father was murderd in 98 right after she was diagnosed with ovarian cancer. I moved in with her and filled the role of a son. No regrets happy and honored i could be the one to carry her.

It was about eight-nine months ago my wife began having terrible menstral cycles with alot of bleeding and clots. Her GP said it was likely the cause of "Fibroids". Many tests were conducted including 5 radioligists visits, but no CA-125 tests. On October 15th 2002, she was finally reffered to a specialist who had some concern to the amount of growth the "Fibroid" had done in 4 months. She was immediately scheduled for surgery and at that time the "Fibroid" was actually a cancer tumour that weighed at least 5 LBS. She is listed as having level III Ovarian Cancer. Two tumours were found during her hysterectomy, one on her bladder, another on her colon (including the one in her ovary). This is very frightening for us at this stage. The oncologist wanted to start chemo right away but we decided not to because there are no MRI's or CAT scan data to conclusively say that the other tumours have indeed taken or moved somwhere else. My wife is on a strict natural diet right now including organic and natural foods.

My story is unlike any other. My story is about a young woman who had at least eight years of documented medical history, a variety of diagnoses, and the laparoscopic discovery of ovarian cancer after thirteen years of suffering. I am that woman. I went from being a healthy athlete, aerobic instructor, and child development specialist... to a bedridden patient of Stage III Ovarian Cancer. Shortly after turning 29, and moving back to the United States after nearly four years of working in Europe, I woke up from a routine laparoscopic procedure on January 26, 1998 to hear; "We now know what is wrong. You have borderline ovarian cancer." What I thought was a conclusive answer to my thirteen years of chronic abdominal and gastrointestinal problems was actually just the beginning of a long battle that lay ahead. Let me take you back to the beginning. At age 16, and in high school, I began experiencing abdominal pain and irregular menstrual cycles. Since I was not sexually active, several possibilities were ruled out. However, I was on the verge of developing an eating disorder. I was seen by an OB/GYN in Hartford, CT who prescribed oral contraceptives for ovarian cysts and to regulate my cycle. After graduating in 1986, my schooling and employment opportunities kept me moving every 2-3 years. Although the symptoms varied, I always had abdominal pain, and often very excruciating. Every time I moved, I had to tell a new doctor my medical history. And each time I was provided with a new diagnosis. In 1990, I began documenting my problems and getting copies of medical papers whenever possible. I was put on and taken off of oral contraceptives and was given many diagnoses. After moving to Germany in April 1994, my ailments only became worse. With no conclusive answers, I learned to endure pain and suffer in silence. In March of 1995, a German OB/GYN doctor diagnosed me with possible chronic appendicitis and recommended exploratory surgery, I flew back to the United States anticipating surgery, but I was denied surgery and put through a battery of very intrusive testing. This time I was informed I had Irritable Bowel Syndrome (IBS), and prescribed medications to control the muscle spasms. In 1996, while living in Spain, vaginal ultrasounds revealed a mass on one ovary. For the next four months, I was re-tested to rule out ovarian cysts. I was told the problem had resolved itself and was once again put on oral contraceptives. The OB/GYN, this time, was an American military doctor. He was adamant that the surgery was necessary to determine the cause of my ailments. At the conclusion of my contract, I opted not to extend for six additional months and returned back to Connecticut, Thanksgiving of 1997. It was one of the best decisions I have ever made. In December of that year, I once again scheduled an appointment with the very same OB/GYN who treated me when I was 16 and denied me surgery in 1995. This time, she was able to reproduce the excruciating pain I had been experiencing and immediately scheduled me for surgery. The day I had longed for came on January 26, 1998. That day changed my life forever. I went to sleep thinking I had Endometriosis or a hernia, but I woke up to "borderline ovarian cancer." and that the outlook was good. I now awaited major surgery. Decisions were being made about my medical status, yet I never had the time to absorb two words...ovarian cancer. On February 17, 1998, I again went to sleep believing I was on the way to healing. Instead, I woke up to learn that the cancer was more aggressive than initially thought and there was a potential I would be returning for a third surgery. I spent the next week trying to recover in the hospital and was on the verge of dehydration and malnutrition. My recovery was very difficult, and only made my battle that much harder. A six-week bed rest followed as my journey back to a healthy recovery began. Six five-hour cycles of very aggressive chemotherapy, which included a cocktail of Taxol and Carboplatin as well as intermittent injections of Neupogen and Epogen, killed the bad and the good. I was left week, exhausted, and many times sick. It was an "outer body experience" that kept me fighting. And again, I am taking oral contraceptives -- a known preventative of ovarian cancer. I am now "cancer free" and have been since September 9, 1998. Throughout my ordeal, I continued to teach aerobics and began working full-time in July of 1998. I have since taken my tragedy and turned it into something positive. On June 7, 1999 I established R.O.C.C.S. (Research for Ovarian Cancer and Continued Survival). It is a non-profit tax-exempt charity dedicated to educating women about ovarian cancer and raising money for education and public awareness. On September 9, 1999, I celebrated my one-year anniversary of being "cancer free" with the First Annual Fundraiser Dinner and Silent Auction for R.O.C.C.S. I have since been interviewed by two Connecticut radio stations (WDRC-AM, WPLR) and by the local ABC affiliate (WTNH-Channel 8). I have also been featured in a health magazine for the Hospital for Saint Rayfield's, was the "Spotlight Member" in the January/February 2000 edition of American Fitness Magazine, and had a feature story written about my plight in WOMEN, a Connecticut magazine. In addition, I was interviewed by a Connecticut hometown newspaper, which was subsequently featured in several other town papers in that region. I also was asked to share my story with pharmaceutical sales representatives of Smithkline Beechum in November 2000. I continue to tell my story as an avenue for getting awareness about ovarian cancer into the public. In November 2000, I moved to Mississippi to be with my then fiancé (now husband) and continued my advocacy efforts. In January 2001, a chapter was registered in MS, while the headquarters remain in CT. The organization has produced and distributed information pamphlets about R.O.C.C.S. and ovarian cancer to various medical facilities in CT. During the Ovarian Cancer conference in Indiana September 2001, the local Indiana paper, the Indianapolis Star, interviewed me. That interview was read by producers of the Lifetime TV show Speaking of Women's Health and provided me with another opportunity to speak publicly about ovarian cancer. In November 2001, I returned to CT to film a segment for the show with my GYN/ONC and Board of Directors. It will be aired on Saturday, November 2nd 2002. Finally, on Monday, April 29, 2002, I was again featured on the local ABC news affiliate in MS prior to the showing of the Gilda Radner movie. The interview was re-broadcast on the news the following morning. Nearly 3 1/2 years later post chemotherapy, the unexpected happened. I learned I was pregnant. Unfortunately, the being growing inside of me lost its life after 3 months. I hope that we will soon be able to have another miracle of life for all those who have suffered, survived, and past away from this horrid disease. After nearly four years of being cancer-free, I am looking at my options to determine if I am having a recurrence and the possibility of losing my fertility. It's a battle I sadly must continue to fight. My motto is as follows: For every battle, there is an ending. For every ending, there is a beginning. For every beginning, there is success. When we have success, this battle will end. It is with the hopes of my story that no other woman will have to suffer like I have. And that with the help of volunteers, friends and family members, my motto will be achieved. -- Amy Chaiklin, Founder of R.O.C.C.S.

This story is about my mother and the battle she bravely fought with this disease, ovarian cancer. Her initial diagnosis came at the end of September 2002. Her symptoms were bloating, irritable bowel symptoms, loss of appetite, not uncommon symptoms. However, testing immediately showed there were tumors on the ovary and she was admitted to Johns Hopkins under the care of a wonderful surgeon, Dr. Del Carmen. Mom's surgery was very extensive and Stage 3C ovarian cancer was diagnosed. I am telling this story because my mother fought this cancer as hard as she possibly could. However...her battle came to an end only 3 1/2 short weeks later. I know that this is not a happy ending but the story of her fight is a story I must tell. After surgery, she had pulmonary embolisms which set her back. Because of the extent of the colon that was removed, she developed an ileus which caused her to be unable to keep food down and a gastric tube was reinserted making her nourishment severely limited. Because of her "good health" otherwise, Mom was eligible to enter a clinical trial for her chemo. The arm of the trial that she was put in utilized Topatecan and Carboplatin in the initial 4 treatments, Carboplatin and Taxol in the final 4 treatments. Mom had her first round of chemo on October 23. On October 28, she went into septic shock with a severe infection. Her counts were in the danger zone and she had no defenses to fall back on. Her lungs became filled with fluid and she was solely dependent on oxygen. Things went from bad to worse and the doctors decided she needed to be put on the ventilator. My mother chose through her living will not to go down that road. On my three hour ride to get to the hospital before she died, I prayed to God to just give her breath until I could say goodbye and tell her of my deep love and thankfulness for all that she has been to me, a wonderful mother, a loving grandmother, and my best friend. God did give her breath until all of her daughters and husband gathered around her bed. We prayed with her, cried our tears and held her hand. Within 10 minutes, her last breath was taken and she was gone from our lives....It all happened so quickly from diagnosis to death.

There is a message of hope that I want to send to all who listen. My mother fought this battle with all that she had. But in her final day here on this earth, she knew that her battle was ended and God was telling her it was alright to stop fighting and come home to heaven where she would be free from all suffering and pain. The only way we are getting through is to know without a doubt that our mom is in heaven, rejoicing with the angels, playing the piano in the way that only she could, and waiting for us to join her there. The pain of loss is so hard to bear and we miss her joyful spirit, beautiful smile, and loving arms. Cancer took her from us but God doesn't always choose this path. He will allow many of you to survive because he still has a job for you on earth. I pray for those who are fighting this terrible cancer and for their families who suffer alongside them.

The date today is 23/10/02 and tomorrow is the scariest day of my life. i'm only 16 years old and in the last 6 months i've had an ovarian cyst removed and appendix while i was pregnant, of course this resulted in me losing the baby at 12 1/2 weeks. i feel so sorry for my boyfriend sometimes he's so worried about me he's actually sick. he cares so much for me. soon after i noticed a hard lump down below and i was losing weight dramatically then i started getting severe nausea every day and constipation and abdominal cramps. i didn't tell anyone for weeks because i didn't realize all the women in my family have had problems with their ovaries on mum and dad's side so i started to get scared when mum mentioned it one day. tomorrow i'm going to the doctors to get a series of tests. i'm far too young for this i'm so scared. if anyone can give me any advice please email me at [email protected]
thanx for your time

My mother was diagnosed with stage 3 ovarian cancer in Dec of 1998, just about 5 years after we had lost my aunt to the same disease. Needless to say, we were more than devastated. She underwent surgery and 6 rounds of chemo (taxol and carboplatin). I'm writing today (9/27/02), to happily announce that we just came back from her reg 6 mo. check-up and her scans and blood work were once again normal. I'm writing this because when we first got her diagnosis everything I read seemed so bleak that it was a struggle to keep up hope. Although we are all now -and will surely always be- cautiously optimistic about her staying in remission (with an emphasis on cautiously, we should all be, as we all know this horrible beast sneaks up with no warning or signs), I feel that the angels at Dana Farber and all the wonderful support and prayers we received have helped keep my mom in good health. So remember to have hope, there ARE people surviving this, don't fixate on statistics, fixate on hope and love.

My prayers go out to you all.

God Bless

Where to begin? My mother went into her GYN for an exam after having post-menopausal bleeding at the age of 62. He gave her a pelvic exam and recommended a hysterectomy. He said that she didn't have any problems as of yet, but that the bleeding was a sign that it could lead to cancer or other problems. She had surgery two weeks later, June 18th 2002. After surgery, the doctor came to us and explained that she had a mass on the upper side of the left ovary. Turned out it was benign. Two weeks later, she went for a follow-up visit to her doctor. At this point, my father wanted the results of the 2nd path report. The doctor responded that he was consulting with other doctors. He never mentioned the word malignant. Two more weeks passed. My mother went in for another follow up visit. This time the doctor mentioned that there may be a possibility of cancer. Not to worry though. It was a very treatable kind of ovarian cancer. He called it a granulosa-theca cell tumor. He gave my parents the names of two Oncologists; after visiting with both she was scheduled for another surgery. On August 13, 2002 she had exploratory surgery. This, we were told, was to stage the cancer and determine the best form of treatment. The oncologist was concerned that since the initial path report was benign, that the washing wasn't proper, and that there may be other cancer sites. He was right. My mother has now been staged at 3b. She had microscopic sightings on her bowel, bladder, perineal area. None on her nodes or omentum which we were told is a good sign. We are now at Sept 17th. My mother starts her chemo treatment on Sept 23rd. We are told that this form of ovarian cancer (granulosa cell tumor) is a less aggressive form and is treatable. They are giving her odds of 50/60% chance of remission with no recurrence. I'm still trying to figure out what all this means. If there is anyone out there who has had or knows of someone who has had this form of cancer, any information would be appreciated. Thanks for reading, Rozanne

I am writing this on behalf of my mother, a 7-year survivor. It was at about 3 a.m. on March 18, 1995 when my father woke me up because mom had stomach pain. The next day was the first day we found out it was ovarian cancer rather than stomach pains which had been the misdiagnosis we had been told all along. Mom was between 2nd and 3rd stage. Surgery to remove ovaries and lymph nodes was performed on the 20th. The prognosis was 6 mos to a year. She received chemotherapy. Luckily she responded exceptionally well. She passed 5 year threshold in terms of survival/remission. Mom was 62 at the time of initial diagnosis. Also she had a series of non-related surgeries. Under the circumstances, she has beaten the odds. Nowadays, I see many around me inflicted with various types of cancer. Unfortunately, almost all have surrendered to the disease. Now I am truly amazed as to how my mother fought her disease and counting my blessings.

My story starts on March, 1999 when I went into the hospital to have my gall bladder removed. I had been experiencing pain and the x-rays revealed stones in my gall bladder. An ultra sound also showed small spots on my liver, which they determined to be small blood vessels (hemangiomas). After the surgery, I took a long time to heal. Most people reported that they were back to work within 7-10 days, it took me a month to get back on my feet. All the time I was complaining about fatigue and upset stomach. I was told it was probably a result of my surgery. I wasn't feeling better. I was always tired, had constant heartburn and stomach cramps. It got so bad that I went back to the doctor several times in the months that followed and he recommended that I take something to bind me (I can't recall the name of it, an over-the-counter anti-diarrhea powder). I took it, but it made me constipated with bouts of diarrhea. I kept going back to the doctor with the same complaints, even asked him to check my liver again. I was told that it was probably stress related and to keep taking the powder. Everytime I ate, I got diarrhea almost immediately after. My stomach bloated. I thought that I had a urinary tract infection. All the classic symptons of ovca. I remember being so sick at work and depressed and fatigued around November, 1999. I was so stressed out at work. At the time I was a customer service manager. I never had time to go back to the doctor. I was expected to be on call 24 X 7. I kept saying, please God, give me something to keep me out for a few weeks so I can recharge. Well guys, be careful what you wish for. On Dec 8, 1999, I went to my ob/gyn, paid out of pocket since he wasn't covered by my HMO. I was diagnosed with stage 3C ovarian. Just think, all the times I prayed to hit the lottery, this prayer he heard. I went back to my primary care physician (I prefer to call him Dr Death) He told me I had suspicious spots on my liver (HELL-O !!!!) and that I had ovarian cancer. He forgot about the original liver spots first detected in March and never bothered to read my file before meeting with me. When I was looking for hope regarding treatment, he reminded me of Gilda, how she couldn't be helped. The only good thing Dr Death did for me was to refer me to a wonderful group of specialists at Lutheran General Hospital, Park Ridge, IL. I had my surgery, Dec 20th, followed by 10 rounds of taxol/carbo and a SLS. My pre-surgery CA125 was up around 400, dropped to 90 after the first round of chemo and then to 12 after my second round. It stayed in single digits (with one or two exceptions when it went up to 12) while I stayed on chemo. I has a SLS in July, 2000 and then 4 more rounds of taxol, intraperitoneally. The second look was negative. I have been in remission since October, 2000. My last CA125 went from 10 to 12. My new philosophy on life is that nothing waits. Im going to be married to a wonderful man this Oct 5th, in Las Vegas (we have been together since 1995). In Dec, 1999 I thought I was going to die..that there was no hope. I was consumed with this thought. Today, I'm planning a wedding and a life with a wonderful man. By the way, I lost that horrible job, one of the happiest days of my life. I am now working part-time and on disability (that's another story). But I no longer define myself by my career-that is a gift this cancer experience has given me. Before cancer, my life was work, work, work. Today I cherish the time spent with my kids, man, friends, family, or by myself. I even take time to read now, what a concept!! For those of you who are new, don't give up hope. Insist you have further tests when your body tells you something is wrong and remember to breathe. Let's beat this beast together.

I am writing as the husband of an ovarian cancer patient, hoping that an important lesson that my wife and I learned may be of value to others.

My wife, Cathy, 53, has a history of cancer. Her mother died of breast cancer at the age of 32, and my wife had colorectal cancer at the early age of 38. Fortunately, surgery alone was able to take care of the one tumor, sparing her the effects of chemotherapy and radiation.

In December of 2000, Cathy noticed that her legs were aching and tiring quickly; my mother, 81 at the time, could last longer when shopping. Cathy was not overweight and used a Nordic Track exerciser regularly. Soon she noticed that her left leg was swelling slightly. We immediately went to the doctor and a CAT scan was performed, but nothing turned up. Other tests also revealed nothing, and the conclusion was drawn that the swelling was lymphedema caused by old scar tissue from the abdominal surgery she had 16 years ago! We found that hard to believe and got numerous more tests and opinions, only to come back to the same place.

The lymphedema spread to her abdomen and other leg, causing swelling there as well. Finally, about a year later, a CAT Scan finally revealed a tumor, and a biopsy determined that it was malignant. Further testing revealed she was in Stage III.

At about the same time, we learned through reading a book on cancer treatments, that there is a blood test called AMAS (Anti-Malignan Antibody in Serum), that will reveal the presence of cancer in the body, sometimes as much as 24 months PRIOR to clinical evaluation (such as a CAT scan), with great accuracy. We were never advised to have this blood test performed, and found that many doctors, including oncologists, do not know of the test. We believe that had we known about this test earlier, we would have had a much earlier diagnosis, making the disease much easier to treat. It is now August, and she is going to begin chemotherapy next week (Taxol and Carboplatinum), and only time will tell the results. The treatment would undoubtedly have been more effective a year ago, when the symptoms were first beginning to reveal the presence of cancer.

Unfortunately, we did not know about the AMAS test in time. Hopefully, others will learn the lesson from us and have earlier detection of this deadly disease. To find more information about the AMAS test, you can type AMAS into a search engine or go to www.amascancertest.com The laboratory that does the test is located near Boston, Mass., and has a toll-free number: 1-800-9CATEST

Please feel free to contact us regarding our experience with the ovarian cancer or the AMAS blood test. [email protected]

In August 2001, I had an appointment w/my ob/gyn for my yearly checkup. I returned on 8/13 for a transvaginal ultrasound. She asked that I step into her office after the procedure and her words were, "I see a mass on your ovary and I'm suspicious." I thought my life was over. I've racked my brain asking what did I miss. The only characteristic I remember is a soreness/tenderness in my right pelvic area, something I even forgot to mention when I went for the original checkup. On 8/27/01, I had a total hysterectomy and was diagnosed with epithellial ovarian cancer, papillary serous carcinoma, stage IIIC, grade III. On 9/12/01, I started round 1 of six rounds of taxol/carboplatin. I finished my last round on 12/27/01 and had SLS on 2/13/02. Everything came out clear in the SLS and am currently on a maintenance program of carbo only and receive it every other month. I've completed 3 rounds of the carbo treatment. Here it is one year later and I'm learning more all the time. I'm currently 55 years old and so thankful for the little things in life. My family and friends have been an absolute lifesaver and I will be forever grateful to them.

I am 24, and was recently diagnosed with stage 1a Ovarian Cancer, I suppose I am very lucky for that much. I have always been heavy-set, seems to run in the family. Over the past couple of years I have put on quite a bit of weight in my stomach area. I have always been pear shaped, and I would have thought this to be odd except that everyone else in my family is apple shaped...just thought those good old family genes were begining to kick in I suppose. Always being ashamed of my weight, even among other heavy-set people, I tended to wear loose clothing and hide my weight as much as possible. I first noticed that I was putting on weight a couple of years ago, and also that my stomach was hard and uncomfortable to sleep on. I went to a gynecologist for my regular appointment and she asked me if anyone had ever talked to me about fibrosis. I told her that no one ever had, and she dropped the subject. I scheduled an appointment with my primary care physician to ask his opinion about what the gynecologist had said. He "informed" me that it was just muscle and that I should not worry about it. As I put on more and more weight over the next couple of years I continued to hide it, trusting my doctor's opinion that it was nothing to concern me. During the month of May 2002 I began to have quite a few persistent health problems (sinus infections, bronchitis, pnemonia) and they would not go away no matter what antibiotics they put me on. Worse yet the weight gain was increasing even though I was hardly eating anything from being sick for so long. I went in to see my doctor yet again, and this time my mother insisted on coming with me. He seemed confused about what could be causing my poor health, and while he was making notes my mother mentioned to him that I had been putting on quite a bit of weight in my abdomen. The doctor felt my stomach and scheduled an emergency ultrasound for an hour later. They found a huge tumor that they believed to be attached to an ovary, though it was so large that they could not locate my ovaries to be sure. I went into surgery 3 days later assured by the surgeon that it was most likely benign since cancer does not usually grow so rapidly. 4 days after the surgery, still recovering in the hospital, they got the test results back, and it was cancer. They had removed a tumor roughly the size of a beach ball weighing about 32lbs along with the ovary it was attached to and the fallopian tube. The tests indicate that the cancer did not spread, which I am grateful for. For some reason my body was able to keep the cancer at stage 1a, while making me balloon up to the point where I had stretchmarks that were begining to crack open. Because of the size and frailty of the tumor they were unable to remove it in one piece. They drained over 2 GALLONS!!! out of the tumor. Due to some spillage during the draining process they are going to have me undergo 3 treatments with carbo/taxol 3 weeks apart, just to give me a safety net in case the cancer got into the blood stream. I am hoping for the best, even if I no longer have my thigh length hair. I donated my hair to Locks of Love, an organization which makes hairpieces for children under the age of 18 who are undergoing medical treatments resulting in hair loss. Also I have been trying to locate fundraising info for Ovarian Cancer. Breast Cancer fundraisers are rampant but I have had difficulty finding any for OVCA that are anything other than "send us your money." If you know of any walks, or things that are sold to raise money for the cause I would love to get involved with a local chapter in Sacramento, CA or start one on my own if people have suggestions. Best wishes for you, your friends and family members, Barbara Woodruff [email protected]

Name: Julie
Born: 16 February, 1961
Job: I work in the clerical field
Location: Montana
OvCa Status: Healthy survivor of ovarian cancer since 1989

The Story of My Battle with Ovarian Cancer:

Remember, every day, and every way, you are a miracle, and a force to be reckoned with! (Author Unknown)

Time alone heals nothing ~ only people heal each other. (Author Unknown)

We are each of us angels with only one wing. And we can only fly embracing each other (Luciano De Creschenzo)

To My Fellow Ovarian Cancer Survivors, and Others

My name is Julie Elizabeth Simon. I have survived ovarian cancer since 1989. No one I knew had ever had it -- not any of my family, friends, or coworkers. To the best of my knowledge, I am the first and only one in my family to have contracted ovarian cancer. I was twenty-eight years of age at the time. To contract ovarian cancer at any age, especially someone as young as I was at the time, is rare. To survive it, rarer still. I am healthy now, but the memories of fighting for my life still haunt me. I was a new employee, working in a local factory at the time. As is common with most women who have/had ovarian cancer, my symptoms were extremely vague. No big red flags suggesting the dreaded "C" word ~ cancer. And at that time, having known nothing about ovarian cancer (except that Gilda Radner had died of it 6 months prior to my diagnosis) or any cancer for that matter, I attributed my symptoms to other, more common everyday ailments. I was experiencing a nagging, ever-increasing fatigue that no amount of sleep seemed to help. I thought perhaps it was my new job, which was pretty physically taxing, that was the cause of it. I had been having what I thought were two very uncomfortable episodes of "bad gas," and other vague abdominal discomforts that I attributed to nondescript gastrointestinal problems. Also, I had bled twice between two menstrual cycles, something I'd never done before. My mother actually had suggested this might be early onset of menopause (!), but I almost dismissed that idea since I was only 28. But, what if she was right? After all, she said she'd had an early menopause. But it wasn't until years later, after her death in 1993, that I found out she had been lying about her age ~ she had sliced off 15 years!

When I saw the family doctor, he ordered lower-abdominal/pelvic area sonograms, the results of which revealed two large cysts ~ one attached to each ovary. Also, he discovered my uterus was tilted, and said if I became pregnant, the fetus might not survive past the third month ~ would most likely spontaneously abort, and therefore wanted to correct its position, to enable me to have children. While comparing the sizes of the cysts to fruit, my doctor described them as one being the size of a grapefruit, the other, an orange. Also, in comparing them to a pregnancy, he stated they were comparable to a four month fetus, in their combined size and weight. He told me these type of cysts are normally benign ~ in and of themselves harmless ~ but that as they grow, they would be taking up massive amounts of space in the cavity of my abdomen and begin squeezing and pushing against vital organs. If my organs were to get twisted and tangled around the cysts (a very real and scary possibility), the cysts could strangle them, cutting off blood supply and my organs' ability to function, posing a serious threat to my life. My doctor wanted to get them out of me, so surgery to remove them, and also to reposition my tilted uterus while he had me opened up, was advised, and my doctor scheduled my surgery for Wednesday of the week following the visit. He gave me no indication that it could become an emergency situation.

On Monday of the following week, I woke up with severe pain in my abdomen ~ it was also distended and somewhat hard. I got dressed (whenever I look back on this experience, I can't believe I did this) and walked the three blocks from my house to the factory to work anyway, figuring it would just go away on its own, like the other times it had occurred. About 11:30AM, it got so bad, I had to stop working, call my family, and have someone pick me up and drive me home. This time it was different ~ worse than before, and I was really frightened. My stepdad arrived at the factory to take me home. It felt like an eternity waiting for him to show up. The only standing position I could even remotely be comfortable in was in a bent over stoop ~ it was just too painful to my stomach for me to stand straight, and no one offered me a chair to sit in while I waited. By the time I got home, I could only lay on my back, with my knees bent up. Laying my legs flat made the pain completely intolerable. My mother called our family doctor, who told her to take me to the emergency room of Thorec Hospital. By 7:30PM that night, after a blur of endless hours of pre-op preparations, tests and being told by my doctor that he believed my problem was being caused by one of my cysts twisting just as he had thought they would, I was in the operating room, about to have the first surgery of my life. I was so scared, but had no energy to even experience the physical aspects of fright.

I awoke the next morning overwhelmed with extreme pain, grogginess, and an unexpected rush of raw, uncensored emotions. It may seem irrational, but my very first thought upon awakening was "How dare they ~ how dare they invade me like that! I've been cut open, and things were done inside of me! It hurts, and I'm not the same anymore. Why me??" I felt surgically raped, and nothing and no one could console me for hours. I wanted SO much to scream, but was just too weak ~ all I could manage was a little moan, which only served to frustrate and upset me even more. It wasn't until I was fully out of the anesthetic that my logical and rational cognitive processes returned, and I realized that the surgery was an emergency procedure to remove one of the cysts. It had indeed twisted, creating immense pressure in my abdomen, and it may have been in this twisted position for a while. It was when it moved in one direction or another that I felt the extreme discomfort and pressure. It was also discovered that I had developed peritonitis, which was the cause of the unbearable pain and distention of my abdomen.

On the second day, I was removed from ICU and taken to a regular room. It was then that my doctor told me the whole story of what had been going on inside of me. Not only did I have the two cysts, a tilted uterus, and peritonitis to contend with, but now ovarian cancer was suspected as well. The right cyst (which was the one that twisted, and ruptured too, I later found out), and the ovary it was attached to were sent off to be biopsied. My family and I waited 4 agonizing days for the results, during which my life felt as if it was balancing on a tightrope. When the results were returned, they showed both the cyst and the ovary to be positive for ovarian cancer. The cancer of the ovary was well contained, but my doctor was worried about the ruptured cyst. He thought it might be cancerous too, and there was cause to be concerned about the spread of cancer to other areas of my body. So, early the next morning, my doctor cut me open again, through the same surgery site as the first, and did a second surgery. This time, considerably more would be done than during the first. The first surgery lasted about two and a half hours ~ this second surgery was more than three hours. My doctor performed a laundry list of procedures: radical hysterectomy, bilateral oopherectomy, appendectomy, and omentectomy as well, because a metastasized tumor was found in the omentum. Not surprisingly, the follow-up biopsy results from this surgery showed cancer of the left ovary (well contained) and left cyst (no twisting or rupturing) as well. I remember prior to the second surgery asking if my eggs could be saved, and was told there were no more eggs left to be saved, because the cancer had destroyed them all. I was a virgin still at that time, and this news devastated me, on top of the already shocking news of the cancer and everything else that had gone wrong with me physically. Even the factory added to my misery, by calling me while I was in my hospital bed to tell me I had no job to return to. I was in hospital for 14 days, most of which had been spent recovering in ICU. I remember long hours spent there, looking out the windows at the dreary October rain fall, thinking how the endless drops of water resembled the tears I was crying.

My recovery at home, though no chemotherapy was given, was a year-long process of the deepest depression I'd ever known. Though my mother visited me daily during my hospital stay, it was when I returned home that I became quickly aware I would never be able to talk to her or anyone else in my family about my experience. My family's need for me to "get over it" within their time frame, not mine, made me feel like a nuisance, and only added more to the painful process. I wanted so much to learn more about ovarian cancer ~ it was the enemy in a battle that nearly cost me my life. But my mother thought I was being morbid when I expressed any curiosity about the disease. Having been born in 1929, she was of the "old school." She expected me to be stoic and put it behind me as quickly as possible. This disease destroyed my ovaries, leaving me no hope of conceiving or bearing children the natural way, which devastated me, for I'd always wanted to experience the joy of having a child grow inside of me, and childbirth. I had lost all of my reproductive organs, my job, my boyfriend, and even my sense of feeling like a woman. Ovarian cancer, like a tornado, tore through my life. In the aftermath, I somehow had to figure out how to put the pieces of my life back together alone, even as I recovered at home, surrounded by family. Consequently, I buried the pain as deeply as I could, and tried, in vain, to keep it covered. Over the years, though, it took its toll on me. Emotionally and physically, it was exhausting to keep up my "I'm OK" front, and it began eventually to wear me down.

I learned the hard way that deep and painful feelings from a traumatic experience cannot be buried indefinitely. Just as sneaky and insidious as the ovarian cancer, was the grief and pain that followed it -- seeping its way into every aspect of my life. Nothing looked, felt, smelled, or tasted the same anymore. My life was not the same anymore. My experience was horrific. No matter how hard I tried, there was no escaping that. I desperately needed to reach out ~ to find others like me with whom I could share my story.

I am grateful to God for life, and though there were times during my experience when I had truly wished the cancer could have finished me off, I am happy to be alive now. The fear that ovarian cancer could return is a constant concern for me, even now, and yet I have hope that I can look forward to many more years of life.

Thank you so much for allowing me to share my story with you, and I hope you can do the same with me and others.

Sincerely, Julie Elizabeth Simon Ovarian Cancer Survivor

Important Note By The Author: My attendance at the Annual Ovarian Cancer Retreat, hosted by Camp Mãk-A-Dream, in Gold Creek, Montana (about halfway between Missoula and Helena), has been the most cathartic experience of my life. Seeing the warm, familiar faces welcoming me in and knowing that in this place, I can openly share my experience with ovarian cancer validates my pain. At this retreat, it's OK to cry about it, OK simply to talk about it. There is no other place I have, and no one else I can turn to for this incredible experience. For information on this, as well as their annual four-day Women's Cancer Retreat, please visit: https://www.campdream.org/adult_retreats.htm

My personal website is: https://hometown.aol.com/julieovca/myhomepage/index.html

P.S. Please show your support! Wear an Ovarian Cancer teal-colored ribbon or teal clothing every September -- the month officially devoted to the cause of Ovarian Cancer. Even better, wear an ovarian cancer teal ribbon daily!!!

Ovarian Cancer -- it whispers, so listen...

Needless to say, after reading some of these women's stories I am still in shock presently. We are at the beginning of this disease if it is actually Cancer!!!
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On May 30 2002 My wife checked in to the emergency room complaining for some time about her stomach and abdomen feeling a lump that we felt may have been a strain or hernia from lifting heavy boxes and furniture. She had been seen previously by doctors who felt that a follow-up appointment would be in order. She was scheduled for July 3rd at Dover Air Force Base. She could not wait and decided to go in to the emergency room for a checkup because of the discomfort and uncertainty she felt. As everyone knows by now Ovarian Cancer will not show-up on a mammogram or pap smear. We did not even consider her to even possibly have Cancer since there is no family history or heritity involved with any type of Cancer. Two hours after being seen The doctor on call dispatched the Doctor from the Base on-call in to see us after a CAT-SCAN was given to my wife. She sat for the better part of two hours explaining what she saw as being a mass in her abdomen the size of a softball that appears to be a tumor. It is not known Scott Whaley

At 46, I retired and moved to Naples with my husband, Paul. We have three grown children and have been married 37 years.

In February 1993, I had a total hysterectomy (including ovaries) to relieve excessive bleeding during menstruation. Pathology indicated that all removed tissue was negative for cancer. I had not begun menopause, and I was 50 years old; after surgery, my gynecologist put me on Hormone Replacement Therapy (HRT). After my cancer surgery, I switched to NHRT (natural hormone replacement therapy…soy, tofu, etc.).

I have always been an extremely healthy individual and take NO medications, only vitamins.

MY OVARIAN CANCER DIAGNOSIS:
In May 1998, I had persistent constipation and a noticeable increase in my abdominal girth. I visited a gastroenterologist. He examined me and ran fecal matter tests and blood tests. These were negative. He indicated that I probably had Irritable Bowel Syndrome (IBS) and prescribed Prilosec®. I asked for further testing.

He had a pelvic X-ray done, and it was negative. He told me I had IBS. I requested further testing. A nuclear liver scan was done and was negative. He told me I had IBS, and his nurse practitioner talked to me at length about IBS and gave me some literature on it. I could not agree with the diagnosis because of my increased girth. (I couldn’t wear any of my clothes that buttoned at the waist.) I requested further testing.

The doctor and nurse practitioner were getting a little frustrated with me. They reluctantly agreed to have a pelvic and abdominal CT-scan done. This test did not reveal a tumor, but it did show (abnormal) fluid in my abdomen. This fluid is called ascites. I had it drained; analysis revealed cancer cells in the fluid.

They still could not tell me where my cancer originated and wanted to refer me to an oncologist.

I was not familiar with any cancer doctors/treatment in the Naples FL area. Since I’m from Michigan and my daughter lives only ten minutes from the University of Michigan Cancer Center, I opted to go there for treatment.

Before I left Naples, I had the gastroenterologist run a series of blood tests to narrow down where the cancer might be. One of those tests was the CA-125 blood test (for Ovarian Cancer). Normal is 0-35; mine was 754. I didn’t see how I could have Ovarian Cancer when I hadn’t had ovaries in many years! That’s when I learned that all women are still at risk, even if they’ve had their ovaries removed, for Primary Peritoneal Cancer. The cells from the ovary and from the peritoneum originate from the same stem cell; even after you’ve had your ovaries removed, you still have cells in your peritoneum that are essentially ovarian in nature.

MY OVARIAN CANCER/PRIMARY PERITONEAL CANCER TREATMENT:
Between June 1998 and June 1999, I had six surgical procedures, six chemotherapy treatments, and 36 Whole Abdominal Radiation (WAR) treatments.

During my initial laparotomy surgery, the U of M gynecologic oncologist removed my omentum (which was caked with tumor) and determined that my cancer had not spread to other organs sufficiently to require they be removed. There were cancer cells attached to the outside of my organs, but these were too small and too numerous to remove surgically. It was determined that I had a STAGE IIIc, Grade 1 cancer.

A few weeks after surgery, I had a port implanted in my arm and began chemotherapy to destroy the cancer cells remaining in my abdomen. After two chemo treatments in Michigan, I returned to Naples and finished my chemo treatments with a medical oncologist. During this time, I had surgery to remove the malfunctioning port from my arm and another surgery to implant a double port in my chest. Chemotherapy treatments were completed in October 1998 and I was pronounced "in remission" with No Evidence of Disease (NED).

I chewed on this for awhile and did some research on my own. I decided to have a Second-Look Surgery (SLS) to determine whether any cancer cells survived the chemotherapy. This procedure is controversial and some gynecologic oncologists do not believe it is worthwhile. However, my Florida gynecologic oncologist agreed that I was a perfect candidate for such a procedure. He did this surgery on me in February 1999. He took many biopsies and abdominal lymph nodes. All were negative for cancer…except two, which revealed microscopic cancer cells.

This doctor suggested two different treatment possibilities for consideration. I flew to Michigan and got a second opinion at U of M…something entirely different than what was recommended to me in Florida. So, I flew to Houston, TX to the M. D. Anderson Cancer Center; I was examined by a gynecologic oncologist, and my case was presented to a panel of seven doctors for their treatment recommendation. They recommended something entirely different! Now I had four different treatment options recommended by three different cancer centers in three different states. What to do, what to do.

I did more research on my own and weighed all my options. I decided to take 36 Whole Abdominal Radiation (WAR) treatments from a radiation oncologist. Those treatments were completed in June 1999, and I have been in remission ever since. Following completion of WAR, I developed a lymphocele in my lower pelvic area that pressed on a nerve feeding my leg and caused great pain; this lymphocele was surgically drained and has not caused any more problems.

MY ACTIVISM:
Shortly after completing my WAR treatments, I decided I just had to do something about the general lack of knowledge about Ovarian Cancer. Having done a lot of reading and research on the subject, I felt that if I had all this information and didn’t share it with other women, then shame on me. I learned all I could about various non-profit organizations pertaining to Ovarian Cancer and decided to form a local Division of the National Ovarian Cancer Coalition in the fall of 1999. In early 2002, we resigned from NOCC and formed the Ovarian Cancer Alliance of Florida-Gulf Coast, a 501(c)3 non-profit corporation. Our efforts are primarily in southwest Florida and our mission is to save women’s lives through Ovarian Cancer awareness and education.

I speak to women’s organizations throughout southwest Florida (and in Michigan when I am vacationing there) about Ovarian Cancer and distribute literature to all attendees. There is no fee for this service, but we do request donations to assist us in printing our literature. We are a non-profit 501(c)3 organization, so donations are tax deductible.

We participate in Health Fairs (at a booth with literature to disseminate to attendees), and I have done several television and radio shows on the subject.

We are also working on a project to print Ovarian Cancer Risks / Symptoms cards for placement in doctors’ offices and to be provided to employers for distribution in paycheck envelopes for their employees.

Our Southwest Florida Division of NOCC has obtained Proclamations declaring September as Ovarian Cancer Awareness Month from the following: City of Naples, Collier County, Lee County, and the State of Florida. We have created a display of these for use at Health Fairs and at our events.

Also, we have created a display of famous women who have had Ovarian Cancer. This will be exhibited at all of our events. We believe this will encourage more women to learn about Ovarian Cancer and increase the possibility of early diagnosis.

Please feel free to call me with any questions.

Carolyn Benivegna
41360 Fox Run Rd., #149
Novi MI 48377
Phone: 248.669.7181
Email: [email protected]

Thank God for this site!!! After searching and searching, I have finally found a site with hope. My sister has stage 2 ovarian cancer. She has started her sessions with chemo (six in all). She's going on the second. She had long hair and it was falling and shedding, so we cut it. Her spirits are very high and good. Better than the family, I might add. I know it will be a journey for us and mostly for her. But I just want to say that this site has warmed my heart and healed it!! Everywhere is was so depressing and I was just hoping there had to be some survial stories.....somewhere. May God or whoever you worship keep all of you safe! Thank you and God Bless!!

CANCER AND MY BODY

I am a 31-year-old female, mother of two. On October 4th, 2001 I was diagnosed with Stage 3C ovarian cancer. I want to tell my story. I have before and after photos* that show my will and determination as a person. I went from being overweight and unmotivated to losing 39lbs and 13.5% body fat in three months on Bill Phillips "Body for Life" program. I really had accomplished something for myself finishing in the top 1,000 out of 700,000 entered. I had a goal mentally and physically and even exceeded what I thought was possible. One year later I started having stomach and pelvic pain, which was diagnosed by my OB-GYN as endometriosis. My doctor decided that I needed to have a hysterectomy and when I had the surgery he found a quarter pound tumor the size of a softball. After my debulking surgery I was told that I had Stage 3C ovarian cancer. I had worked out six days a week to build the strongest body I could and now I have cancer??? I recently (2/28/02) had a second look surgery. I would like to tell my story that you can go from overweight to your dream body then to where I am now with a permanent colostomy, groshong catheter, and no hair. To tell people that you can deal with anything that life throws at you. If I can touch even one life of someone recently diagnosed it would mean the world to me!

Thank you, Allison Jeskey
E-mail: [email protected]

I have spent a large part of my afternoon reading all of the stories on this site, looking for someone like myself or like my Mom. She is a widow living alone in her 99 pound body, quite older than the women profiled in this forum. The events described herein refer to a period of time beginning on May 20, 2002 to June 15, 2002. You see, my mother was recently diagnosed with ovarian cancer. I flew up from Florida to northern Indiana where she lives alone in our family house of 45+ years. I knew something was wrong when she kept complaining of abdominal pains and bloating because she is a stoic woman of 80 who never complains.

The Journey
The day after I arrived, she had scheduled an appointment with her "Primary Provider". My objective was to convince her to refer my Mom to a specialist and order some diagnostic tests. She dispassionately looked at my Mom's distended abdomen and discounted her 3-month urinary infection, but did relent and suggest that we contact a gastroenterologist and wrote a script for an xray and an ultrasound. Why don't doctors give referrals anymore or have their staff set up appointments? It is all so confusing to have these responsibilities on the shoulders of the ailing patient! I talked our way into an appointment with a gastroenterologist two days later, but they explained that not much could be done if the diagnostics weren't available. On the warpath for a radiologist who could perform the ultrasound ASAP. . . She had one by the end of the day. Constant coordination between doctors and labs suddenly becomes your job because they are busy or inefficient or short-staffed. I had filled up an entire legal pad by the end of the first week. . .

First Evidence
I talked a woman at the radiologist's office into reading me the results of Mom's ultrasound over the phone, scrambling to scribble down every word. It was ascites engulfing her pelvic area, spleen, liver, and gallbladder. And there were tumors on both ovaries. We wondered what was more important the tumors or the ascites and how would we manage to pronounce ascities with a long i. . With the gastro appointment for the next day, I knew what to expect, but I wanted to research the implications so that I could ask the right questions. The gastro man was late coming in that morning and once he came into the exam room, he acted as though he were on a timer to dispense with us within 4-5 minutes. He barely examined my Mom, who, by this point had swelling in her legs and feet. I continued to ask him questions as he was trying to leave the room - feeling like a reporter trying to get a quote from a movie star. . . Oh he did write us a script for the CT scan and the paracentisis and bloodwork too. And he suggested that we find a gynecologist.

Looking for Compassion
Mom had never seen a gynecologist in her life. This certainly made it difficult to squeeze our way into a gyny ASAP without a track record. One "women's facility" offered us an appointment in August. . . Finally I talked with a nurse at a gyny facility that couldn't see us and she referred me to Dr. Schwartz. But I wasn't able to get Mom into see him until ten days - too long for me and for her. So I kept pestering and had her medical data sent over so that he could see how important it was for us to come in. We were in within five days and once in the examining room, he performed the most extensive exam that any doctor had provided to date, including a pelvic. His white mop of hair and wrinkled face emerged at the conclusion. As he made his way to the door, he secretly motioned to me to follow, while Mom dressed.

The Conclusion
Sitting across his desk in a leather chair, quaking, I heard him tell me straight out that your mother has ovarian cancer - how much do you want her to know? Everything, I said as I left the room after a few questions to fetch Mom. It had been ten days since I arrived.

The Beginning of the Treatment
Mom was checked into the hospital a few days before her scheduled operation for hyperelementation and also because a scheduled colonospy was stopped cold at the sigmoid and a barium test showed interaction with her colon. Mom handled it all in stride. All the poking, blowing veins that were highly visible, but supposedly thin. The endless cleansing treatments, a pre-op paracenticus, drinking regimens, hoppling to the bathroom with an IV pole we named Trixie.

The Operation
A five-hour, two surgeon operation extracted uterus, ovaries and their appurtenances, fallopian tubes, apron, appendix and about 22 cm of bowel. Thank God that she did not have to have a colostomy - the surgeon, who was part of Dr. Schwartz' team was able to attach the two ends.

The Recovery
I brought Mom home from the hospital one week and five hours after we arrived. She wasn't on solid foods yet, but she was in good shape and I knew she would sleep much better in her own bed, instead of that torture device that seemed to swallow up my Mom in the hospital.

The Future
Mom has a week or two of grace before the chemo starts. The oncologist suggests a course of Paclitaxel and carboplatin, a combo that many of these "Personal Stories" have encountered. I am reading up on them, but I am frustrated because I know that my Mom is different: she's a 99 pound eighty year old. What kind of reaction can I expect? Do I need to be with her 24/7 or just through the first ten days of a chemo treatment?

Contact, if You Want
I am interested in hearing any information about older women with this malady, their successes/failures with chemotherapy (specifically taxel and carbo), any input on care giving, or mother/daughter travails though this malaise. You can contact me at: [email protected]

After an exploratory operation, we were told last year (June 2001) that my mum had ovarian cancer I felt numb - mum had a hysterectomy and two tumours were removed - they had to leave another tumour in (because of possible detrimental effect of removing it). When we were later told she had two types of ovarian cancer (one being aggressive) and less than 5% chance of being cured my world fell apart. Anyhow, we got through the chemotherapy, which ended in November/December, and by the end of December we were told that 'miracle of miracles' my mum reacted positively to chemo, and the tumours had disappeared!!! The best New Year's present we could ever wish for. It is now May 2002 and, unfortunately my mum is still in very much pain - she is currently taking morphine. The doctors are not sure whether there are cancerous cells on her nerves at the base of her back, so are treating her with radiotherapy at present. I just wish the pain would go away for mum - the morphine doesn't seem to work at the moment. We don't know what the long term future is for mum, but we remain hopeful. Does anyone else still suffer from such pain after being told the majority of cancer has gone?

A shock to the system

I awoke on the wednesday at about 5.00am with a terrible pain on my right hand side of my abdomain, felt it and it was rock hard.

I made and appointment with the Doctor for the Thursday morning at 11.00am, I spoke to the Doctor who sent me in to the Fast Trak clinic in Brighton one week later. My husband and I went to the Fast Trak clinic and was asked to have a CA125 test which I have never hear of, then a scan then asked to wait in the waiting room, within 20mins we were recalled and told to come into hospital the next day, Thursday the 30th I went into hospital the next day and had my hysterectomy on the Friday 31st awoke to be told I had Ovarian Cancer stage 111 C, all I could think of was I was going to die and I had a lovely husband and three children 15yrs, 10yrs and 9yrs, who would look after them, I was allocated a side room and the McMillan nurse came to visit which I have always associated with the end a McMillan nurse.

I was sent for chemotherapy (Carboplatin and Taxol)my first one was December 31st New Years Eve just to end the year and start the new one on a good note. After being told all the side affects I was suprised that Chemotherapy was not that bad, ok I had bad days but I was not sick or loss of appetite infact the revese I could not stop eating, now at the end of the chemo I look like a bald budda, I have been advised that I will lose this weight that most of it is through HRT and the steroids I was taking.

I am now at the end of my chemo and await the consultant's views but my CA125 is now 7.3 as opposed to 78 so I am hoping for a good outcome. The one thing with this disease is that the full truth is never given ok you get the statistics that 23% of people survive this but nobody tells you with this result or that result its looking good, nobody has said anything positive to me in the medical profession is this because the outlook is poor or are they all afraid we might sue them, well some of us just want the truth so that we can plan for our families.

This is my story I will write more as I go on into survival which I will do I am now 41yrs and will plan for my 50th.

Joan Mechen Seaford East Sussex.

Extra Ovarian Primary Peritoneal Cancer
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I really didn't feel anything too abnormal! Just a little tenderness around my belly. I had been doing some heavy lifting and just assumed I had a hernia! How I wish! Two & a half weeks later on 2/11/02 I'm getting the diagnosis "Ovarian Cancer"! I felt like all life had been sucked from me! I was not predisposed to this disease and was regular in my yearly paps/mammograms! I have always been healthy and active! The following week I had a complete hysterectomy and removal of the omentum which had a football size tumor attached. The surgeon came in later that evening and said that the ovaries didn't appear to be involved. So what's up with that? Two days later the biopsies came back with the diagnosis of Extra Ovarian Primary Peritoneal Cancer. Seems crazy that you can have ovarian cancer and the ovaries themselves not even involved. I now tell everyone that just because you have had a hysterectomy, you are NOT HOME FREE from this disease! I also believe that ALL WOMEN should have a CA-125 test run at all their yearly pap smear appointments! If men can routinely get a PSA blood test from their physicians, women shouldn't have to argue and push to have a CA-125 run. If this test had been run on me when I went in for my yearly exam, my diagnosis may have been caught in Stage I or II instead of III! I underwent surgery for a complete hysterectomy and my omentum was removed as well because of a large tumor attached. I was so fortunate to have not had other internal organs involved, but it was so close to happening! I recovered for 4 weeks and started chemo treatments of carboplatin/taxofere. My CA-125 count was 611 pre-surgery, 183 2 weeks post-op to 13.4 one month after chemo treatments! Obviously, I am estatic! I'm in my 2nd session of chemo now and I'm not sure how many sessions I will have. I will do what I need to do to survive and beat this disease! I have been following a vegan diet since my diagnosis, as well as cutting out all processed foods, refined sugars, alcohol and caffiene products! I can't say it's the most exciting diet in the world, but if it enhances my chances, so be it. I am also taking multi-vitamins, Vit C, Vit E, Calcium, and CQ-10. I've been feeling pretty good, working 36 hours a week, and other than being tired 2 days after treatment, life is good! I want to look at this opportunity as a second chance! To improve my quality of life and hopefully make a difference for someone else. Everyday I am learning new things and meeting new people - I AM BLESSED! Sue

Hi, I have been reading all of your stories and have been in tears and full of hope. My mom, Monday April 22nd, 2002 was diagnosed with stage IV ovarian cancer. As all of you know, I was in shock and thought nothing like this could ever happen to my mom. She recently had her appendix, ovaries and a large part of her intestines taken out. After the surgery the doctor told us that if she reacted to the chemotherapy positively she would live 2 - 3 years and if not maybe a year. I am in shock myself and scared for her, my dad and me and my family. My mom is the happy pill in our family, full of love, joy and smiles. I love her immensely. Obviously I have just learned of all this so I welcome any help in information and treatments that any of you have. I would like to share another story in a few years as to her recovery and hopeful remission. Thanks for listening, please live in peace. Lee

Year 2001. I have been exercising, and was disturbed that my tummy was just as flabby. I was poking at my fat tummy when I felt that the right side was firmer than the left. The first thought that comes to mind was muscles! I asked my husband to feel it, but he thought it was normal. About a week later as I was walking past the Singapore General Hospital I was drawn to the Polyclinc. Without an appoinment, I asked for a pap smear and a sugar blood test. I was asked when's my last menstration as they only do pap smears two weeks after. I told them it was two weeks ago. When a senior nurse came to give me the pap smear, I told her to check out my "muscle". The nurse obliged and I could tell she was worried upon doing so. She called for a doctor, who

checked me out. I could tell she was worried too. She said I need to see a Gynae. and she called SGH to set up an appointment. There I was given a sonogram. My gynae, Dr Christine Yap told me my ovary is 15cm on the right and the left is 9cm. After that I had Dr. Yap as my surgeon. I got to know Prof. Tay eventually, and I believe I am in good hands. The nurses at the hospital were wonderful. On 1st June I walked to National Cancer Centre, 25 mins. from my home. There I had my treatment. The nurses there are very caring and understanding. Chemotheraphy (Anzatax and Carboplatin) 3 weeks apart x6. CA-125 before surgery 102. After, in the 60s. After the first chemo, double digits. After the third, single digit. I had all the side-effects during chemotheraphy. Eventually I asked for sleeping pills and a medicine for bone pain. It was more tolerable after that. Whenever I am well enough, I will go on the net to look for answers. I started to take supplements and to concentrate on

certain food. My last check up was in January 2002. CA-125 single digit. Since then I have fine tuned my diet. When I felt better I started to go for long walks. My husband decided to buy me a treadmill and since we got it about a month ago, I have been working out for 50 mins a day, 5 times a week. I continue to research on the internet. I borrow books from the library written by survivors. I write to survivors posted on the internet and am

very grateful to all who have written back to me. My next check-up is on the 15th of May 2002. (Today is the 19th of April 2002) Here is my e-mail address: [email protected] Please feel free to contact me.

UPDATE 5/20/2005

4 years ago today I was diagnosed with Stage 3B Ovarian Cancer. You can find my story under Joanna Chan. This is an update.

Today I am healtier than I have ever been. Cancer was a great wake-up call for me. I have completely changed the way I eat, drink, sleep, exercise (none before), breathe, think. A year after my chemotherapy I took up qigong. Within a week my fatigue was gone, and along with it the fear of the cancer coming back. I felt empowered. I still practice it today.

In May 2002 I weigh about 130 lbs, a size 12 going on 14. Today I am 120 lbs, size 10. I drink a lot more, exercise 3 times a week for an hour each time, do stretching and deep breathing throughout the day, sleep 8 hours a day, eat a healthy portion of vegetables and fruits daily, and best of all, am no longer constipated. Frequent flus are a thing of the past.

I feel blessed.

I'm 36 yrs old and my story began in August 2001. I started a diet in April of 2001 and was doing very well. While away one weekend I noticed that when I put a pair of pants on that I needed to where a belt with I couldn't do up the zipper. When I got home that Sunday I measured my waist and it was 6 inches bigger then my last measurement 2 weeks prior. I mentioned it to the diet doctor and he told me that my lower intestine was full of garbage! I went to my family doctor 3 times and he suggested I take anti gas pills. My stomach continued to grow and I demanded an ultrasound, that's when the ascites was found. I had a ct scan done and some of the fluid drained, but both came back with no cancer. An appointment with a gastro specialist was made. My stomach continued to grow and I couldn't take it anymore so I showed up in the doctors office and was finally admitted to the hospital. It was another 2 weeks before the diagnosis. I've got one more round of chemo to go and I'm hoping that I'm in remission I'm glad I found this website as it proves to me that there are survivors out there!! With the lords help and my family's support, I will beat this!!!!

In 1999 I was taking care of my dad who had Parkinson's with dementia and it had become terminal so we were getting some help from hospice but it was a nightmare. couldn't have done it without hospice mind you but it's so hard to see your parent in that confusion and hurt. we had taken care of mom with alzheimer's before that for four years and then came here with dad in 96. i am so glad i had that time with both of them.

after dad died i decided to go up to willits and get a colonic. while he was going through hell all my attention was on him and after he was gone i began to notice my own body. i realized i had been having some digestive problems. while the friendly colonic guy was doing his thing he massaged my stomach a bit and suddenly said, "I'm not a doctor but there is something here that shouldn't be -- I say that cause I have felt a lot of tummies" .. so i scheduled an exam, with my g.p. and he confirmed a grapefruit-sized tumor, ordered an ultrasound and insisted I make an appt with a gynecologist. I asked her if she liked doing surgeries and if she had done a lot of them. yes to both questions so i said okay.

They took out everything including the omentum. First time I ever heard that word. We started carbo/taxol soon after and i started two new jobs at the same time. Seemed to sail through that first chemo. had lots of energy never needed a shot and never had any nausea.

Second look surgery i had at UCSF with a gyn/onc. She found some lymph nodes but they had been killed by the chemo. she worked very hard and long so i felt good about it. she suggested another 6 rounds of chemo though my ca-125 was down to single digits. my oncologist did not agree. i couldn't afford to order it on my own... i felt fine, so i said great. 2002 - i went in for my 6-month checkup and my CA-125 had gone up to 450. I said throw the book at me, give it your best shot. so he is giving me gemzar added to the other stuff... i'm not even sure it seems like there are four different chemos. yesterday i was there for 11 hours. anyway, the next week i just get gemzar and the third week i have off, then we start all over. the plan is to do this for 6 cycles and then have debulking surgery and then 6 more cycles. He says he has been using gemzar for 2 years and so far 100% success with recurring ovarian so I am quite pleased. That's my story. except that i am not working this time and am taking a small amt. of anti-nausea meds and neupogen and procrit shots.

My grandmother was diagnosed with ovarian cancer on August 3, 1984. The doctor estimated how long my grandmother had to live, but little did he know my grandmother was a very strong woman. She was given 1 year to live without chemotherapy, with chemotherapy, she was given 5 years. My grandmother made the choice of losing her hair and feeling sick one day out of every week while taking chemotherapy. After a while my grandmother started to feel sick every day, no matter what. She called the doctor to see if he could figure out what was happening, and he told her to have a CAT scan done. When she had the CAT scan done, the doctor told her that the cancer had spread to her colon and spleen. After a great deal of thinking, my grandmother decided to have her spleen and half of her colon removed. Finally the cancer had metastasized throughout her whole body, and she died on October 10, 2000.

My sister had a baby girl today, mom is a grandmother for the first time. Today, mom also found out that the umpteenth chemo is not working. She no longer has the strength to walk. We all feel death breathing down our necks. On this most joyous day, for my mother to feel such sorrow at the future she will miss, seeing her grandaughter take her first steps - well, I could go on, but what's the point? Mom has been fighting for 3 years; she is starting to give up. She can do whatever she wants, it is her death and she gets to call the shots as to how it will go, to whatever degree she can.

This tragedy overwhelms me. I am so scared to get genetic testing and every vague abdominal discomfort worries me. I hate to think about myself while my mother is dying, it seems so crass. What the hell is causing the overall increase in OVCA? I can't help but think that the general population's increased exposure to toxins must have something to do with it.

Why? How?

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I am 23 (just turned) and I was diagnosed with what I was told is a rare form of ovarian cancer. There is no history of ovarian cancer in my family. Granulousa the good thing is that it is highly treatable. But my first thoughts where great I am going to lose my hair how did this happen I shouldn't have smoked or I am only 23... And Anger but now I just feel kind of numb and what can I do? Whether I worry and cry it won't change anything so why bother... I am also separated from my husband and was fired the day before my surgery to remove the tumor and while I was finding out I had cancer my sister was finding out she was having a baby life vs death is what I think but that is just one more thing to live for. With all of these things I kept looking for the good and I have to admit its frustrating but everytime I tell myself it can't get any worse it does. my family is here for me and for that I can't be more grateful but I can't wait till its all over. I am getting treatment immediately.

4 Days Later
As of right now I do not need Chemo and tomorrow I am having my second surgery in one month to stage the cancer and to have one of my ovaries removed. I am hoping for the best and after some counseling I feel confident that God will take care of things. I am not going to lay down and die...I have too much to live for...

I am Andrew Nigrelli from New York. I am 13 years old. I have a sister who is 16 and my dad. My mother just passed away of ovarian cancer. She survived for two years. She died on Feb 8,2002 at Memorial Sloan Kettering Cancer Center. They say it is the best cancer care anywhere. Well I think it was because the doctors at the hospital gave her two more years to live. And I am very grateful for that. It was very hard leaving school to go to the hospital every so often. All I tried to do in life was to please her but it was pretty hard when she was on antibiotics and all these medicines that made her drowsy. The last few days of her life I did not go to school. I was in the hospital with my mother. She had her eyes rolled in the back of her head, Breathing heavily, and she looked very scary. It was hard to believe that she was actually my mother. Then we found out there is a 10% chance of her living. That's not a lot but if that's all I get that's good enough. We learned about her dying two days before she did go.

Ovarian Cancer does indeed whisper, and we need to learn and share what we know in order to conquer it. I wish I had known as much as I do now before being diagnosed with Stage IIIb in Nov. 2000. In my case, the symptoms were being attributed to a new Arthritis medication I had started.

Except for arthritis, I have always been healthy and do all the usual checkups regularly. But in June 2000 I started getting the symptoms -- always feeling full, stomach and intestinal problems, and finding my skirts and slacks could no longer close although I was hardly eating. Since I had just begun taking Methotrexate, a stronger arthritis medication, I assumed that was the cause. My Rheumatologist assumed the same, so we tried different things - switched dosage, stopped for a while, went from pills to injections, etc., - but the symptoms remained. This went on for about 5 months. I finally decided I couldn't take it anymore and would deal with the arthritis with other medication. In early Nov. I went to my Gynecologist for my 6-month checkup and everything seemed okay. I did not go into great detail about the stomach discomfort, just telling him I was having problems adjusting to the Methotrexate. Perhaps if I had known these symptoms could mean something else, I wold have told him more and he would have been suspicious. But I did not know this -- now I do.

Within a couple of weeks after that, my midsection starting bloating and I had difficulty standing, sitting and sleeping. It was painful and would not go away. My sister-in-law later said she told my brother she thought something was very wrong with me, that I looked awful. The Friday after Thanksgiving I went to see my Gastroenterologist, who said if I didn't feel 100% better by Monday morning to be back there first thing. I went back, he took a sonogram in the office and immediately told me there was a tumor on the ovary and that I'd need surgery and probably chemo. He called my Gynecologist right then and sent me, stunned, straight to his office, where my Gynecologist explained things and helped me make plans for the surgery.

An important issue regarding surgery -- be sure to get a Gynecologic Oncologist to do the surgery! My own Gynecologist told me that he wanted me to have "the very best care" and that's where he was sending me for the surgery. He personally arranged an appointment for me with one of the very best surgeons in the state (luckily right near my home) for the following morning. I had a confirming CAT scan and then the surgery within 2 weeks (Dec. 2000). He had to do a complete hysterectomy and said there was some "residual" which the chemo should take care of. He also had to drain more than 2 liters of fluid from me. I am a small person, so the change was very noticeable. My chemo began just 2 1/2 weeks after my surgery and I had a protocol of Taxol/Carboplatin -- 6 treatments spaced 3 weeks apart. I was told they have great success with this program and that their patients tolerate it fairly well. It wasn't as bad as I thought it might be. My treatment had delays because I had problems with low white [blood cell count].

Ironically, before my surgery, my Dr. told me that Methotrexate is a very mild form of chemo. (The drugstore warnings say it can cause hair loss and my Rheumatologist said it rarely happens. Little did I know what I was in for with the chemo!) They were wondering if my taking it was mildly treating the cancer for a while, but eventually the cancer overwhelmed it and the stronger symptoms came out.

Important lessons: read and learn; listen to your body and question when things aren't right; and if you ever need it, get the best medical care you can. Share what you've learned with friends and family so you can perhaps spare them what you have gone through. Also, discuss possible Osteoporosis, bone density tests and calcium supplements with your doctor, as they are relevant after a cancer-related hysterectomy. I have just found out about that after a year with no hormones to help me. Choose Hope, be optimistic -- it makes a huge difference! Congratulations to all who have made it through -- and faith and courage to all who are just beginning the long road. We can beat it together!

My loving sister Anna has been diagnosed with stage III possibly stage IV ovarian cancer last Wednesday. She is scheduled to have surgery on Jan 29 at 10:00AM in Atlanta. Her tumor is 17cm and grade level of III and the cancer may have already spread to other areas, but they would have to confirm that during or after surgery. It has been very hard for me to deal with this, all I can do is keep praying and hope for the miracle. She is more than a sister to me and I can't bear the thought of losing her. Please pray for my sister and my family. I'll post another update after next week. Sincerely, Joy

My daughter Rachael who is only 33 years old has been diagnosed with ovarian cancer that has spread to her stomach and in her liver.Her doctor is starting chemo treatments Wednesday. She is in the critical care unit of the hospital. Her heart rate went up to 203 and they had to put her to sleep and electrically paddle her heart to make her heart rate come down.She was rushed to the hospital last Saturday after having been in extreme pain for a week. She thought she had the flu due to her throwing up and diarea. She is in good health, doesn't smoke or drink,take drugs. Her doctor thought she had fibroid tumors. She is so weak and tired. If anyone out there has a similiar story we need all the help we can get. One doctor told me it was hopeless and another said we have to see if the chemo can shrink the mass and then do surgery. If anyone has had what she has please write me at [email protected]

There are elements of my story that might sound a bit "woo-woo." Some people are uncomfortable with this. If you are, then I suggest you skip my story.

I suppose my story began in 1996. I worked as a secretary, but I had been laid off from another job, so I decided to temp. I was on a long term assignment, but I was without benefits of any sort - sick time, health insurance, all of those safety-net features of work I once took for granted as a permanent worker. Knowing I was up the creek if I became sick, I became instead a health food fanatic. I always tried to eat right and took vitamins - now I dosed myself with health food, exotic vitamins such as Picnogenol and Co Enzyme Q 10, as well as multi-vitamins, and herbs such as garlic and gotu cola. I will not list all the vitamins and herbs I took. That would make a couple of pages themselves.

I took these incredible precautions for a few reasons. First, as I had stated, I could not afford to be sick. Second, I had a history of diverticulitis. Third, I had a "tingly" feeling around the area of my ovaries. Finally, I was peeing quarts and had non-stop diarrhea

Since I could not afford to go to medical physicians without insurance, and since I could not afford insurance, I went to alternative healers because they were cheaper than regular doctors. One healer, practicing Reiki healing, told me that I was "seriously leaking energy" around my abdomen and suggested that I go to a doctor right away. I did go to a gynecologist in May 1996 (my cousin paid for the visit). I had a pap, pelvic, breast exam and had hormone levels in my blood checked. It did not occur to either my doctor or me to order a CA 125. I had no family history of cancer to speak of, I had not used hormones, and I seemed "normal". So I decided that I was probably okay and that the peeing and diarrhea were from stress. And indeed I had a great deal of stress in my life.

My assignment ended in November and once again I had to scrabble for work. In late December I found work, but then I had abdominal pain that was rapidly becoming worse. I felt like I was in a bind, pay my rent or see a doctor. I could not do both. Finally, a friend of mine dragged me to see a doctor at the Free Clinic January 6th. I told her of my history of diverticulitis and suggested that it might be that. She felt a "mass" and referred me to Olive View Hospital, one of the Los Angeles County Hospital network, for further observation.

By then I had developed rectal bleeding. When I was examined by the intake physician at Olive View I told him that I had rectal bleeding, and he ordered a sigmoidoscopy to be done within a few days. They could not, however, get the probe more than a few inches in the colon - moreover, the colon was clean - even I could see that on the monitor. Again, a "mass" was mentioned, but nothing I understood was said, except "come back in a week for a CT scan."

So I came back, was scanned, then told that my doctor would go over the results with me in a couple of weeks. During this time, I could not work at all. I could not concentrate from worry and from pain. I fell further and further behind on my financial obligations. I had to depend on friends to feed me, those times I could eat. It was getting harder and harder to eat by then. My stomach was in serious pain then, that I later learned was a symptom of bowel obstruction. At that time, I chalked it up to nerves.

Then the day of the consult. But what a disappointment - all I learned was that I was getting a gyn consult - to be done the following day. At that point I knew the news was bad. I just didn't know what it was.

The next day, I spoke to a gynecological oncologist. After a greeting she said "You have Ovarian Cancer." No doubt in her voice whatsoever. I exploded. "How do you know I have cancer at all? You haven't done a biopsy! Do a biopsy and then we'll talk about cancer!" I shouted. Her certainty upset me. Hell, at that point, anything would have. She was gentle with me, but very certain. She gave me a consent form to sign. surgery as soon as humanely possible. All I could think of was staying awake during surgery to make sure that no organs were unnecessarily removed.

Well, two weeks later I was operated on. What a miracle - only the ovaries, uterus, cervix, appendix and omentum were removed. However, I spent over 8 hours in surgery as they took out all visible tumors, and spent 3 days in ICU recovering from the operation.

I was informed that I would have no more than a 6 week window of opportunity to start chemo. And the chemo was delayed week after week after week. All I was told was that I wasn't healing fast enough by the general oncologist, but the gyn-onc told me I was. At one point I got the head of oncology on the phone and screamed that if I weren't treated, soon, I would notify my congressman, both senators and the news media about it. I also fired my general oncologist and got another oncologist on my case. For in addition to delaying my treatment, he said something I could not forgive - "we don't expect you to live more than 5 years." Well, with that quality of treatment, no one would.

Also, shortly after surgery, I had a full on bowel obstruction. I was admitted to the emergency room at 3 am, but not even observed until shortly after noon when I started non-stop vomiting. If you've ever had a bowel obstruction, you know what kind of pain was involved. I was given an anti-emetic then, but nothing for pain. The anti-emetic didn't work and I kept vomiting. I was not admitted until 4 pm, and only then was given pain killers, and an NG tube!

Well, treatment came, I went into temporary remission and all seemed well until the cancer came back. By then I had learned about clinical trials from another woman who had OVCA and applied to City of Hope for one of their trials. I was accepted, and transferred out of Olive View Hospital.

The difference in treatment is amazing. I am consulted about my treatment, procedures were explained, complaints listened to and acted upon. Even when I had another bowel obstruction, I waited no more than 15 minutes for a pain killer and was admitted within a couple of hours at most. I am not treated as the OVCA patient in Room 202, or 47 year old denying some symptom, even if it is so written in my chart. I am Ms. Millstone who blows bubbles and colors in a coloring book when I am an in patient, and the funny gal with the transfer tattoos on her bald head when I come in for exam. I share a love of garlic with my oncologist, and suggested that he tell his wife that high amounts of garlic help prevent heart attacks. In short, I am a person.

My prognosis? Well, I'm technically a Serous Papillary Adenocarcinoma Stage IIIC, poorly differentiated, recurrent metastatic, going on my 5th year of disease, so I should think of my condition as chronic but treatable. How long do I have to live? My doctor says if he were psychic, he would tell me, but since he isn't, he won't. He says I am in excellent health, aside from some barely visible tumors and I need more exercise. He tells me not to diet because if I lose weight he'll get nervous. In short, I'm a healthy cancer patient.

In August of 1993 after a joyous spring with a college graduation and a wedding in my family, my husband and I returned from a short vacation to the Bahamas. I began to feel out of sorts and have some abdominal problems. First I was gassy, then constipated. After about 2 weeks I began to have abdominal pain and one day, while having lunch with a friend, my stomach blew up so that I had to open the belt on my dress and couldn't bring the two ends of the belt together. About an hour or two later the bloating had gone down enough for me to close the belt again. That was on a Thursday. That weekend the pain I was experiencing grew worse and I was having trouble sleeping because of it. I began to think I had an ulcer. On Monday morning, August 2, I called my internist and asked for an appointment. The nurse wanted me to wait for the next day as they were very busy but the pain was getting worse and after hearing my distress she told me to come in that morning. My internist examined me and initially assumed that I had picked up a parasite while in the Bahamas. She ordered a stool test and wanted me to go to a very specific lab. While she was writing out the orders, I mentioned what had happened with my abdomen the previous week. She stopped and said, I want to send you over for an ultrasound. They made some phone calls and about an hour later I was on the table. The radiologist came in and said, please go back to Dr. Berman's office. Once there my doctor asked for my gynecologist's phone number. She called him and when I returned home there was a message to come in to see him the next day. I phoned and asked him what was going on. He said "I won't lie to you. You have ovarian cancer." I hung up the phone and said out loud, I'm going to die.

The next day my husband and I went to the gynecologist's office. He examined me and confirmed the diagnosis that had shown up on the ultrasound. He then called a gynecological oncologist and got me an appointment for the next day. The following Monday I was admitted to the hospital and on Tuesday I had a 6 1/2 hour operation. The cancer was throughout my abdomen. My gynecological oncologist explained that they removed it all but there were "measles like spots left throughout that the chemo would get". I underwent 8 cycles of cisplatinum and adriamycin over the next 6 months. A few months ago my husband mentioned that the gyn-onc had told my family after the surgery, that there was a lot more cancer then he expected when he opened me up. At the time I was diagnosed, I was completely alone. It took me 3 months to find someone who had survived the disease more than 1 year. Survivors were out there, but we had no way of connecting. I remember my gynecologist coming to see me after my surgery and telling me I had a very good internist. At the time, I had no understanding of what he was saying. Over the past 7 years I have heard many of the stories of misdiagnosis that have occurred to so many women and I'm sure that had my internist not listened to everything I said, I would have been one of those cases. Time and again when I tell my story, doctors tell me how lucky I was. With all the medical tests available the thing that made the difference in my case was my telling the doctor EVERYTHING and her LISTENING to me. Asking the proper questions and listening to patient response is still the most important part of practicing medicine.

Last August I celebrated 7 years for survivorship. I have had no recurrences and despite some long term side effects from chemo, I have thoroughly enjoyed the last 7 years. I've become a grandmother, traveled to the far reaches of the earth, been active in the community of ovarian cancer survivors and finding the sweetness in each day. I know that I am alive and healthy today because my doctor heard what I had to say and shall always be grateful that she didn't forget that most important skill of being a doctor, communication.

On October 17, 2000 my mother told me that she had been undergoing tests due to experiencing the vague signs of ovarian cancer (feeling tired, vague pain on her left side). Up until that time she was completely healthy, working full-time, exercising regularly, balanced diet etc. Needless to say I was totally devastated to hear the news and was scared for my mother, myself, our family etc. On October 18, 2000 I went with my mother to see a surgeon/consultation prior to her surgery. On October 31, 2000 my mother underwent surgery to remove the cancer and was formally diagnosed with stage IIIC ovarian cancer. Her struggle began after the surgery; admitting herself into the hospital to administer chemotherapy-Taxol and Cisplatin etc. She experienced a wide range of side effects from the chemo and the various complications of the cancer...unfortunately the cancer grew rapidly. My mother passed away on April 17, 2001 at the age of 62 due to ovarian cancer. The purpose of writing this is not to discourage people. Thanks for listening. Wendy

Thirty years ago, I was diagnosed with breast cancer at the age of 27. My right breast was removed but no treatment was deemed necessary as there was no lymph node involvement. In those days, they did not know what kind of breast cancer it was. Three months ago, I thought I had the flu and was being treated for bronchitis until my stomach bloated and continued to get worse. I complained of heartburn and nausea and was immediately sent to a gynecologist who diagnosed ascites and proceeded to drain 3½ liters of fluid from my abdomen. Of course I was diagnosed with ovarian cancer. I will be getting my third dose of chemo (taxol) on the 20th of December. I am also seeing a homeopathic person to utilize natural herbs to build up my immune system. No one can describe the feelings that come when you are diagnosed with ovarian cancer and told that the survivor rate at 5 years is only 20%. I am very determined to be one of those 20% but this is a very black cloud to have hanging over one's head (probably for the rest of my life). I am determined to live each day as fully and normally as if this disease does not exist in my life. I do foster care and am a very busy person (by choice) and I certainly am not done with life yet.

Hi my story is about my mom who died of ovarian cancer when I was 6 years old. When my mother was alive I didn't really get much of a chance to get to know her, even if I did I wouldn't have remembered. I really hate the fact that I had many chances to stay home with my mom except I chose to play sports or I ignored her because I felt that she was getting all the attention. I also hate that I didn't know anything about what was happening to her so I felt so helpless. It also bothers me that 8 years after she died I still knew nothing about the cancer that she had. I hope that scientists can find a cure for this cancer because of all the other kids who will grow up without a mother, who will never get to know their mother. That's all I have to say. Thanks.I have to say. Thanks.

I was diagnosed with stage 3 Ovarian Cancer in April 1991. I was blessed with being a patient of Southern Gyn Oncology, Dr. Larry Kilgore, in Birmingham, Al. He is board certified, and I think this is very important for us to insist on when choosing a physician to help us fight this disease.

I had my surgery, April 1991, I took 4 massive chemo treatments, a month apart, of Cysplatin, and Cytoxin, and my blood counts and all were so low, I just could not tolerate anymore. I had my second look surgery, which was not good. I was then scheduled for 38 radiation treatments at the Cancer Center in Montgomery, Al. Dr. Greg Patton was my physician there, and I was able to tolerate 30 of those.

I have gone regularly for my checkups, kept up with my CA125, and as of now, I have made my 10 year anniversary date in April 2001, and continue to be cancer free.

No other female in my family has had a history of Ovarian cancer, I have had 2 children, I took birth control pills for 5 years or more also. My grandmother and an aunt had colon cancer.

I just wanted you to know that some of us DO make the 10 year mark. I would have given most anything to have known that 10 years ago. Never give up hope, and fight like heck. You can do it.

I was dx with stage 3 class 3 ovca in sept of 1997. This after pestering my internist for two years with abdominal problems that, looking back, seem like classic symptoms. I had a full tah/bso followed by 6 months of taxol/carbo chemo then second look surgery. My second look was completely clear and until Oct of 2000 life went on. I was then dx with a recurrence of the ovca on my pelvis although my CA125 has never risen higher than 12. I just completed another 10 months of taxol/carbo but have developed an allergy to carbo so I dont know what I'll do when the next recurrence comes along. I am currently taking tamoxifen although I fail to see the benefit of it. In 1975 at age 34 I was dx with breast cancer and had a modified radical mastectomy. The following year I was dx with brca in the other breast and had a simple mastectomy followed by three soft tissue recurrences on the chest wall and 18 months of chemo...cytoxin, methatrexate, and fluoraracil 5 which I eventually just quit as my oncologist would not give me any idea when I'd be able to stop. My mother died at age 28 of breast cancer which was dx while she was carrying me and she refused an abortion. Life went on until 1996 when I was dx with a melanoma on my back which was surgically removed. Then in 1997 the boom fell on me again but I'm still here quietly fighting....but getting tired of the whole thing.......this is not quality life!!!!

This story is about my mom, Barbara LeFurge who died of stage IIIC ovarian cancer this past July 14th 2001. Mom was diagnosed with stage IIIC ovarian cancer in December 2000. She didn't have any symptoms, but a few things happened a few months before her diagnosis that made her wonder what the heck was wrong with her immune system: 1) Her diverticulitis flared up big time 2) She broke out with a bad case of shingles. Last Thanksgiving 2000, I drove to mom's like I usually do and spent the day with her along with the rest of my family. I noticed that she was bloated and just didn't look good. While we all sat down to eat dinner, she couldn't take but 2 bites of her food. I asked her what was wrong, and she said that she was "full". After I left her house, I knew something was wrong. I had a bad feeling. I called her the next day to see if she was ok, she told me she felt fine. A few days later, she called me at home to tell me that her waist had bloated out to 44 inches, and that her family doctor told her she had a hernia... she drove herself straight to the hospital and they admitted her immediately. The CAT scan picked up the ovarian cancer immediately. Well, she went through 2 horrible surgeries, the second time the cancer came back, it came back as a rare form of ovarian cancer called MMMT, a rare sarcoma type of cancer. She had 6 rounds of TAXOL after the first surgery, and I'm not sure the name of chemo she had after the second surgery. The cancer went straight to her liver. I was in the hospital every day she was. I was holding her hand and comforting her while she died in the Hospice House. I told her everything I could to comfort her before she let go forever. She listened and was calm as she possibly could be. We were close and I miss her horribly. Unfortunately, too many of us have to go through losing loved ones to cancer. I hope I'm not the next one up to bat with this monster disease. Prayer everyday is what I do.

Submitted by her husband.

She was very dear to me. We would have been married 40 years, on the day of her wake. Carmen was an LPN at a local convalescent home, and cared dearly for her patients, mostly seniors. She took her work seriously, and worked long hours, even when she was sick. Around the 10th of March, she began to have pains in her abdomen. She also had frequent indigestion but disregarded it as nothing. She then had a blood test, which was negative. Also a scan which revealed a large tumor on her ovary, 10cm in size. She was quickly scheduled for surgery but was told it most likely was just a cyst. But surgery revealed it was clear cell cancer. She was sent home after one chemo treatment and was doing good. But water began to fill her body, and she was soon back in the hospital. She was given another chemo treatment and sent home again but continued to fail. In a few days she could hardly walk. She entered the hospital once again but continued to get weaker. After five days a nurse found her unresponsive, in the am. She was rushed to the OR where she had additional surgery. But the bleeding could not be stopped, and her lungs quit working. She died about an hour later. I miss her. She was the love of my life.

7 August 1999 I'm feeling pretty smug about my health. I've been on a low fat, high vege/fiber diet. My life is blessedly happy. I'm 61. I retired early. I live in a city I love. My sons have found marvelous women. My first born grandchild, Arthur, lives downstairs. I have no symptoms, not even the whisper kind. I'm scheduled for my yearly pap test.

September 10, 1999 I'm packing to leave in the afternoon for a weekend trip. When I answer the phone, it's one of those "Is this Arlene Santoro?" stranger voices. I'm almost ready to say "No thanks, take me off your telemarketing list." Before my finger reaches the disconnect button, the voice identifies herself as Dr. Holt. "Your Pap test shows malignant glandular cells." Surgery is mentioned. A second scraping needs to be done to check the upper regions of the birth canal. She'll do it in the office to save costs. There must be a mix-up of slides. Denial is such a useful tool.

FIRST THOUGHTS Tests, tests, tests, surgery. TAH/BSO, micropapillary serous adenocarcinoma, probable primary peritoneal, IIIa. Everything depends on the pathologists. I am on cancer time. The first report says Low Malignant Potential-prognosis good. Kurman, the Johns Hopkins specialist says, "No, this is a LMP sub set, prognosis extremely poor."

From this day forward I sail uncertain stars, No safety net, no chart, back-pocket-tucked. This I know, there is no turning back.

LIFE GOES ON Maybe this section should be, "life changes." Maybe, that is what "going on" means. I take 7 rounds of taxol/carbo. I manage better than most. I think more introspectly now. I begin journal writing Because I love life I exercise, take yoga, eat soy-miso-hummus, try any supplement promoting the immune system, give up dairy, sweets. I buy organic produce. I increase vegetables/fruits. I drink green tea. I zap. I try flax seed/oil/cottage cheese. I relish my Arthur time. One newly appreciated day at a time. I am impressed how society tries to help. The Wellness Center, the Ovarian group, strangers on the internet list serve. Self indulgence appears. I am staying with a modified heavy vege diet, but I'm buying better beer. Many times I've said to myself that I've already had more than my share of happiness. Oblivion holds no fear.

Chemo stopped when I base-lined at 5. My post chemo checks were 5, 6, 5, 10, 21, 36. The trend does not look encouraging. In limbo I wait and watch. Then, I feel a subtle tightness in the abdomen. . My belly is bloated. I gain weight. It seems clear to me the the beast is back. Everything has changed. Where once I dreaded the word "reoccurrence" I now know that it's just an obstacle. More number waiting, 58, 55, 91, 188 The cat scan shows nothing. Although counter intuitive, doctors, including from a second pathologist and a second gyn/onc say to wait, wait for something that if they treat, they can calculate effectiveness.

Finally the ct scan shows two spots. Plaque like areas on the ribs and on the bowel. The doc measures my remission time from the end of chemo to the spots on the scan. Over a year so I'm back on carbo/taxol. I celebrate the slower but more mindful pace of my life.

I was diagnosed with fourth stage Ovarian Cancer over two years ago at the age of 45. I am a two time Survivor, the first one was Breast Cancer in one breast almost ten years ago. I am doing just fine, thanks to My Spiritual Growth with God, and love and support from my family and our humor, which for me is so important!! I am waiting to hear from my insurance company for the ok on the Gene Test since this runs in my family. I have two daughters in their thirties that are waiting to see if I have the Gene!! Positive thinking is my answer so therefore I have a fifty per cent chance I don't carry this!! The waiting is the most frustrating part for me. I take one day at a time and Thank God everyday for being here to help others!! Sincerely, Kathleen Smookler

I'm a 30 year old single mom and for the past six months was experiencing pain on the right side of my stomach. I went to my OBGYN doctor on several occasions complaining of the pain and was advised to take a urinary tract infection test, pelvic sonogram, and gastrology test. All results were negative. I decided to go on with my life and forget about the pain but the pain only got worse. So I went back to my OBGYN doctor and he scheduled me for another pelvic sonogram. This time they thought the saw a cyst on my right ovary and two weeks later, I was scheduled for laproscopy surgery. During the surgery a cyst was not found but large amount of fluid and cystic like bubbles were found surrounding my organs and fat tissue. I was stitched up and told to go home and do not return to work until a pathology report comes back to give me a diagnosis because my doctor had no idea what the fluid was. Two weeks passed at home and my doctor still had no answer or pathology report. So I decided to go online and diagnose my own symptoms. That's when I came across your website. I read the personal stories of the women who experienced the same symptoms that I had. So I decided to take matters into my own hands. At the women's advice, I contacted a oncology doctor, told him my story, and asked if could help me. I was scheduled for an appointment and given a CAT scan and barium enima. These test help discover fluid surrounding several organs in my body. I was immediately scheduled for surgery and I was diagnosed with a low grade appendix cancer. I had my appendix, right ovary, and part of my colon removed because the fluid caused a lot of damage. I'm currently recovering and will discuss my treatment options this week. I want to thank all the women who posted their stories. I feel that you have saved my life. Although my family and I are shocked at the diagnosis, I'm still grateful for your stories in helping me take action. I recommend that all women be required to have a pap smear, pelvic sonogram or CAT scan of the stomach every year! Thank you so much and I love you all.

On April 20, 2001 I missed school. I had a very strong abdominal and back pain. It was so strong that, that night I couldn't sleep at all. I would rub alcohol on my stomach and on my back to see if it would take my pain away but it did not work at all. My father had taken me to a women's clinic, then from there they sent me to a hospital, said that I needed an ultrasound because my stomach was too big. I had a hard time walking. Well I went to the hospital and took an ultrasound,scanning test,an MRI and more exams that, the doctors came to the conclusion that I had a mass on my right ovary. Then the OB/GYN department sent some doctors to talk to my parents. By then I was already in the emergency room. It was around 9:00 p.m. when I was diagnosed with Ovarian Cancer Stage Three. This was an unpleasant news for me and my parents. We had never had this problem in my family. I was only 17 years old, pretty young for me to have this problem. I was going to turn 18 in June. Every day my pain was stronger, I had already lost 10 pounds from my regular weight, because I had no apetite. The doctors didn't know if I was born with Ovarian Cancer or it had developed in 6 months. It was either one or both. I could have detected this problem before, but I was too embarrassed to say that I was sexually active, so they couldn't do the exams that determined my pain. I had already went to the doctor but always said that I have never been sexually active. Well, I was hospitalized on April 20, 2001, and had surgery on the 23rd. I had a laparatomy surgery, they jiggled around my reproductive system to remove what was killing me. It lasted approximately one hour thirty minutes. My ovary was the size of a grapefruit which is really big, because a normal ovary is like a strawberry size, the doctor said. I took six cycles of chemotherapy, and finished them on August 16, 2001. I was 19 days hospitalized, and I had six liters of fluid removed from my stomach. When Dr. Hines went to my room to remove my staples my surgery opened . The doctor said that it was because I had too much fluid in my stomach. After that I had stitches on my surgery. They were removed and it was still open. It closed by itself five months later. It took such a long time to heal. I tought it was never going to be closed. I had to purchase gauzes almost every two weeks. Anyway, my CA went down, my body responded extremely well to the chemotherapy. Now I'm 18 years old and praying everyday to get better so I could finish my school. I didn't graduate because even after I was discharged from the hospital I was too weak to walk and eat. I would be asleep almost all the time after been discharged too. As soon as my hair grows back and my eye lashes, Fo'chizel I'm going back to my regular life. I really thank the lord for letting me see life better after this experience. I realize that I made a lot of unnecessary mistakes in my life. I will always thank the lord for letting me live longer. This was a scary experience. Wouldn't want this to happen to someone young or of any age. It's hard to be in my place when you're only 17 years old. I appreciate life more after my incident. My family was always supporting me in my hard time hustlin'. (Krayzie Bone) I hope I don't have to fight cancer again, because honestly it's really hard. Enjoy life everybody!.......

DIAGNOSIS

My story begins in late 1998. I'm one of those lucky women whose doctors took no chances and gave me immediate care. As a postmenopausal woman of 52 on HRT, my gynecologist insisted on seeing me every six months. Bless her heart! I had my routine exam in June, 1998. In September, I had some slight vaginal bleeding shortly after I forgot my hormone pills for a couple of days. No big deal, I thought. Just like forgetting birth control pills. About a month later, I bled again slightly for a couple of days. That worried me a little, but it stopped. No family history, two healthy children, years on birth control pills, no pain, no bloating, no fatigue...nothing to worry about. The third time it happened, I called for an appointment, which by then was time for my six-month checkup in December. My gynecologist, Dr. Elizabeth Villamar, examined me, said it was possible I needed a little more progesterone, but said "Just to be safe, let's have a transvaginal ultrasound done." The ultrasound revealed what appeared to be a 6 cm. cyst, but seemed to be only cystic. Dr. Villamar called me and said she would schedule me for surgery after the holidays because at my age such cysts should be removed to preclude cancer. At that point, I'd made up my mind to ask for a total hysterectomy to avoid having to have surgery again if the other ovary developed a cyst. The decision was removed from my hands.

In January, Dr. Villamar re-examined me, very frustrated that she couldn't feel a cyst of that size, but determined that the weight of the cyst had pulled my ovary behind my uterus. Without her diligence in sending me for an ultrasound, it might not have been found for a long time. Again, "just to be safe" she sent me for a CT scan prior to surgery and a CA-125. The CA-125 was only 20, well below the "normal" range of 35. However, the CT scan showed that the cyst had grown subtantially, that there was some solid, possibly cancerous material in it, and that there was possibly a metastasis to the liver.

She immediately referred me to a gynecological oncologist, Dr. Thomas Herzog, at Barnes Jewish Hospital, which is part of the Washington University School of Medicine. He performed a TAH/BSO, removed the fibrous mass from my liver, removed the omentum, as well as several lymph nodes. Tissue samples were taken from the peritoneum, diaphragm, and other lymph nodes. When the pathology reports came back, the only cancer was found in the right ovary, which had ruptured, classifying my disease as I-c. Three weeks after surgery I began a protocol which consisted of three cycles three weeks apart of Taxol/Carboplatin. I was sure I was going to be miserable, but was really only slightly tired during the treatments. I did lose my hair, but it came back swiftly. I was blessed with my first grandson during treatments, and Dr. Herzog once said I'd done so well he wished he could arrange for every woman undergoing chemotherapy to get a grandson!! My CA-125 following surgery had gone to 100, but after the first treatment, it dropped to 29, then 19, then 11 where it stayed until October, when I was put on 3 month check ups. We all thanked God that we had beaten the monster!

I spent much of the month of January 2000 in the ICU visiting my dying mother and contracted a nice case of flu followed by pleurisy. In February, my CA-125 had risen to 24, which frightened me, but my doctor kept reassuring me it was probably a result of the pleurisy. In May, it was still at 24, but I had slight discomfort in the right upper abdomen. I thought it might be scar tissue from the liver surgery because it was in the exact place where the surgery had occurred. I also received a brand new grandson in May, and my interest was far from cancer, as long as that CA-125 stayed in normal ranges.

In late July 2000 I started experiencing shortness of breath, fevers, and pain in the abdomen. The August CA-125 had jumped to 142, and a CT scan showed the recurrence was a large tumor in my liver and 35 smaller ones scattered over the liver and peritoneum. I thought my outlook was pretty grim, but I signed on for another protocol, this one to determine how women handle topotecan treatments for 3 consecutive days instead of having the same amount of chemotherapy spread over 5 consecutive days...an improvement in quality of life, if one gets 2 fewer days in a hospital ward. (No offense to the chemo nurses,who are among my candidates for sainthood!!) I had an immediate response to the drug, dropping my CA-125 to the 60's by the fourth round, then holding it there. CT scans every six weeks showed stable disease, for which I was thankful. I did experience pretty serious anemia, requiring transfusions in November and in January. During this period, I had so much support in prayers and in physical assistance. My friends took me to treatments and stayed with me, gave me massages, cooked my meals, dealt with the fears of my husband and adult children, anything possible … and I had to learn to swallow my pride and accept it graciously. I can never thank them enough.

In March 2001, however, the CA-125 started spiking again and rose to 198, and the pain returned. The CT scan showed the growth in tumor size that still did not reach "disease progression" standards, so I was returned to a regimen of Taxol/Carboplatin, which had been successful in 1999. Progress was immediate. The CA-125 dropped to 108, to 60, to 36, to 33, to 26, to 29 where it has held. In addition, I FELT much better on that regimen, since it didn't drive me into serious anemia. I'm now out of treatment for three months to see if I'm lucky enough to be in remission. My hair is growing back, and I've enjoyed a wonderful vacation in Florida with my children, their spouses, and my "perfect" grandchildren.

I think faith in God and the love and support of my family and friends have been the mainstays of my life during this illness. I am well aware of how serious my illness is and as a retired statistician, exactly what my odds are, yet I have every expectation that we can tame the monster into at least a chronic disease, if not defeat it altogether. After all, if no one beat it, survival rates would be 0%, not 5-20%. I live every day much more fully and am appreciative of every sunset and rainbow and every grin and giggle from my two littlest boys. I hope to live to see both of them, and hopefully others, grow to maturity.

I am not sure where to start except to say I have ovarian cancer and have had it for 5 years now. For many years I had all the symptoms and did not know. In June of 1996 I, as always, felt bloated and feeling the urge to urinate and not able to lose weight. I had been in the hospital from pain in my abdomen and was begging for help with my problem. The doctors all said nothing was wrong and I was fine. Finally after years of thinking I was just over-reacting, I decided once again to go to Kessler AFB in Biloxi MS. to see if they would examine me again. I had told them I know my own body and needed to find out the source of my pain, they finally did a pelvic exam and found a very large mass. I was sent home to return for an ultrasound the next day. They made me sit and wait for the doctor after the exam, which I knew something was wrong now because you are usually told to come back or they will call with the results. After waiting for 2 hours the doctor comes down and asks for me to move to a corner and said it was a large mass on the ovary and I needed to see a surgeon in my home town. I had gone to the doctor alone which also was a long drive back to Mobile AL where I was living. Anyway the bottom line is I had surgery and it was stage 3 and spread to the colon, diaphragm and all over the ovaries. My CA125 was 1250 and I was very frightened. I live in Texas now and still am fighting the cancer, but I have done many chemos, and so many clinical experiments. The doctor says he is amazed at how well I am holding up, but I can tell you with love and faith in the Lord and family you can keep fighting and hoping that one day a cure is found. My Ca125 is 154 and I do no chemo at all and will not again. My need for life is wonderful and anyone can fight and women know their own bodies and need to stay on top of your doctor if he says you're ok and you know different, just believe in yourself. My story is long and I can give so much more details, but hey I have not the time. But I want everyone to know the facts of this silent killer and I am willing to share. E-mail me ([email protected]) or even call if you need to talk. My number is 817-361-7697 Florinda Painter

I had ovarian cancer 14 years ago and had 6 major chem treatments and also the second look surgery. In 1999 the CA125 tests were starting to become elevated so A CAT Scan was done and ovarian cancer was back. I had 13 chemotheraphy treatments and doctors claim I am in remission again. My worry is that even after all the chemo my CA125 never went below 21 and is now again at 36... I have been helping other women in Northern Ohio for the past 14 years. Glad to hear of your organization.
Dorothy Shillman

My diagnosis came in 1999, when I was 37 years old. I had just had a baby one year previously, after 13 years of infertility (endometriosis). We were able to adopt two extraordinarily wonderful (of course) kids during those years, so I have 3 now. I had been a nervous wreck during the pregnancy, due to the fact I had miscarried once previously and had some spotting, so I was getting ultrasounds about every other day (o.k., that's a little exaggeration). Fast forward to one year later, when every time I stand up I feel like someone is hammering my bladder and I am in the powder room every 15 minutes. I'm sure I'm not in a family way again, so figure it must be a bladder infection and up my fluids trying to "flush it out". That wasn't doing the trick so I decided to pay a visit to my friendly m.d., only in my (ex)-m.d's office, you are always set up with a stinkin' resident. So, I asked him to test me for a bladder infection and to be on the safe side, a pregnancy test. Both were neg, so he palpates my abdomen, remarks I'm "clammy" (my kids, whom I wasn't able to find someone to watch, were digging around in the "bio-hazard" can, so of course I'm "clammy"). As he pushed on my stomach I told him it hurt in the area of my right ovary and he said something about the fact that I knew I had adhesions (yes I did know that, but they didn't always hurt when you pushed on them). So he patted me on the head, told me it was hormonal and buh-bye!~ I went for about another week with the hammer on the bladder thingy when I decided I'd check it out with my ob-gyn, partly because I was feeling guilty about not going in for my yearly visit. When I saw him, he palpated my abdomen and immediately asked "you had a pregnancy test?" I assured him I did and knew I definitely was not pregnant. He said I had a mass the size of a 4 month fetus. He did an ultrasound immediately and didn't mince his words. "You've got this mass that needs to come out immediately - it has ragged edges that can indicate cancer". I was stunned to say the least. We made the appointment and I was out of there, driving home thinking I was a dead woman. I could only think of Gilda Radner and wished I could think of some ovarian cancer survivors. My doc and a gynecological oncologist did the surgery, and when I awoke in the recovery room my doc came in to tell me what he found. He put his hand on my hand and in my semi-conscious state, I grabbed it with my other hand. He was telling me they had got the tumor out and so on and so on, but all I was thinking was "I'm holding his hand! Why did I grab his hand and how do I nonchalantly let go of it? Good heavens, what is he thinking about me doing that?" and so on and so on. He told me I'd probably not remember him talking to me. I think I remembered every word he said and everything I was thinking. The good news was I was a stage II, grade II-III. I did the chemo thing on a protocol (3 treatments only of Taxol and carboplatin). And I'm doing great. I'll always be grateful that my "cantalope" sized tumor was pushing on my bladder to spur me on to get in to see the doctor.

15 years survivor; diagnosed at 21 in 1985.

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I was diagnosed with grade/stage 2 ovarian cancer in 1985 when I was only 21 years old. I had to drop out of college. I had my right ovary removed and endured 6 months of extremely harsh chemotherapy (remember, in 1985 the anti-nausea drugs were almost non-existent.) When I was done with chemo, I went back and finished my degree in journalism. I have been a survivor for 15 years...i am 36 now. I cannot have children because the platinum in the chemo made my existing ovary sterile. I wish that I had support groups then; all they could offer me, as I was the youngest ovarian cancer patient they'd ever seen, was a breast cancer support group of 50-something women. It's wonderful to know that there ARE wonderful wigs now, there ARE wonderful anti-nausea drugs and support groups.

I am 34 years old married with one child. At the age of 21 I had to have a hysterectomy in 1988. In 1996 they had to go and get both ovaries. Well in 1998 I started having pain againg so my husband rushed me to emergency room because I could not walk. They did xrays and an ultrasound to find out my right ovary had grown back this can't be we thought the doctor just didn't take it out. So I had to have surgery to remove that one and I was feeling fine for about a year. In 1999 I started having the very same pains would not go to the doctor this time until I was unable to walk again. We went to the doctor and was told my right ovary was back I was sent to a specialist where I had to have another surgery that year. Well it's been two years today since my last surgery but I've always been in pain and I know the ovary was removed I was in surgery 8 hours. But I'm very upset because my left ovary is back now and all doctor are refusing to help me every doctor is trying to put me off on the next. No one is thinking about the pain I'm in how I'm unable to have a normal life with my family because the doctors keep me on strong meds that keep me sleepy. I'm looking for someone who has or had this same problem. The doctors say that it is normal but they can never tell me of another case that they have treated. I just would like some information on how we can keep this from coming back again if it's removed this year. Please anyone that can help email me at [email protected]. I am thanking you in advance.

I carried my last baby with a growth in my side that turned out to be an ovarian cancer. I had it removed as well as my other ovary when she was about 2 1/2 months old. That was back in 1966. She is well and healthy as am I. I or my Dr. got notices from the tumor board for 20 years to reply as to whether I was alive or not and the state of my health. It got funny after a while. It was in the days before chemotherapy and that sort of thing was done. I have wondered if I had any antibodies or anything that might be reproduced to be a vaccine or anything for other people. I have a hard time getting anyone to take me seriously. I am now 71.

I am 40 years old. I had never had a stitch, or spent the night in the hospital. I never had chicken pox, measles or mumps.....other parents looked at me as if I were some freaky child that never got sick. Until February 2000 when I was diagnosed with Ovarian cancer. But it took sometime to diagnose this 14+ centimeter, partially torqued, twisted and necrotic ovarian mass. I had had some mystery bleeding for sometime, without any real identified cause, gone the birth control route to "regulate" my hormones. However, when the flank pain kicked in, I thought it could be a UTI....and so does the doc. He prescribes the UTI antibiotic treatment plan, and I go home and throw them up for 2 days....all the while pain and vomiting are worsening...Now it is Saturday night and I am heading to my local ER where I am mortified by their lack of basics, biohzards coming out of the wastebasket, blood spatters on the floor (not mine) and not an IV pole in the house. It is the middle of season in South Florida, but please. I sat in the ER for 8 hours.....they lost my cath'ed urine. They left me without pain control for 4 hours. They left me without control of nausea and comiting for 6 hours. Then I think I was treated for that because the ER physician was annoyed by my vomitous sounds. How do I know this, I heard him! Finally, they discharged me. But what about a diagnosis? What about any tests? No ultrasound? No CT scan? What is wrong? Take your antibiotics and follow up with your Primary......so I got through Sunday, and Monday insisted on seeing my primary, who arranged the ultrasounds.....and finally the diagnosis of left mass of the ovary February 29th, 2000. Three primary sites of cancer were found. Endo of the Ovary, Endo of the Uterus and Small Cell of the Same Ovary. Stage IIIb. Followed by surgery, chemo, brain metastisis (Stage IV), whole brain radiation and stereotactic surgery. It has been a busy year. My sisters on the digest have encouraged me to write my story to you. I hope that if you are a physician/resident/intern/ or patient you will gain something from my tale....please do ultrasounds and transvag's...in cases of vague abdominal pain. I know my experience is probably extreme. Experiencing it was EXTREME!!

I was diagnosed on 9/28/00. I had a 1% chance of getting ovarian cancer, having six children and nursing one for over two years. I also have no family history of cancer. I have had four chemo treatments of taxol and carbo and have two more to go and then six weeks of low dose taxol. My surgery was optimal so that's one good thing but it was found in stage IIIc. I went for a complete Gyn physical on 7/31/00 and was given a complete bill of good health. I did an annual checkup for 35 years and never had a Gyn problem. My symptoms started on 8/11/00 but were slight until 9/7/00 when my abdomen started to swell. Thank you for your stories they really help because my town has no support for ovarian cancer. Thank you again.

At 47, I was in menopause in the spring of 1998. I attributed this fact as the reason for my distended abdomen, causing me to appear 6 months pregnant, loss of appetite, and chronic fatigue. No pain was associated with this, so I was only mildly concerned. As a precaution, I decided to see an internist, who claimed nothing was wrong and sent me on my way. My husband, however, would not accept this opinion and took me back to the doctor's office demanding something be done. Another doctor saw me, performed an x-ray, and after no internal organs could be seen because of all the fluid present in my abdomen sent me to the E.R. for an ultrasound and sonogram which showed 3 tumors --one around each ovary and one around part of my intestine. After 4 liters of ascites fluid was drained from my body and a CA125 test result of 730 obtained, I underwent a TAH, appendectomy, oophorectomy and bowel resection. I underwent 6 txs. carbo/taxol and 3 txs. of taxol only (part of a phase III trial). I was staged by a gyn/onc as Stage IIIc serous papillary adenocarcinoma. My last treatment was 1/99. My Nov. 2000 CA 125=<6.0. After 1 year of monthly gyn/onc visits, I now go every 3 months, but check my CA125 monthly (I purposely skipped Dec. to enjoy the holidays without worrying about the result).

My advice to all women is to listen to your body and heed its warning signals. Let no one dismiss your concerns . Be tenacious in being heard and in getting help. It could make a difference in being diagnosed at an early stage, if cancer is present.
Peace and healing, Lois

I work ( or used to work) in a medical library so I had access to all the major textbooks and journals. From time to time I would browse in the books on gynaecological cancer, always checking on ovarian cancer. I knew it was the dreaded one, the "this-is-a-death -sentence" one, and I held unruly, bubbling and gurgling, with unpredictable motions. At the time (April) the media are plugging Bowel Cancer Awareness Week, so I go to my doctor, apologising for possibly wasting his time but ... He examines me and says he is referring me to the hospital to see a specialist, just to be on the safe side. I go to the far Northwest of Scotland with some friends for a week in early May and brood occasionally, going so far as to buy a bottle of Essiac mixture (a herbal preparation said to be efficacious in fighting cancer). We have good weather that week, and I look at the pale beaches, the jade-edged sea, the shadows of clouds across mountains and water as if I might never see them again. I enjoy the comfortable and undemanding companionship of my friends, warming my hands at a fire that might give way to a different, colder existence. May is always a bad month for me because so many things have happened then: the exam phobia that went on for years, right through University and Postgrad. School; the aunt who was my second mother died in May; my father had his first stroke in May; my husband died in May.

Back home, I go to the Infirmary. The gastroenterologist is a surgeon, and is called "Mr" as is the custom in Britain. He is tall with curly dark hair, and looks to be at least part Chinese or Malaysian, but speaks without any trace of an accent. He lays hands upon me and says yes, he can feel the lumps. "What lumps?" I ask, struggling not to panic. "Didn't your GP tell you?" "No" Tests are ordered. First a colonoscopy. I have to be an inpatient for this because it is done under a general anaesthetic. It is done at a small country hospital where this specialist has a Colonoscopy Suite. The waiting area is very well appointed in pastel shades, with a carpet, comfortable armchairs and a smart receptionist, as if it were a private facility and not part of our overstretched National Health Service (NHS). A thin woman in jeans, with bleached hair showing dark roots is waiting with an elderly lady who turns out to be her mother, along to give her support. I am alone as the friend who has driven me there is unable to stay, but will collect me the following morning. I have brought a book, but after a while the need for human contact starts me chatting to the thin blonde woman. In the sharing of these trials you make rapid strides into superficial intimacy. She is having ongoing gut symptoms, - no-one can get to the bottom of them it seems. She runs a business, with her husband, and they both work very hard. They have expensive holidays and lots of the worlds' goods, but she seems anxious and restless. After this is all over she is going to have a face-lift - she deserves it and her husband is in full agreement if that is what she wants. I thought I saw her in the street not long ago - if it was her, the face-lift didn't cure the anxious look. We have to drink 2 litres of a liquid that tasted of chemicals and vanilla, and after two glasses it tastes steadily more repellent. As it takes effect, we try not to make an obvious and inelegant rush into the adjoining toilets, but soon abandon all pretence at propriety and dash in, swapping progress reports through the cubicle walls. "When it looks like lager coming out, then you're ready" had been the nurse's advice, and after two litres of the vanilla horror it looks like just that and I am wheeled to the small theatre. Then the surgeon's face, smiling a little, reassuring, as they will try an abdominal ultrasound next. Another week's wait for this. The radiologist runs the scanner over my gel-covered skin, keeping up a running commentary. "Kidneys fine, liver OK, spleen fine." (Spleen? - an organ quite outside my consciousness, but I am happy to know that this obscure part of me is in good order ) "What about my ovaries?" "They seem to be fine" Relief, but never total. Another wait, back to clinic for results. Nil. "We'll have to go high-tec now", so a CAT scan is ordered. Wait for this. Notice of the appointment arrives with a phial of some contrast agent to take beforehand, then another chemically-sweet drink just before I am slotted into the scanner. The large room is cold. After the radiographer has fitted me onto the table and instructed me, she retires into a booth and I am alone with this screen with the hole in it that moves back and forth over my body. A disembodied voice tells me what to do, "Breathe in ... Breathe out..." This scan happens to me again a year later and this time it is through the hole into Cancer land. But I am still outside in '98. They finally decide I must have a small hernia, and it will be repaired in the NHS's good time. This whole procedure has taken 7 weeks and I have been in hope and non-hope on a daily basis and am bruised emotionally and mentally despite seeing a psychotherapist. It is now early July. I go to work, I go on holiday to the USA in September, feeling that I must see these friends again, - always the impulse to gather everything while I can. Christmas is a time I dread, and this year bears out my fears. My very elderly mother is in a rest home and can no longer make it to my house in the next city for Christmas Day. My son and his partner are at her mother's this year, so I arrange to go to Cherry Trees rest home and spend Christmas Day with my mother. I feel slightly off-colour but go anyway, not wanting to disappoint. The next day 'flu hits me for the first time in 25 years. My body feels as if everything in it is being sucked away, I sweat so much my mattress is soaked, and I lie on the bed on a towel. It takes 3 weeks to recover and I never seem to get back my energy properly. Mercifully, I have not transmitted the 'flu to either my mother or any of the other old ladies in the home. I the hernia repair. Neither the specialist nor his senior registrar can detect the elusive hernia at this point. He can have a look inside he says, or I can go home and report back if there is any further trouble, but all seems well to him. I go home because I want out of that hospital. It isn't yet my place to be. My friends are delighted at the end of a dragged-out episode, but I can't share their delight and tell myself that it takes time to assimilate the good news and internalise it. I have a little collection of these psychotherapeutic remarks to combat negativity. It is surely just a question of time before I feel better. I go to Spain in March, to an "alternative" holiday centre for a little sunshine and support. I enjoy the company, the outings to Granada and the mountain villages of the Alpujarras, but I am having considerable night sweats and finding walking up hill much harder going than I ever remember. I remind myself I am 58 after all, and the sweats are probably just a bad surge in the menopausal hormone saga. The last day I have a therapeutic massage and feel un-restored by it. The therapist seems tired and I sense that she has her own problems, - no comfort there. In April I start to bloat. My GP prescribes laxatives. While she examines me I ask her to check my "gynae bits" (my expression). She can't see anything wrong in there. When the bloating remains and increases, she refers me back to the gastro-man and this time, as he examines me, his face is professionally blank and I know the news is not good. He thinks another CAT scan would be a good idea, then I will come back for the results. I ask no questions, but as I am dressing I hear snatches of conversation between him and his senior registrar through the thin partition wall. "Quite serious" "feel nodules" and I know that my nemesis has arrived. I revisit the scanner. I can't face a wait of three weeks before the return visit appointment so I see the friendly young woman GP and she agrees with me when I tell her what I heard through the wall, so she arranges with the hospital to bring the appointment forward. This time I take one of my oldest friends with me to the little country hospital (the great man has clinics both here and in the big city infirmary). He says "I'm afraid it's not good news. You have cancer of the ovaries" He is not abrupt or cold, but there is no easy way to break this news. I don't react, no tears or signs of shock - after all I knew this was coming. He will refer me to a colleague at the Infirmary, a gynaecological oncologist, a good man, and I will have a hysterectomy and chemotherapy to follow. He may have named the type of chemo even, but I can't be sure. Am I all right? Have I someone with me? Sister will stay with me now to answer any questions. He leaves me and the nurse comes back. She is tall, dark-haired woman in early middle-age, sympathetic in manner, but matter of fact. I tell her about what I overheard through this same wall on my previous visit. She ought to know this I say, because the same thing could happen to other patients, and it's obvious that Mr.S doesn't know that he can be heard from the adjoining room. She asks me how I feel. I say that, well, if that is what it is, I will have to have the treatment and just get on with things and do the best I can. It sounds very British, doesn't it? Understatement all round. But it's more to do with my foreknowledge than an inherited stiff upper lip. She says that at least I seem to have a positive attitude, ie. I haven't turned into a sniveling wreck at the mention of cancer. "Positive" is a word which will crop up a great deal in the next few months. I go out to where my friend is waiting and say "Let's just get outside". Once there, walking to the car, I tell her the verdict. She asks how I feel. I say it's all going to be very interesting and she thinks that is a good attitude whatever the outcome for me. She is not one for platitudes, this other Pat. I don't need sympathy - acceptance is much better. Dealing with other people's emotions is too much to cope with right now. The very worst part is to come - telling my son. I decide not to burden my mother with the whole truth, but Phil will have to be told. I have to do it by 'phone and I am shaking inwardly as I dial the number. He is at home with his partner, and I am glad that she's there for him to share this cruel news. His father died of cancer in 1990, when Phil was doing his final university exams. He had to be called home in the middle of them because of a rapid deterioration in Keith's condition - the course of his disease was only 3 months from start to finish. All this will be in his mind as he hears my news. Now I have to tell him that the pattern could well be repeated - and it seems the hardest thing to do because this 32-year old man is still my child and how can I bear to hurt him? He sounds pleased to hear from me and asks how I am. I find myself saying that I have some rather bad news concerning myself. He is alert immediately - I can sense it over the 'phone. I tell him about the cancer and how sorry I am to have to give him this news. He is shaken, but asks rational questions about how much I know and arranges to come to Leeds as soon as he possibly can to be with me. I can't tell him how glad I am to know that he is coming, because suddenly I need him there and it can't be soon enough. He is a son, but also a living reminder of my husband and of course I wish for both of them to be here. On May 19th, the 9th anniversary of Keith's death, I get the verdict confirmed by the gynaecological oncologist (gyn/onc). Phil is with me, and the other Pat. The surgeon is probably in his early 40's. Fair hair, fair skinned and blue-eyed; friendly and approachable, he answers all our questions about treatment options. At first he mentions putting me on a clinical trial using chemo only, but my son is dubious about this, and I feel I want what I have come to expect: the surgery, the chemo. I want this alien growth removed -it feels safer that way. He checks my notes and consults with someone offstage, returns and says the conventional treatment will be his choice for me after all. Later I wonder if this is because I am so far gone that only root and branch surgery will get it all out. It's impossible to take comfort from even the offer of the treatment that you want - my mind will interpret everything in the darkest possible light at this point. I have to wait three weeks for surgery - it would normally be less, but a Bank (public) Holiday is coming up and for that week, no clinics or surgery will take place. I go back to the clinic the following week, armed with further questions, about losing my hair (yes); prognosis (he doesn't think that's helpful right now, ie. Medspeak for not a brilliant prospect). Mr. B. told me to come back with any questions, - they will squeeze me into the busy clinic if I don't mind waiting a bit. That I am surprised and relieved at this evidence of care and willingness to give me information might seem odd to those who don't know our NHS. capable of understanding the rationales behind the treatments and drugs. Time with a specialist is very limited, and time with a specialist who treats you like a sensible human being, with humour and patience, is a blessing rarely received.

Treatments and Procedures
The first treatment I underwent happened before surgery. I was swollen with ascites (fluid collecting in the abdomen), looking about 5 or 6 months pregnant. The ascites scared me - or at least the word did - because I first heard the term when I was a very young student nurse applied to a woman with liver cancer whose belly was very swollen. They tapped the fluid off to relieve discomfort, but it was made plain that this was merely palliative and she was not long for this world. Bear in mind that this was 1958 when cancer treatments were cruder and less effective, as were diagnostic tools - cancers got "found" a lot later than today. So there I was with this symptom that had the most negative association for me. I felt strangely calm about it though. I'd been told that the fluid could be drained off if I felt uncomfortable, so I rang the hospital and arranged to go in and have a paracentesis as this procedure is called in medspeak. I wanted to go to the country for the holiday weekend without this weight of body and soul. I went to the ward where I would soon be an inpatient. The Senior Registrar, a dapper young Irishman, came into the treatment room and explained what would happen. What did happen was that a local anaesthetic was given to numb the skin where the drainage tube would enter. He made a small incision and pushed in a large bore tube. Once in, as he had said, there was no pain inside, - the internal organs don't have pain receptors it seems, but there was a hard push through the muscles and tissues protecting my abdomen, a popping sensation as the tube broke through my defences, and then straw-coloured fluid started to drain out into the jar on the floor. I had to lie on my side to assist the flow, and he left me, draining away, reading my book. The ward sister, a tall dark-haired 30-something with a soft voice and gentle features to match, came in to check after about an hour. She moved me around a bit to increase the flow, seemed concerned that I might feel alone, asked about my book - it was all very unthreatening. Looking back I see that I was oddly calm at this time. Maybe it wasn't so odd. The verdict had been given, I had only to wait for the surgery. It reminds me of how I felt when pregnant. Calm, knowing that something momentous was going to happen which would change my life. The discomfort and pain to come was not at the forefront of my mind, only the immediate ordeal which was inevitable but which would free me of the diseased organs. I was allowing people to look after me, care for me, as I prepared for battle. About 10 days later I came back to the hospital for the surgery. I had been given a side-room, which is a privilege in our NHS system where you can find yourself in a 30-bed Nightingale ward even today, or at best in a 6-bedded ward in a more modern hospital. It had two small windows that looked out onto the grey concrete facade of the Medical School where I worked. Unless I peered sideways I couldn't see the sky, but if I looked down I could see some small trees reaching up for the light. That evening I had to drink more vanilla-horror fluid, 2 or 3 litres of the stuff, to empty my bowels. I asked why. The bowels had to be empty because if the cancer had spread there they would need to do surgery on them - not a reassuring answer. So I trotted back and forth to the loo and found the relentless emptying wearying. I just wanted it to finish so that I could lie down and sleep. The following morning I felt hollow with hunger as I hadn't eaten since the previous afternoon, but I had to wait until the early afternoon to go down to the operating theatre. My son was with me, and I gradually became more fearful of what was to happen - this might be our last time together was the message I tried to block out. When I was put on the trolley to go down to theatre, he came with me, holding my hand all the way, smiling and reassuring. As we neared the theatre I couldn't hold back the tears. They trickled down my cheeks onto the pillow as he had to let go of me and I felt all human warmth was being torn from me as I passed through the doors away from him. I know I told him that I was all right, some maternal instinct wanting to reassure him that everything was OK, protecting him from my fear however feebly. A theatre nurse took me over. She was dour-looking, but she talked to me, seeing the tears, and I asked her something mundane about her work -back in my behaving sensibly mode. There's no point in giving in to tears and fears in my book. I do better if I can deflect them by ordinary conversation and re-enter the material world, so this is what I was doing, just before the anaesthetist gave me the blessed shot that suddenly took me from consciousness. The Good Patient became the body that was prepared and opened. I know that my guts would have been lifted out or to one side as they went deeper and started the cutting that removed all my reproductive organs, part of the omentum (a fatty apron that covers the abdominal organs) and various lymph nodes. When I awoke there were stitches from my navel down into the pubis, a saline drip in my arm, a drainage tube from the wound and a catheter from my bladder. They get you up and walking the next day, despite all this clutter. The catheter was soon removed and I duly passed water without any trouble, I even perambulated along the corridor to the toilet, or for exercise. But on Day 2 I suddenly felt very weak and dizzy. I sat on the edge of my bed and noticed that my heart was beating so rapidly that I could see its movement against my chest wall. It was arrhythmia, meaning that the heart's usual rhythm was disturbed. I found this out later when I was hooked up to a heart monitor with leads stuck to my chest, and a succession of doctors, leading up to the cardiac registrar had all asked me the same questions: "Has this happened to you before?" "Do you get breathless going up stairs?" "No" I replied. With a drug given via a drip the heart settled down over two days, but then my ileus became paralysed and I couldn't have anything to eat, since that bit of gut sat silent and unmoving. A naso-gastric tube had to be put down my nose into the stomach to drain off stomach acids. The nurses were infinitely kind, but it had to be done, so I swallowed the wretched thing, gagging all the way. It did its job - lots of brown fluid was drawn off, my gut started to gurgle intermittently and the ileus was in business again. By this time a week had elapsed, without any food. Well, at least I was a definite size 12 (US 10) by now, but starving. I ate tentatively, but discovered that nothing wanted to come out of the other end except a little wind. On day 10 the first chemotherapy was given. I felt weak and battered, not at all ready for all this toxic stuff to be put into me, but they were gently insistent. Meanwhile I had had swarms of visitors, enough flowers to go into business as a florist and cards were hanging off every surface they could find purchase on. The chemo drugs were given via a drip, with drugs before and after to control nausea. I had an attack of the dry heaves in the middle of the night, otherwise nothing. My bed was needed, so I had to leave on the 2nd day after chemo. I had made arrangements to go to a convalescent home run by nuns, not feeling able to cope with living at home without much help. The nuns and lay carers were the kindest of women as I struggled with my wretched bowels. I sat on the loo at night, trying to pass the concrete lumps that had accumulated by now. The people at the hospital had neglected to tell me that the chemo and the anti-nausea drugs are mega-constipating. A visiting doctor prescribed something which gave me merciful release, and I paced the pleasant gardens, visualising soft bunny rabbits sliding through my guts with the greatest of ease, hoping this, and the exercise would help. I went home after two weeks and picked up some of the threads of my life. Every three weeks I had two blood tests, one to measure the tumour markers progress and one to check that the white and red cells were not getting too low. I'd been warned that I might get some numbness in my hands and feet owing to damage to the nerve endings and that as the six treatments progressed I would feel more and more tired. Both things came to pass. The chemos made some foods taste weird and metallic, whilst others remained tolerable, and the steroids given beforehand and just after, made me hyper and ravenous, with the result that I would be sitting up in bed, wide awake at 4 a.m. eating cheese and tomato sandwiches. My brain felt permanently fuzzy, and I can't say that this effect has altogether dissipated seven months after chemo finished. When it got to the last two treatments of the six the tiredness really kicked in. My blood counts were low and I had to wait an extra one or two weeks for it to rise enough for treatment to continue. The good news was that after each one, the blood tumour markers went down, from 15,000 to 12,000, way down to the hundreds and finally to 16, which is within the "normal" bounds. Each treatment started with a friend taking me to the hospital for 1 pm. It was surgery day on the ward and the doctors were always busy and in short supply, consequently the drip was often not started until 4pm and went on well into the evening, once until 1 a.m. I elected to stay in overnight for each treatment, which was just as well given all the delays. The nurses had to take great care not to spill any of the Taxol or Carboplatin as they attached them to me intravenously - apparently they should not touch the skin, and when some spilled on the bed linen it was whisked away and the incident written up in the Accident Book. And this was the stuff that was going into my veins! I read, I listened to BBC Radio 4 (the channel that saves sanity, big-time), I listened to tapes on my walkman, I visualised the fluids killing off the cancer cells, but being held back from my hands and feet so as not to cause any nerve damage. I was helped to deal with my cancer and the chemos by a short course at the Bristol Cancer Help Centre between the first and second chemos. Their approach is an holistic one, to help complement conventional treatments, or to take a completely non-conventional path, if that is what one has decided upon. You learn ways to help yourself cope - by means of meditation, visualisation, relaxation, diet, so that you are not just a passive recipient of the burning, cutting and poisoning that is applied to your body. I'm not knocking the cutting and poisoning that I received, - it saved my life, but the quality of life has to be worth saving and these things helped my spirit to survive. They pointed me in directions that had been suppressed or dormant for years and which I am exploring in the afterlife of cancer treatment. I lost all my hair within three weeks of the first chemo, as expected. At first it came out in the comb, then it was on the pillow in the morning , then washed away under the shower. Jill and I went to town and bought me a wig, which was very convincing and even fooled people who knew me pretty well and hardly anyone saw the fuzzy bald pate underneath, and when they did they managed to stay upright ,so I discovered that I am acceptable without a hairstyle after all. After counseling I told my mother the truth about the operation. I had been anxious that she would be upset and that this would create problems for the carers in the home because she could be a difficult "customer" at the best of times. The counseller at Bristol pointed out that the worst that could happen would be that she might drop dead, but given that she had reached the age of 96 she was clearly tough enough to have survived everything that life had so far thrown at her and would most likely survive this. As to her causing trouble, well, that was the carers' problem, not mine. I was increasingly anxious about whether or not to tell and I didn't need that anxiety in my present situation, did I? So why not tell her? So I did, and she looked at me for a moment and said "I've had my suspicions all along". I asked her to pray for me and she said, rather reprovingly, that she did that anyway, but that she would have a Mass said for me. She dealt with it in her own way - I should have known that she would, a nurse for nearly 50 years, the last of her large turbulent family, a tiny stubborn lady. ...A lot later on - December 2000 Since I finished chemo in October 1999, my mother died of bronchopneumonia - "the old person's friend" as she herself used to call it. I retired from work on grounds of ill health, went traveling: the Caribbean; France; Canada. The CA 125 marker started to rise again in July, but I sat it out until November because I felt OK, and when I stopped feeling OK about the rapidly rising numbers, I elected to start chemo again. So here I am, back in the old routine, - just one drug this time, Carboplatin. Here's hoping my cancer hasn't become resistant to it, because the next option is probably Taxol and that's tougher, plus I would lose my hair again - and I would really rather not. But, - if push comes to shove, I'll do it, because I want to be around a bit longer after all.

I was diagnosed in August 1999, just three months after my wedding to a wonderful guy. I had been experiencing vague abdominal discomfort which suddenly changed to hard "grabbing" pain when I stood up or got up in the morning. Because I had just started a new job and my medical insurance wasn't in force yet, I put off seeing a doctor for a few months after the symptoms became really noticeable. I made an appointment within a week of my insurance effective date, and I'm so glad I did.

Fortunately when I picked my medical coverage, co-workers suggested Mayo Clinic; and I listened. My first visit to my primary care physician resulted in a transvaginal ultrasound and referral to a Gyn. Onc., Dr. Javier Magrina. At that time, my abdomen was the size of a 7 month pregnancy. (Looking back at my wedding pictures, I looked like a 50 year old pregnant bride) My surgery was 10 days later and I was diagnosed with Stage IIIc epithelial cell ovarian cancer.

My CA 125 before surgery was 450. After 6 treatments with Taxol and Carboplatin it dropped to 3.9. Second look surgery in May 2000 showed no evidence of disease. I feel very blessed in my medical treatment.

I am now facing the challenge of dealing with how the cancer and chemo have changed my body, along with the possibility of recurrence, which is seldom out of my mind. I try not to dwell on it, but it's there just the same.

UPDATE:

Six Years of Survival

I look back on the time when I wrote my first post and a flood of memories comes over me. I read names, familiar names, some of whom have regrettably passed, and some who are hanging in there. All are brave and beautiful. I have made it to six years with no recurrance, which seems to me like a miracle. I am still dealing with after effects of the chemo, but I can live with that.

Having cancer has changed my whole life. I've learned to speak out, to stand up for myself and most of all to enjoy each and every day. This gift of six years has allowed me to spend six years with a husband I adore, it's brought a grandson who is the light of my life, a new son-in-law, a new daughter-in-law and countless friends. I've learned new hobbies, taken up artistic endeavors I never would have considered before and I even signed a 30-year mortgage. How's that for optimism?

I have also acquainted myself with women who have been diagnosed, or who's loved-ones have faced Ovarian Cancer and said, "It doesn't have to be a death sentence" I actively promote OVCA awareness and have even designed a survivor's bracelet, which I give to patients when I hear of or meet them. As Maya Angelou said in the title of her book, "Wouldn't take Nothin' for my Journey Now."

The diagnosis of cancer was always a "death sentence" to me and yet when the doctor told me I had ovarian cancer I very nonchalantly said, "Oh, the big C" and very calmly discussed the disease. Now I am a first class crybaby (cry when I watch a Snoopy movie) and this was a very unusual reaction for me. I had had NO symptoms except an expanding waistline that I attributed to lack of exercise and too much good food during the winter. I went to see the family physician because my sister poked my abdomen and said, "Why is it so hard"? My family doctor knew immediately and in the next 3 weeks I went through ultrasounds, CT scans, various bowel x-rays and then surgery -- complete abdominal hysterectomy, bilateral salpingo-oophorectomy and omentectomy. During surgery I had 6 liters of ascites fluid removed and then had to have a blood transfusion. I tolerated all this very well in spite of being 63 years old – though very healthy.

Two weeks after surgery I went to the cancer clinic for my appointment with the oncologist. When I entered the waiting room and saw all the people there with turbans, hats, wigs and some with just a few hairs sticking up here and there I just thought, "I don't belong here"! Little was I to know that in 3 weeks I would be ONE OF THEM and much more comfortable in their surroundings. There is a certain camaraderie that builds up in this situation and I was very comforted by it.

I had 6 treatments of Taxol/Cisplatin, which really took the wind out of my sails. I was nauseated and very weak and basically spent 4 months of the treatment lying on a couch in the family room. Oh I did the necessities -- washing, ironing, cooking and even some entertaining but much less than my usual summer gardening, canning etc. I met the criteria for a drug trial, ran it by my doctors, my doctor nephews and decided to go for it. It was Ovarex and there were no side effects from it. However it was double blind so I do not know for sure if I was on it.

This summer I started to have abdominal pains and cramps, which came and went. Oh, I thought, was it the cabbage I ate, or the beans, or sitting in the car too long? Soon I knew it was none of those and I was pretty sure I had recurred. A CT scan confirmed this and I immediately started on Carboplatin alone for 6 treatments. After 4 treatments my CA 125 has dropped from 110 to 54 and I am feeling fine. My oncologist says I am doing well and should have another remission. The last one lasted 26 months so I am hopeful this one will be as long.

I know that all my serenity throughout this journey has been because of my strong faith in God, my belief that I am in God's hands and the prayers of my dear family and friends. I do not know why I got ovarian cancer -- I didn't have any of the risk factors. But, if it had to be someone in my family that got cancer than I am glad it was I instead of one of them.

But this is being written by Jeanne’s mom, Dee.

Jeanne is 18 years old, learning disabled and a senior in high school. Her cancer story began in summer of ’99. She had just taken a job working at a local center for Alzheimer’s patients. She had worked only four days and on Friday morning had gotten up ill so I called to tell them she was sick. She had a severe headache that morning. Over the weekend, she seemed to get better complaining a little of head and back pain. Took her to work on Monday but by 10:00 she called me to come and get her she was sick again. This happened on Tuesday and Wednesday also so I took her to the pediatrician.

Pediatrician checked her ears and said she had a little fluid in them and put her on antibiotics. Jeanne has chronic ear infections and we’ve dealt with fluid in her ears for her entire life so I felt really uncomfortable with this opinion. She tried to finish out the workweek. I would give her Advil at 7:00 a.m. and she would take two with her to take at lunch time so that she could get thru the day. Then she’d come home with a sick headache and sleep a few hours. Some days she would come home with a temp, but after napping would feel cool and clammy. After a week of this, I took her to the pediatrician again. Saw one of the other pedes who said "Oh yeah, it’s a virus going around and may last a week to two (she’d already been sick two weeks). By now Jeanne’s still trying to work, but I’m having to pick her up at Noon each day. When I get there, she’s sitting with her head lying on a table and wrapped in a blanket. After a week of this, we take her back to pediatrician and see yet another pede. She does some routine blood work which comes back normal and says she thinks it’s a "sinus infection". Now Jeanne’s back is hurting as bad as her head. She’s taking lots of Advil, trying to work because we’re pretty sure it’s not contagious. Sleeps a lot and eats little. Using ice packs on her head and hot water bottle on her back. Another week and we’re back in the doctor’s office. Yet another pede finds nothing wrong with her but does some more extensive blood work with those results due back in a week. I tell the pede she’s been sick all summer and we need to get this taken care of before school starts. School starts now. She tries to go the first day, but I have to pick her up. She’s sick. After that I sent her to school only half days. She runs a temperature off and on but it’s always normal when we get to the doctor’s office. Blood tests are back. Normal except for an elevated SED rate. Even though it’s double what it should be, dr. not alarmed. Says it can measure any inflammation in your body from a thorn in your finger to arthritis. Will repeat the blood work just to see if the SED rate is staying same or changing. Will have those results back in a week. Jeanne is still going to school half days. We’ve been at the pediatrician’s office weekly throughout most of July, August and now beginning September. Blood tests back again. SED rate is now more than triple what it should be. Dr. doesn’t seem too concerned, but orders brain, pelvic and abdominal MRI’s/CT scans. Those to be done in about a week.

Take Jeanne to clinic for theses tests. Radiologist calls me back into his office and says something has shown up on the abdominal scan. I asked "You mean something other than the cyst on her right kidney"? He says yes, a large mass. I’m thinking large—like golf ball sized. He calls the pediatrician, who calls the gyno. It is Friday and the gyno wants to see Jeanne on Monday.

Dr. Brown works Jeanne in before any of her regularly scheduled patients. It’s 7:30 a.m. She performs the pelvic and tells me that Jeanne has a football size mass around the right ovary. She says we have a chance that this is not cancer, but I want a gyno onc present for the surgery. There are so few gyno onc’s in Louisville that surgery can’t be scheduled for two weeks. In the meantime, CA 125 is done and is normal.

Two weeks later, surgery performed. Cancer is confirmed. The gyno onco who is present isn’t qualified for something like this and calls in a more experienced partner. Jeanne had a right oophorectomy. Now things get confusing because the gyno tells me things are really bad and I should be prepared for the worst scenario. The gyno onc tells me things may not be so bad and six rounds of chemo could take care of it. I respect the gyno, but, of course, prefer to believe the gyno onc. I don’t think either dr. has changed their opinion of the prognosis.

As of this time, Jeanne had 3 rounds of chemo, cisplatin, VP-16 and bleomycin. Got thru chemo, lost her hair and has grown it back. Physically is doing really really great! Almost seemed harder on her psychologically/emotionally. Depression set in a few months after chemo ended and the psychologist recommended Zoloft. I think the psychologist and Jeanne’s involvement with a local support group here in Louisville have helped a great deal.

Last scans have been clean. Jeanne sees the gyno next week and we’ll see if she’s more optimistic than she was this time last year.

Looking back, I don’t know what more I could have done to get her diagnosed earlier. I just am so glad we were persistent even though the Pediatarician’s office was beginning to make me feel foolish. And am so lucky that the gyno felt compelled to have the gyno onc present at surgery.

We count our blessings and try to make the most of every day that passes.

Too young, too healthy, too many clueless doctors...

My journey with cancer began in 1991 at the age of 39. I had just chosen to see a new ob/gyn due to an insurance change. The new doctor ordered a baseline mamogram for me...very soon after I was to learn that I had an early stage brca. I was very thankful for the timing of the mamogram because not long after that I recall there being a recommendation from one national organization minimizing the necessity of a baseline mamogram on women so young. I still remember the radiation oncologist saying to me after our first visit that this just didn't make sense...I was too young, too healthy...a negative answer to all the known risk factors. So, I had a lumpectomy, followed up with radiation and tamoxifen...had a wonderful prognosis and fully expected to live a very long, healthy life. Approximately six months following radiation treatment I had an appt. with this same radiaion oncologist...I told him of many distressing symptoms I was experiencing. He suggested that I return to my gyn/onc as my complaints should be checked out. My complaints were bloating, severe cramping from mid-cycle and all through my menstrual period, irregularity with my menstrual cycle, and bowel problems. The ob/gyn did an obligatory pelvic exam and had me meet him in his office after dressing. He told me that everything seemed fine because he couldn't feel anything. I questioned this immediately...shouldn't I have a sonogram?...I'd never had one before...surely if doctors could feel all problems/diseases there would be no need for all the sophisticated testing that is available. No...he was certain that I was just fine...tamoxifen was probably causing some of my problems...he'd see me in 5-6 mos. for my routine pap smear. From that point forward I began having other pain/symptoms...twice being severe enough to land me in an emergeny room. Maybe gallbladder...although I appeared to be at low-risk for gallbladder disease...so a sonogram for gallbladder alone was ordered. No gallbladder disease! Returned from a trip to Mexico and shortly after landed again in the ER...much upper abdominal pain...even hurt to breathe...almost like a "stitch in the side" that you get as a kid when you run for too long. Since primary care physician was getting frustrated at his inability to dx the problem he referred me to a surgeon/colleague who suddenly suspected some type of parasite from Mexico to be the culprit. Wrong again! At some point during all this another sonogram was done, but not below the waist...I think they were still looking for gallstones or something like that...suddenly an abnormality is seen on one lobe of my liver...oh, dear, that must be the cause of all this pain. So now on to CT scans and specialized CT scans only to find that the abnormality is a hemangeoma...certainly not the cause of my problems. About this time, I was tiring of all the doctoring, and these docs are scratching their heads and acting clueless. I decided to be thankful that my liver was not unhealthy and everything was going to be fine. When time came in Dec. for my annual pelvic exam/pap smear I decided to try a new young ob/gyn due to my dissatisfaction with the July visit to the other gyn. He took so much time with me as a new patient...many "interview" questions about my health, family histories, concerns, and so on...then of course the dreaded exam...whoops, your ovaries feel enlarged!...let's do a pelvic sonogram right here in the office...yes, you have cyst(s) on your ovaries...I'll see you in 4 wks. because you are a new patient and for some women cysts come and cysts go. Four weeks later another pelvic sonogram that literally paled the young, new doctor...I must have surgery he tells me...would be best to have another doctor do this...I should seen a gyn/oncologist before proceeding. WHAT COULD HE POSSIBLY BE TALKING ABOUT? Well, from this point, of course, I had surgery (TAH/BSO, diagnosis Stage IIIc epithileal ovca, and I was just 41 yrs. old. I wish I could remember how many times caregivers in that hospital would say "you're too young and too healthy to have this disease!" Sure wish the ovarian cancer that had found host in my body would have known that I was too young and healthy for it! I know this story is very long and I will stop shortly, but there is one more very important thing I must tell. My primary care physician visited at the hospital following my surgery and was so disturbed that he had missed this disease...it never occurred to him to look below the waist at gyn problems because the first gyn had sent him a report indicating everything seemed just dandy. He truly wasn't blaming anyone else...rather he was disgusted with himself for accepting that report since indeed he should have been suspicious of some of my symptoms/complaints as a gyn disorder. He was certain to be far more cautious in the future with these kind of complaints! All of this seems like a lifetime ago to me...I am now 9 yrs. away from the brca diagnosis and over 7 yrs. from the ovca diagnosis. Unfortunately, I had an ovca recurrence after a 5+ yr. remission...so the battle and story continue.

Presently I participate in a clinical trial and pray daily for doctors and researchers involved with ovca. There must be a way to rid this disease from my body (as well as all my ovca sistas) and allow me to stay where I need to be for right now...raising my children and being the healthy mom they deserve.

I was dx in March 98 with endoca stage I………with archetypal blind panic I wanted the TAH/BSO retroactive…….this is the first most common mistake made by the newbie!...........an ob/gyn performed the surgery. He did not take the ca-125 prior to surgery, he took no biopsies and performed the Pfannenstiel incision….thereby unable to examine the upper abdomen………….when the path report came back he told me "the good news is that the endo ca was stage I in the uterus, but the bad news is that we have a met to the rt ovary"…….washings were not conclusive. He recommended radiation to begin in 4 weeks. I am a librarian in a small public library on the south coast of Oregon albeit originally from NY…(hence the attitude, no doubt)……I questioned his dx. I sat on the floor of the library late one night… with Tabor's and Merck in hand. The next day I called all the womens' health centers in Oregon looking for an oncologist who specialized in gyn cancers. Imagine my surprise to learn of gynecologic oncology!......I was able to refer myself to one…..no easy feat…….fortunately this gyn/onc… 150 miles away… accessed the original path slides. She dx synchronous primaries and since I had been unstaged she tx with 6 taxol/carbo. In addition her pathologist reported clear cell in addition to the original endometrioid cell type and with positive washings. I was left with stage X and no way of knowing if the ca-125 was a viable marker for me (it is often not for clear cell). Of course I wrote to the state medical board…….NOT because I expected anything to result but because I wanted to submit copies to all the local ob/gyns and hospitals. I have continued to advocate that only gynecologic oncologists should perform surgery on all gyn cancer. Now if only the SGO would lobby to legislate! Thanks for taking the time to read to the end. Suz

Read an essay by Suz

SUZ: 53, clear cell, dual primaries (endoca), wrong surgery 3/20/98 by ob/gyn (stage X) age 51, 6 taxol/carbo, NED at sls 9/14/98...chutzpa alive and well in Bandon OR

My sister died of ovca in 1993, so I should perhaps been more alert. My gyn knew my family history - sister, Grandmother died of breast cancer, mother having 'pelvic' cancer to which she would never admit (surgery, no radiation, no chemo but lived another 20 years). In October of '97 I saw my internist for urinary tract infection. After antibiotics cleared infection, I still felt pressure to void constantly and felt I had increased in girth and seemed to be gaining weight though not changing eating habits. He ordered CT scan which detected mass. He sent me to gyn who I had seen at the end of June and had not detected anything, nor had she ordered ca125. She did order both ca125 which was over 1,000 and ultrasound and contacted a gyn oncologist who performed surgery Dec 31, 1997. Mass was 20 x 15 x 10 cm. I had gene testing this past April and there is a damaged brca1 gene, and my niece then has been tested with same result. I am registered and sent information to the Gilda Radner ovca research inst. at Roswell Park.

I was 44 when dx. with ovca, 3C. I had a hysterectomy, both ovaries removed, also appendix and a bowel resection. Just eked by with not getting a colostomy. The only symptoms I had , were extreme fatigue, lots of gas, and bowel problems. Pain during intercourse and occasionally break through bleeding. I attributed these symptoms to peri-menopause. During my routine annual visit to my gyn. , she found an enlarged ovary, and immediately gave me an internal ultrasound. Sent me for a ca125 and then directed me to an onc/gyn at the Moffit cancer center in FL. My surgeon did a great job debulking me. I had 6 treatments of cisplatin and taxol. I was an overnight guest at the hospital, because they did the treatment slowly. a 24 hour drip of the taxol, and 6 hrs of cisplatin. Personally, the chemo was a nightmare for me. I was a walking zombie. Pre cancer I worked as a fitness director, personal trainer, body builder. After, I changed my whole life. No longer, is my physical body as important to me. Spirituality, love, family and friends have become , who I am. It has been difficult for me, because during this cancer time, my husband of 27 years had an affair, fell in love with her, and is presently co-habitating with her. My father recently died, and it has been stressful. Relocating from Fl to Wi........... Well, enough said. During the last 4 months, my ca125 is rising, and I am beginning to feel different physically. Its been a little over 2 years, I am now 46, living with my cats, finches, and golf fish. Presently, not working, and soon to be on Medicare. I do what I do to survive, in a world, that is so totally different than the before cancer life. It is wonderful in the sense that I am near my family, and friends. I have more faith than ever, and know, that God has me in the palm of his hand, no matter what. I wish all of you ladies out there with this ovca, the peace and health you so deserve. Thank you , cheryl schmidt

My abbreviated history is that I have 3 primaries, omentum, fallopian and ovarian. This complicated matters somewhat, but the upshot is that I would prefer many, to mets! I do have to live, however, with the fear that if my body created three cancers, what is to stop it from continuing on? My grade was 3, but the stage was either 1C or 2C.

At this time I am in remission for a little over three years. I had 6 rounds of Taxol/Carboplatin/Cisplatin. Four Carbo was about all I could take, so we switched to Cisplatin. SLS found me with NED, and I continue in my life with new attitudes and visions for which having cancer seems to be famous. This past August I had to have major surgery for pelvic reconstruction which was probably due to the lack of support from everything that has been removed.

I consider myself fortunate in my experience with the healthcare system. Firstly, for my own healing, I'd like to mention 3 names. Dr. Wong at Salem Hospital where I went for an ER visit with lower abdominal pain, urged me to do follow-up with my gynecologist, even after the radiologist diagnosed me with constipation. It is because of his suggestion that I did just that.

My visit with the gynecologist was embarrassing to me because I had taken a laxative and no longer had symptoms. She disregarded my dismissal of the urgency and sent me in for an Ultra-Sound immediately. Two masses were identified, so I was off to an MRI. From there it was a CT-Scan. This wonderful doctor, Dr. Betsy August, turned me over to the gyn/onc immediately, just to be certain that everything looked benign.

My Ovary Angel, Dr. Annekathryn Goodman, has been my doctor and my lifeline since. I needn't really give medical details, except that I wasn't diagnosed with ovca until the surgery. So, I woke up from anesthesia with a new, shocking addition to my view of myself. Very sobering. This took place at Mass. General Hospital.

I have suffered with some paranoia after treatment, finding every little symptom of anything, and thinking it may be cancer. My team has been extremely patient, supportive and attentive to each complaint. I was never discouraged or dismissed as hysterical or over-reactive. This has been very important in my recovery. Now that has ebbed, and I am returning to my normal accepting self of symptoms of aging and daily stress. Before diagnosis, I never paid attention to minor aches and pains and was hardly ever to never, sick. I am gratefully returning to that attitude.

So, my kudos to Dr. Wong, resident; Dr. Betsy August, Ob/gyn; and Dr. Annekathryn Goodman, gyn/onc, head of my team.

This part of my life has been sobering and spiritually uplifting at the same time. I remain changed for the better, living in gratitude for my current remission and trying to give back what I have been given by sharing my hope and success with other sufferers. Pain has a short memory. I remember it, but the feelings don't accompany the memory. Remembering this now helps me through other painful experiences. Tis a slippery slope!

I am age 67 and I had my fallopian tubes tied in 1975 and a hysterectomy in 1991. I had five pregnancies and so should have been low risk for ovarian cancer. I began having bowel problems in 1994 and after having a colonoscopy, I was diagnosed with irritable bowel syndrome. I began a diet that was dairy free, ate no salad or raw fruit. After another year, I had another colonoscopy. I was told everything was fine. I saw my gynecologist every year and told him about the irritable bowel syndrome. I told my internist about my irritable bowel syndrome. I continued to have bouts of constipation, gas and diarrhea. I fractured my ankle 8/99 and was examined extensively in the hospital where the ankle was operated on. I was again in surgery 8/99 and again examined presurgically. I went for a routine gyn visit 1/00 and the gyn felt a mass. He quickly ordered a transvaginal sonogram and four days later I was debulked for adenocarcinoma stage 3c. I had a 5 cm tumor wrapped around the bladder and colon. I regret that I accepted the diagnosis of irritable bowel syndrome and did not investigate further. Perhaps I would have learned that I could demand a transvaginal sonogram sooner and catch this disease in stage one. But I had seen my internist, my gynecologist, and a gastroenterologist. No one ever mentioned that my symptoms might have been ovarian cancer and my life threatened by it.

My name is Linda Sharp. I am from the Eastern Shore of Maryland. I was diagnosed with breast cancer in May, 1999 after a normal mammogram on March 3, 1999 and after finding a lump during a self-breast exam. My Gyn, a nurse practitioner was a great listener and thanks to her, no time was wasted getting a surgeon's opinion, another mammogram and sonogram. After a lumpectomy that was supposed to last 20 minutes, that indeed lasted 1 hour, with lots of blood everywhere, I still was too uneducated about cancer to know that I should be concerned. Needless to say, six days later I received a call on my cell phone while at work from the surgeon saying "I am sorry Mrs. Sharp, but it is malignant and it is bad". I guess the "it was bad" part could have been left out but it wasn't. Scared to death, I called my nurse practitioner and she had my husband and myself come to her office immediately. Being the great person she is, she offered to come get me, knowing how upset I was. Anyway, she sent me to Dr. >>>>> I have drawn a blank in Belair and then a second opinion to Dr. Niel Friedman. First doctor said immediately bilateral mastectomy, one simple, one modified radical. Dr. Friedman suggested a modified radical but not the second breast. I held steady and opted for both, having Dr. Friedman do it and Dr. Chang doing the reconstruction. I was lucky, no lymph node involvement, but very very aggressive cancer so opted for chemo. Finished chemo Adriamyicin and Cytoxan in October 1999. By the end of November my oncologist was releasing me for one year. Told me I was cured even though I told him that I had a lot of lower back pain and my period had lasted 17 days which was extremely unusual for me, never more than four days. And although I told him this along with cramps down my legs, he told me that it was due to the chemo and to forget it and go on with life. At first I was happy with his opinion but after a couple of days, and the continued symptoms, I called my nurse practitioner again and like always she took no chances and ordered a transvaginal sonogram, which found a complex septated mass on my right ovary. She ordered a CA125 and sent me directly to an OBGYN for a second opinion. The CA125 came back "37" so close to normal but not a guaranty either way. The doctor asked me what I wanted to do and I told him I wanted it removed and I wanted it removed that day. He said he couldn't do it that day but would do it at 6 AM the next morning or I could wait and see a gyn oncologist, but I couldn't wait, it was Christmas time and I was scheduled for surgery for the following week to have my breast reconstruction finished. Needless to say, no breast reconstruction was done for a long time. I just had my implants put in this July 2000. I had a hysterectomy, oophorectomy, etc. and it was staged at Ovarian Cancer, Stage 3A, Grade 2, papillary (the most common ovarian cancer).

Today I saw Dr. McGuire and I am officially in remission as of May, 2000. So far everything is NED and my CA125 is around 9. It was as low as 5 at one time but I have been under an extreme amount of stress lately.

I will begin that I am 49 years old. June 99 I was experienced gastrointestinal discomforts to the point of vomiting until the pains subsided. There were only two episodes but enough to send me to the personal physician. I did have a distended abdomen at that point and irregular periods, but assumed they were premenopausal symptoms. I requested to have a ultrasound performed on the abdomen and pelvic area. My doctor agreed and I had the CT scan performed. During the procedure they had to do a transvaginal CT inasmuch as they couldn't find the right ovary. As it turns out it was determined that I had a mass of ll cm. I called my gynecologist who immediately recommened an oncologist to review my films. I saw him in September 99 and was told that I needed a complete hysterectomy and had a 50/50 chance of ovarian cancer. My CA 125 was 182. I scheduled surgery for October 19, 1999. The hysterectomy was performed and there was a l8 cm. tumor on the left ovary, tumor on the right ovary, less than l cm. tumor on the diaphram. Flakings on the bowel, bladder, omentum. Was Staged 3. I must note that there is no cancer history in my family. I have had three pregnancies, really no prerequisites for ovarian cancer. After surgery and prior to my first chemo, 6 rounds of taxol/carboplatin my CA l25 was 97. After first round of chemo my CA 125 went to 7 and has remained there. I completed my 6 rounds on March 2, 2000 and continue to maintain a CA 125 between 5-7. I just had my 9 month check up and it was 6.4. I have had two CT scans which are clear, a chest x ray which is clear and just had a colonoscopy done and that was clear. Of course, every three months I was in anxiousness hoping that I am not out of remission.

I was diagnosed in 92 with stage 3 grade 3 transitional cell. I was misdiagnosed for almost 4 years. The way they found mine finally was they thought that I had a kidney infection. My family doc. for 3 years said that I had endo. which by the way was never found when I was cut open. Anyway, I had left flank pain for 4 days, they were treating for kidney infection, finally sent me for an ivp, took 6 hrs. for the dye to go thru the left kidney, sent me down for ultrasound, all they could see was a mass, was sent to present onc, who did surgery. my ovar. was the size of grapefruits, lymph node by left kidney was the size of walnut, had shut my left kidney down to 10% (that is why all the pain) had 7 year remission, my #'s started to do funny things at 5 years, begged my onc. to put me on mantenence pills, she refused on 7 year check up it was back, and I have been on chemo of some type now for almost two years now because my doc. would not do what I wanted. After you read all of our letters, I hope that if you doc.'s learn anything at all is to LISTEN to your patients.WE know our body better than any of ya'll.

We are terribly sad to let our readers know that Sheryl passed away on October 16, 2004, 7 years after being diagnosed with ovarian cancer in Seattle.

March 97 I had pain radiating down my leg and doctor # 1 told me it was sciatica and sent me home to rest. After a week and a trip to the chiropractor it had worsened and a doppler found that it was actually a blood clot, deep vein thrombosis. (not known at that time that it was caused by a tumor.)After a week on blood thinners in the hospital, Dr #1 put me on more blood thinners and sent me on my way.

I developed stomach problems and was unable to tolerate citrus. When I told Dr #1,he told me that "some people can not play basketball" and put me antacids.

July 97 I went for my annual exam to the gynecologist that had put me on hormones to control monthly pain. By that time, my back hurt so bad that I asked for pain killers so that I could drive home. My abdomen was distended, I was nauseous, had headaches and increasing abdominal pain. Doctor #2 was able to palpitate a pelvic mass , did a CA 125 and ultrasound. They could not see my left ovary on the ultrasound and assumed that I must have a bleeding cyst due to the blood thinners. They scheduled me to have an exploratory surgery in 6 weeks, after doctor #2 was to return from vacation. My CA 125 came back at 28 and I was told that I did not have cancer because the CA125 was in the "normal range".

I went for a second opinion. Dr. # 3 did and exam and requested the ultrasounds from Dr. #2. Now I have a fever of 100+, increasing abdominal pain, nausea and passing blood clots the size of eggs from a period that started 8 days earlier. I was unable to urinate or have a bowel movement. It's now August 7th I've lost 18 pounds in 6 weeks. I went back to Dr. #2 and he told me to take Philips milk of magnesia and he moved my surgery up one week.

I told Dr. #3 about my exam and he said that he still did not have my films and for me to give it a try. Three weeks after the request, I was told by doctor #2 that they do not send ultra sound pictures , I could get copies of them , but that they wouldn't do me any good because you can't read the copies very well. Dr. #3 ordered another ultrasound for me and the radiologist was so concerned with what she saw she told me to go to my doctor's immediately. Her receptionist put me in a wheel chair and took me over to see Dr. #3 and dropped me off. His receptionist told me that he was not there and that he had an appointment with me next week and that he would see me then.

I was hysterical at this point. I was crying, in tremendous pain, confused, unable to hold up my body weight. I left taking a few steps and restingcontinuing on to my car expecting to return the following week for my appointment. The radiologist saw me staggering in the street and took me to the emergency room of the hospital where I met Dr #4. I had a protime of 66 which means that if I poked my finger with a pin, it would take 66 seconds for it to stop bleeding. I stayed over night in the hospital and was put on vitamin K and released the next day after a second look doppler discovered that I no longer had a blood clot , the vein had disintegrated, and I should not have still been on blood thinners. Dr. #2 had told me that I could not go off of blood thinners to have any surgery for my "heavy period" because " Blood clots are life threatening and women problems are not".

So now that I'm off of the blood thinners Dr. #3 wanted to wait 3 weeks to see if the "bleeding cyst" would shrink. In the mean time Dr. # 4 suggested that I see Dr. #5 for my other symptoms. My parents came to visit and could not believe the condition I was in. My father took me to see Dr. #5 and in 10 minutes she had me over at the hospital with the name of the Gyn-onc that I would soon be meeting. On August 21, 1997 I had a total abdominal hysterectomy and bilateral salingo-oophrectomy, resection of retropertitoneal nodal mass, resection of multiple cul-de-sac nodules, including radical dissection and biopsy of the diaphragm. In other words, surgery for stage 111c clear cell carcinoma. Before my surgery, Dr #3 came in to see me while Dr#5 was there.Dr#3 explained to her that I as his patient and that there was no hurry for surgery because my CA 125 was in the "normal range." Dr. #5 then explained to him that she was now my doctor and that she didn't care what my CA 125 was and fired him at my bedside.

You would think that that would be the end of the story.

First the insurance company that I had at the time of diagnosis tried to have a different doctor and hospital do my second look surgery. I refused to change and they decided to let me keep the doctor that had done the 1st surgery and treatments even though he was not one of their preferred doctors. After my second look surgery, I changed to an insurance company that contracted with my gyn-onc. The insurance company told me that as long as I had a referral , I could continue to see him. So I switched. Then the clinic that my internist works at denied my referral and told me that now that my critical care was over, I no longer need to see a specialist and could see one of their med-oncs.

I had one visit with their med-onc , Dr. #6, and fired him immediately. He did not do a pelvic on me. He wanted to "judge my cancer on how I was feeling". I asked him about the different cell types and how they respond to chemo, he told me that there was very little difference.When I asked how many OVCA patients he had had, he couldn't come up with a number, but that cancer was cancer and that he would treat a patient with lung cancer the same as someone with Ovarian cancer. Dr #6 ordered a CA 125. It had risen to 17 after being 11 for almost a year. I told the receptionist that gave me the results that I was concerned and she said not to worry because "anything below 38 is in the "normal range".

I left the office crying. Thankfully it was a bug I had brought back from Mexico that had raised my CA 125.

I believe the reasons for the wait and see attitude was

1. I did not take fertility drugs
2. There is no history of OVCA in my family
3. My CA 125 was in the "Normal range"
4. I had 2 healthy children
5. My tubes were tied
6. I had taken birth control pills
7. I was 39 years old

Thinking about Diagnosis
October 4, 2000. The air was cool on my face but the sun warm on my back as I grabbed the handrail and allowed myself to look down some 400 feet to the bay waters below. A perfect autumn day. Trees almost at peak color-yellow, orange, red, russet. A Polaroid sky reflected in the blue-green water. I was on a walkway above Green Bay, a few feet from a sheer limestone cliff, one hand on the rail, the other steadying myself on my husband's belt. The vertigo was strong, my muscles tensed. I started to cry. This is the kind of place where I want my ashes scattered when I die. If you want to scatter them and not keep them. Or do you want to put them in the flower garden?

For almost two years I have been thinking about death, about my dying, about what life would be like for John and our two adult children. It was exactly two years ago that we last spent some get-away days in this rural resort area in northern Wisconsin. Then I was energetic, fit, content with life. We hiked for hours in the woods, eating impromptu picnics. We explored, walking to the top of towers to take photos, making our way through thigh-high lake waters across a causeway to visit a lighthouse. No thoughts of death then.

Just some vague symptoms, that had prompted me to make an appointment with my gynecologist a few days after our vacation. Fully menopausal, I thought maybe my hormones needed to be adjusted. I was concerned about my thickening middle, which appeared despite my 3-4 times per week aerobic exercise. I had gotten disgusted, shopping at the mall a few weeks earlier with my daughter. Nothing seemed to fit, and I didn't like the way I looked. Looking back, I realize now that I also had been experiencing some heartburn. That was all. No other signs, no symptoms, no warning that everything in my life as I knew it would change in the several days following that office visit.

During the breast exam, I said as I always did during routine exams and at my yearly mammogram, I don't worry so much about breast cancer, because I know that's usually curable. I worry about ovarian cancer, because my mother died of it. During the internal exam, the doctor said, "Hmm, I don't really feel something, but given your family history, I'm going to order a transvaginal ultrasound." A few days later during the exam, the technician abruptly left the room and returned with a doctor, who finished the exam. He whistled through his teeth and hummed a bit, and did not engage me in any conversation until he was finished. "Well, I know you are anxious to get the results. I'll tell you what. I'm going to just call your gynecologist with the results, instead of using the usual two-day turn-around system."

I knew then.I don't remember getting dressed, or driving from Froedtert Hospital toward Alverno College. I knew then. I thought about my Mom, who died at age 54; I was 53 then. I realized that I had always thought I would be "lucky" if I lived longer than my mother did. Would I now?

I couldn't go straight back to work. I detoured to a coffee shop, and sat for a long while, not really thinking. I felt punched out. I slumped. I have no idea how long I sat there. The sure knowledge that I had cancer carved a cavern in me. Inside was emptiness, a cold void with jagged edges. Darkness. I acknowledged its presence and then went numb.

I lost focus. I narrowed my thoughts to the immediate. I could not bear to be aware of anything beyond the feel of the Einstein's cup in my hand, the smell and taste of warm, caramel-colored decaf coffee. I shoved everything else out of the way.

I thought about John and whether I could track him down where he was traveling. I couldn't tell him this on the phone. I thought about our daughter, a senior at the state university some 70 miles away. What day was it? Usually I could retrieve Rebecca's class schedule easily from the back of my mind; not today. Would she, like me, lose her mother before she ever really got to enjoy her on an adult basis? I thought about our son, some 300 miles away in another state and settling into a new apartment and new job, near the woman he loved. Would David marry Meg? Would I live long enough to see grandchildren?

When I got to the office, there was a message from my gynecologist. I called her and she made an urgent recommendation that I see the gynecologic oncologist for a surgery consult. In fact, she had already spoken to him and set up the appointment for 3:00. It was now 1:00. I debated again about calling my husband. Soon enough to share the terror.

So I kept the appointment by myself. I took in the careful explanation of the surgical procedures involved, the possible risks, the carefully-phrased need to "rule out" cancer. I took an intellectual interest in everything being explained, tamping down tears and fright. This was Friday. Surgery would be Monday at 9.00 a.m. I spent the weekend trying to reassure everybody else. Isn't it better that "it" will be gone on Monday, instead of still growing here inside me?

I was not surprised when I woke up from surgery and saw my husband's face. He gently confirmed the diagnosis.That night or the next night, maybe, very late, I woke to hear a woman screaming, sobbing, inconsolable. I listened as the charge nurse called a chaplain, explaining that a patient had gotten bad news about ovarian cancer and needed help right away. I pitied the woman, thinking it was too bad she wasn't ready for the news when it came. My own rage and tears came later, during treatment. I railed at the injustice, the bad timing. I cried for what I was losing, for what would never be.

But at first I went stolidly on. What came next was chemo. I went after it in a systematic way, seeing it as a one-time deal, six rounds and it would end and I would be "clean" and could begin my life after cancer. I was wrong wrong wrong. Two years later, I can see how wrong. For me, there is no life after cancer. The consideration of death is part of my thinking now. And this day, I was walking in the woods, enjoying the change of season. The cliff was indomitable: stark and ungiving. The bay waters lapped gently on white rocks. I inched back from the edge of the walkway. The diagnosis is clear: I am living with advanced stage fallopian tube cancer.

In April of 1993,I had just come home from a skiing trip to Colorado, where I skied everyday and felt great. I had my annual exam, and my gyn felt an enlarged ovary. That was Thursday, on Friday I has my US, on Monday I met with the doctor again, and on Wed I had surgery. Luckily, without my knowing there was such a thing, he called in a gyn-onc. The only symptom I can think of, even looking back, is that I had a nerve pain shoot down one leg when having sex in a particular position (blush), so the tumor must have been up against that nerve. I had no gastrointestinal sxs, no weight change, and no misdiagnosis. My gyn will always be my hero, even though he was the one to sit on my bed the morning after surgery and tell me it was cancer. I was stage III, with tumor of the left ovary, fallopian tube, omentum, diaphragm, and in a couple of lymph nodes.

Since then, I have had a 2 year remission, followed by three recurrences. I have been on cisplatin/cytoxan, taxol, carbo/taxol, topotecan, gemzar, gemzar/cisplat, weekly taxol, gemzar/5-FU, taxotere, and gemzar/taxol. In November, I am scheduled for surgery to remove a 3cm pelvic mass, and hope that soon I will have some chemo-free time.

I have been lucky enough to feel well and be able to keep working throughout the last 7 years, but I am getting weary of my "routine" of constant chemotherapy.

I was diagnosed with ovarian cancer 3/28/97. I am Stage III and have gone through 3 Major Surgeries and 6 minors ones. After the first six months of chemo I had to have a line pick put in since my veins were no longer useful. After six months of that (chemo for a straight year) I formed a blood clot around the line pick and then had a port a cath put in. I have gone through 8 different chemos plus P53 gene therapy at UCLA. But to no avail nothing so far has worked on me. My doctor David Chan is an excellent doctor and stays on top of all new treatments and is trying everything on me. I work 40 hours a week and as of April 8, 2001 I will celebrate (if you want to call it that) four years of surviving this dreadful disease. Everyone says I don't look sick nor act sick, but I believe in a very positive attitude and believe God has gotten me through all this. I don't know if I will ever face a remission but as long as chemo can keep me alive and give me a chance of having a lot of years ahead of me I will be grateful, as long as I can hang on, hopefully something new may come along that will work. I will do anything I can to bring Ovarian Cancer to the forefront so other women do not have to go through what I and thousands of other have had to go through. I'm 57 years old (been told I don't look it) and have a great lust for life. Women need to know there is hope and take each day as it comes and take time to smell the flowers. Life is precious and it's too bad we don't understand that until we get sick. I hope more attention will be given to Ovarian Cancer and I will keep writing to Rosie, Oprah, and The View until someone will finally help us raise money for research since our government is more interested in helping other countries instead of our sick here. I walked in the Revlon Run Walk in 1999 which is the only Breast/Ovarian Cancer runwalk that I know of. But we need more than just them to help research. I'm alive and kicking and enjoying life and enjoying my three grandchildren whom I hope I will see grow up.

In March 2000, I had not been to any kind of doctor for three years except for the dentist and optometrist. I needed to choose new doctors who were participating providers on my health plan, to cut down on out-of-pocket expenses, and this was easy to put off. I thought of myself as quite healthy and youthful at age 51. I got a list of participating providers and made two appointments in March, with a podiatrist and a gynecologist. The podiatrist visit came first, and I was shocked to find out that the pain in my toes was arthritis. Then came the gynecologist appointment. The doctor could feel on the manual exam that there was a large swelling, which he said may have been either the ovary or the intestines. He said I needed an ultrasound as soon as possible. Two days later I had that--complete abdominal, pelvic, and transvaginal (also blood work). While having the ultrasound, I knew it was not routine, as the technician took about a thousand pictures and gave only vague answers to my simple questions. After getting dressed, I reported as requested to the gynecologist, whose office is in the same building, and he immediately went to look at the slides and asked me to wait. Obviously not routine. After the gynecologist returned, he sat down with me and explained that I had complex masses on both ovaries and that I would need surgery as soon as possible. He avoided the word "cancer" until I used it, and he was very gentle and tactful. It seemed he was almost more upset than I was, to have to give me such news when we were so newly acquainted. I was just in a state of shock--after all, I was "such a healthy person" and had no family history to prepare me for this. I felt like asking him, "Who are you talking to?" There was also a young intern in the room, who took his cue from the gynecologist and patted me on the arm sympathetically. At a later appointment, the gynecologist went over the possibilities in much more detail before asking me to sign a surgical consent form. Two weeks later I had a hysterectomy with removal of the ovaries, tubes, and omentum. This was performed by the same gynecologist and a gynecological oncologist of his choice (very good choice). The path report indicated a clear cell carcinoma on one of the tumors, Stage 1-C. The largest dimension of that tumor was 22 cm, but most of it was endometrial and just a small part was malignant. These doctors also called in a bowel surgeon who removed a foot-long section of bowel along with my appendix. I was later told that it looked diseased, but from endometriosis rather than cancer. In fact, it tested negative for cancer.

The first thing I remember on coming out of the anesthesia in the recovery room was someone's voice behind me saying, "She had a bowel resection." My first thought was, "That means the cancer was at an advanced stage and had spread!" You can imagine my relief on finding out that this wasn't the case. Later, my thought was that staffers should be more careful what they say around patients, who may be more alert than they appear. I have finished a round of six Taxol/carboplatin treatments and am doing well, with a clear CT scan as of October 2000. I now realize that I had symptoms that should have been warnings, but they were all too easy to explain away. I had some irregular menstrual bleeding--"peri-menopause." I had heavy bleeding and noticeable bloating--"always did." I had occasional digestive upsets--"something I ate." I had an enlarged abdomen--"runs in my family." I had some form of "morning sickness" that made me gag when brushing my teeth or scooping cat litter in the morning--never did explain that. I am very thankful to God for the timing of the exam. The tumor was enlarged enough to alert the doctor to the need for an ultrasound, but had not progressed to a late stage. I praise my doctors for the top-notch care I have received. I am blessed in comparison with some other ovarian cancer patients who have suffered pain and other symptoms for years without a proper diagnosis. I now preach to other women to have their annual checkups, as I did not-- "Do as I say, not as I did."

I, myself do not have cancer, but my sister does. She like a lot of the people whose testimonies I have just read had all the classic symptoms but was told that she had Diverticulitis or a bowel obstruction. No tests were ever done to prove either diagnosis. She like so many of us trusted her Doctor. This went on for several months until she started to bloat. I suggested that she get a second opinion, but she decided to yet again go back to her own Doctor. He finally agreed to send her to an OB/GYN. He ordered a pelvic ultrasound and that's when it was discovered that she had a 8cm cyst on her ovaries. She was then sent to an OB/GYN oncologist at our local Med School for a consult. He told us that if she didn't have surgery within 1 week she would be dead. She had the surgery and for several weeks following had to have her stomach tapped in order to drain off excess fluid. This amounted to about 35 liters. She was then started on the Taxo/Carbo chemo and! ! finally went into remission, she has been doing very well until just recently when her CA125 has again started to rise. This is a very scary time for her and her family. I can only say as have all of the other women I have read about, LISTEN to your body. No one should have to go through what my sister and her family has gone through. It should be mandatory that every woman have a pelvic ultrasound done at least every two years. Men have PSA's drawn on a routine basis so why do women only have Pap smears done, these don't detect ovarian cancer. I urge all women to demand to have this test done if they have any symptoms described by these testimonials. Thank you for listening to me.

UPDATE: On January 20, 2009, our dear friend Sean Patrick succumbed to ovarian cancer after a battle of more than 12 years. She fought the disease personally, as well as for all women. Sean travelled nationwide to seek the best care, latest treatments and most progressive ovarian cancer research. It was Sean's wish to share her knowledge and experience to improve the lives of other women afflicted with this disease.

So where do I start? Do I start the day in 1990, I went in to get a new IUD and have the other one removed? The day they put a second IUD on top of the first? Do I start from the beginning of the low grade infections and immune suppression that went on for 6 years as a result of this oversight and have now been linked to the cancer getting a foothold in my body? No that is ancient history. Something I can't change and something most women will never have to deal with. Where I will start is from the beginning of the cancer and what I have learned that might help someone else facing this disease.

In the the summer of 1995, I felt decidely different. I felt unwell, like I was slowly being poisoned. I called my internist and insisted she do a CA125. I had none of the symptoms, no bloating, no frequent urination, no menstrual irregularities or pain, but she complied. The test came back 36. Just one point above normal. She sent me for a trnsvaginal ultrasound which revealed some cysts that we followed and appeared to be resolving. We did another CA125 several months later and it was 37. I left for 6 months in Europe. I came back and my CA125 was 39. A gynecological oncologist was consulted and everybody agreed - nothing to worry about- the values were too low and the cysts appeared on film to be resolving.

I was not comfortable.

Summer of 1996, I sought the help of a specialist who agreed to do surgery now that there were a couple of new cysts. By now my values were at 59, but noone was concerned. Laparoscopic surgery. Cysts were removed along with an IUD with no copper, I did not know I had, thought it had been removed in 1990. There was some fluid in the abdomen. Path reports came back benign. But my CA125 never dropped below 42. Everyone said nothing to worry about. Maybe endometriosis even though I never had any symptoms and very little was found during the surgery.

Went back to work, to rock climbing. Summer of 1997, I still did not feel right and my CA 125 was continuing to rise in very small increments. I went back to my doctors and literally badgered them to do surgery. Said I would have my lawyers draft an agreement that would protect them in the event they took out normal tissue. They agreed and surgery was scheduled.

Laparascopic. The surgeon was surprised. What he saw did not look right. The pathology reports came back benign but he was uncomfortable with it. A second surgery, this time a laparotomy, was scheduled. A 3cm implant was found in the omentum along with several small peritoneal implants. The ovaries had borderline/LMP cells. The onc recommended Carbo/Taxol even though the s phase was only 3.

I did not feel comfortable.

My doc had the slides sent to Mass General for a second opinion which confirmed - low grade serous, stage IIIc. By now I had become a research maven. Knowledge was my key to getting the best care possible. My research told me that with an s phase of 3, that chemo was of little or no benefit. My instincts to refuse it were right on. I then found out that Dr. Bob Kurman at Johns Hopkins was one of the preemminent experts in gyn/pathology especially with these so called borderline/LMP tumors. He agreed to review my slides. The report - Micropapillary serous carcinoma - not benign but not overly aggressive. Treatment was a dilemma.

By now I had fired my first onc, found a great one in Chicago who shared the same perspective that I did about patients being a partner in the healing process. When my CA125 continued to rise, he found an immunotherapy clinical trial for me to participate in in Nashville, since he also agreed that chemo was of little or no benefit. While I won't bore you with the details, it was pretty intense. Got to the point I wondered if we had really come that far from the days of leeches and bloodletting. Felt like what we do in the name of curing is pretty barbaric, if you ask me.

I had my fifth and hopefully final surgery in October of 1999, to repair a rather large ventral hernia, a gift from my first surgeon. We had a gyn/onc in the surgery and he found everything dead or dying. With the immunotherapy plus high dose tamoxifen, I am now in remission. The first time in 4 years.

So what did I learn from this Mr. Toad's Wild Ride through the healthcare system?

• That a rising CA125, rising continually over time, no matter how low the values, is a cause for alarm!
  
  
• That if they had done a cytology report on the fluid after the first surgery in 1996, they may have caught this sooner. I never asked the question, though I thought it. So ask your questions!!!!!
  
  
• That if you find your doctor is not meeting your needs, answering your questions - get rid of him/her and find a team of people you can work with. This is about what's best for you, not them. Hospitals included!! Did you know you can ask your surgeon where he/she has operating priveleges and then interview the hospitals until you find one that meets your and your doctor's needs (emphasis on your needs)?
  
  
• Listen to your body. Listen to your instincts. If you feel uncomfortable, respect it and keep pushing even if you are told there is nothing to worry about.
  
  
• Educate yourself. It will help you get the best possible care.
  
  
• Your doctor has 100 patients. You only have one, yourself. Noone will take your case as seriously as you do. By making yourself number one, you can make yourself number one with your doctor. Don't be shy about it.
  
  
• If you suspect ovarian cancer, please go to a gynecological oncologist.

Now for the philosophic part - what I am taking away from this experience:

In retrospect, when all vision is 20/20, I thought I was being incredibly aggressive in taking care of myself. I wasn't. Through this process I have lost my innocence. Lost the ability to count on all lights eventually turning green. It is an odd limbo place to be - in the present with no guarantees that the future will be there as it was before I was diagnosed with cancer.

Before cancer or serious illness, we have this smugness about the future. That it will always be there in abundance. So what if we waste a day, stay in a job we don't like. Serious illness does not allow one to be so smug. Nor does it allow one to just get by. There is a lesson here we all can learn about appreciation - that I hope you do not have to get a serious illness to learn.

At times, I have felt terribly betrayed. Betrayed by my body and betrayed by modern medicine and the healthcare system. I had the tests. I made them repeat them every three months and then monthly. Why didn't we catch this sooner? I researched my doctors, found the best ones. Had surgery at some of this country's premier facilities. I had staph infections, a ventral hernia, anesthesia complications that all could have been avoided. I asked to have chemo sensitivity testing done. I even brought a kit to my first laparotomy. The surgeon chose not to honor my request as he did not believe in it. I did not find out until I had woken up from the anesthesia and by then it was too late.

I came to hate the word patient as it is a submissive word and sets up an unequal balance of power. As a patient we can be diminished, reduced to a procedure or set of symptoms- white female 46 years old presenting with……

Not Sean Patrick, business owner, friend, rock climber who needs her stomach muscles so a ventral hernia is not an acceptable complication. This may be a picky point but words and how we frame the dialogue is important if we are to make changes that make this system more responsive to "the patients' needs". Our needs!

And yet through it all, it has been an intensely rewarding experience (what is this woman some sort of masochist?) The incredible people I have met who have inspired me with their own struggle, the team of doctors I finally found and am currently working with, the growth I have accomplished physically and spiritually are all because of what I went through with this disease. It has been a blessing in disguise.

I have been to the depths, to the darkest place and have found through this process an awesome strength I never knew I possessed. There is opportunity in every situation. It is the ability to recognize it that distinguishes individuals. To say that I have been stretched beyond what I considered to be my limits would be an understatement.

I don't dwell on my feelings of loss and betrayal. They are what they are. I cannot change the events that happened, I only have control of my attitude and life is so much easier with a good one. I am telling you about them as it is very natural to have these feelings.

So that's my story. I hope you will share your story with us, so others can learn from your experience. Just use the submit your story button to send it. Believe it or not, you have something very valuable to teach with your story.