Esophageal cancer is one of the rarest cancers in Western countries. However, the incidence has doubled in the last decade, affecting men most of all. According to the American Cancer Society, 15,530 people died of esophageal cancer in 2021.
Here's a personal story about Jim Corn, written by his wife Carolyn Corn.
Jim's Journey with Esophageal Cancer
My name is Carolyn Corn. I lost my beloved husband of over 41 years to adenocarcinoma of the esophagus at the age of 63. His one year and 7 month journey through this illness is presented with the hope of providing insightful information to you, as a patient or caregiver. Even though I am a Registered Nurse with a Master's degree in Public Health, nothing had prepared me for this journey. I will document facts by chronological date. Personal comments follow the chronological events listed.
During Jim's fight against this dreadful disease, there have been 8 people, from our small circle, who have visited their physicians and are now being treated appropriately. Two people have discovered Barrett's Disease, two have had esophageal strictures dilated, one had a Nissen procedure done, three people are now on medication for GERD, gastroesophageal reflux disease.
My primary reason for writing this article is to encourage people to treat indigestion and reflux disease very seriously. In our affluent American culture, heartburn is accepted as a normal thing that is easily treated with OTC (over the counter) products such as Tum's, Rolaid's, Zantac and Pepcid. Some advertisements for drugs also treat the problem lightly with the dancing pink stomach and give the message to treat your self. These products are very effective at treating the symptoms but underlying medical problems caused by the symptoms are often overlooked.
Symptoms
- Persistent heartburn that requires antacids or other over-the-counter medications to alleviate.
- Problems in swallowing
- Waking up at night with heartburn or difficulty breathing/aspiration, due to stomach acids regurgitating into the esophagus
- When lying down: back-flow of stomach contents into the esophagus
- Coughing due to the previous symptoms
- Feeling of discomfort at the base of your sternum due to the previous symptoms
Also ask yourself or your loved ones:
Does caffeine, alcohol, chocolate or spicy foods cause indigestion?
The bottom line is that if you or someone you know is having consistent symptoms like those listed above, they need to see a specialist to evaluate whether the symptoms of heartburn and reflux indicate a serious problem that could lead to cancer. Don't put it off! See a Doctor immediately!
Things I've Learned
- Listen to your "gut" feelings about your body or those of your Family/Friends.
- Seek early treatment. Treating the symptoms may disguise the disease underneath.
- Avoid caffeine and alcohol. The surgeon said these are the worst substances you can put in your GI tract.
- Avoid food and drink for 2-3 hours before bedtime.
- Elevate the head of your bed, 6 inches or more, or use a wedge (available at medical supply stores).
- PPI's (Proton Pump inhibitors) will decrease acid and heal esophageal erosions.
- A Nissen fundoplication surgical procedure may prevent the necessity for daily PPI's.
- Have regular endoscopic exams if you have Barrett's disease or erosions.
- Trust no one blindly. Physicians are fallible people. Only stay with M.D.'s who can hear your concerns.
- Become informed. Ask questions. Be active in your care. You know more about yourself than doctors do. At a doctor's visit, always have someone with you to hear comments and discuss relevant points.
- Be wise in knowing when to let nature take its course. There are treatments worse than death.
| Timeline | Jim's Journey |
|---|---|
| Nov 2000 | Jim and I were planning our retirement years. Jim was downsized from a company, where he was Manager in Business Communications. This was anticipated. We had remodeled our home and were looking forward to travel, volunteering and pursuit of many personal interests. |
| Dec 2000 | Jim began to have difficulty in swallowing, usually with the first bite of food. For several years, he had been using extra strength calcium carbonate antacids (Tums/Rolaids) for indigestion and heartburn. He had also been taking Pepcid and Tagamet occasionally. If you have these on-going symptoms, do not put off medical attention. This may only mask a serious condition. For about a year and one-half, I had the feeling that Jim was not well. Never discount a mate's instinct. I thought the problem was malfunctioning thyroid. He had been going between hypo and hyperthyroidism. Zantac was ordered twice daily by our family physician. |
| Feb 11, 2001 | Jim decided to see our internist because the swallowing problem seemed to be getting worse. An abdominal ultrasound and a Barium swallow were ordered. |
| Feb 12, 2001 | The ultrasound of the liver, kidneys and gallbladder were negative. But the barium swallow showed "A large hiatal hernia and a stricture of the lower one-third of the esophagus". The film showed normal size esophagus until 2/3rd's down, then there was progressive narrowing down to the esophageal juncture opening into the stomach. A hiatal hernia is when there is a gap in the diaphragm which allows the stomach to protrude into the upper part of the chest cavity. This is associated with GERD. |
| Feb 19, 2001 | An endoscopy (using a lighted tube with a camera used to examine the esophagus from the mouth to the stomach and upper small intestine) was completed by the gastro-enterologist. (An MD who specializes in disorders of the gastrointestinal tract) A dilatation of the stricture was done to allow Jim to eat more easily. As Jim was waking up, the MD informed the family that "the area around the ulcer, located at the gastroesophageal juncture, (the area where the esophagus and stomach meet) had irregular borders and looked very suspicious for cancer". They took biopsies of those areas. Jim also had areas of Barrett's disease. The MD immediately ordered a CAT scan of the chest and abdomen. Prevacid 30 mg every day was also ordered. Barrett's disease is caused by acid repeatedly splashing back from the stomach into the lower esophagus. Over time, the esophagus develops intestinal type cells in order to protect itself from the acid. Current medical thinking is that Barrett's disease is a precursor to esophageal cancer |
| Feb 21, 2001 | The gastroenterologist called and said that the pathology report confirmed adenocarcinoma of the esophagus. The primary location was thought to be in the GEJ (gastroesophageal junction). There was some question if the cancer was stomach or esophageal in origin. |
| Feb 22, 2001 | An EUS (endoscopic ultrasound) was completed at Duke. This procedure gives more precise information regarding the size and depth of the tumors with 80% accuracy evaluating the primary tumor and 65% accuracy evaluating lymph nodes. Jim's tumor was staged by the physician as "Stage T-3, N-1, Mx This cancer is 'locally advanced'". It is very important to get the proper staging. This is the way M.D.'s translate findings into common views. The cancer had perforated through the muscle layer, into the fatty layer, two perigastric nodes (lymph nodes close to the esophagus/stomach) were positive and another chest node looked suspicious. The tumor was "1 cm. in the esophagus and 1 cm. in the stomach and esophageal juncture". No organ (lungs, liver etc.) metastasis was seen. |
| Feb 28, 2001 | The Duke consulting surgeon, at our insistence, saw Jim early. Any time you have cancer, time elapsed before treatment is important due to the possibility of spread. He said "Surgery is the only cure". He gave 3 options: Surgery alone Surgery first, then chemotherapy Radiation to kill the tumor and sterilize the surgical field; Concurrent chemotherapy to kill the circulating cancer cells in the system. 1 month rest, then surgery, either Ivor-Lewis or pull through esophagectomy (THE). The surgeon's choice was number 3. |
| Mar 2, 2001 | A second opinion with a surgeon at UNC was "to take the entire stomach, all esophagus and part of the small intestine". The judgment was that the cancer is primarily "gastric" in origin. Representatives from 2 major medical centers offered 2 different options. Make sure that you get multiple opinions. Jim's decision was to go with the Duke group for a chance at a better quality of life. The surgeon arranged for a radiologist and oncologist to be on the team. In my e-mails to the medical team, I emphasized my concern over the controversy of esophageal vs. gastric origin of the primary tumor. Never be afraid to question-no one can care more or have as much knowledge of the individual as you or a family member. Our son-in-law built a frame for our king-sized bed to elevate the head of the bed 7 inches. Jim also used a 7 inch wedge pillow on top of the mattress. I continue to use the bed with the frame since I have GERD. |
| Mar 6, 2001 | Met with the oncologist at Duke and developed the following plan. 3-19-01 thru 4-20-01: Continuous 5 FU chemotherapy for 34 days with Infusions of Taxol 365 mg and Carboplatin 650 mg on days 1 and 28 (5 hours each day) 3-19- 01 thru 4-20-01: Radiation, total 4500cGy, 5days per week 4-20-01 thru 5-17-01: Rest to build strength for surgery 5-18-01: Esophagastrectomy, pylorplasty, esophagogastrodenoscopy |
| Mar 12, 2001 | Consultation with Duke radiologist, said "PET scan showed more stomach involvement (pink areas) than we thought. The submucosa and thickening of the walls was enough that the beam was slightly adjusted to include more of the stomach". ( A PET scan is glucose sensitive for tumors and will usually show a bright pink. A PET scan is often done to rule out hidden tumors, in order to prevent unnecessary surgery.) |
| Mar 13, 2001 | The Duke surgeon dilated the esophagus, with size 60 French catheter, due to complete closure. This allowed Jim to continue to eat. The surgeon did a thorough investigation of the gastroesophageal area, based on the radiologist's comments and opinion of UNC. A Hickman catheter (for chemotherapy) and J-tube in the small intestine (for additional feedings) were placed. The surgeon was emphatic that the primary tumor was esophageal in origin. Side effects during pre-surgical chemotherapy radiation and chemotherapy included: Thrush, nausea, rash of chest, groin and thigh, low blood counts of platelets, hemoglobin and hematocrit. A very low count of neutrophils (mature white blood cells) caused a condition called neutropenic fever. The oncologist ordered Levaquin, an antibiotic, to fight off infection since the body's natural disease fighters, white blood cells, were low. The worst side effect was atrial tachycardia and skipped beats (pulse thready, pulse between 158 to 178 over a 3 hour period, weakness, ashen color). Our local pharmacist, told us after the event that Levaquin, the antibiotic, and Compazine, which Jim used for nausea, should never be given together due to possible atrial fibrillation. |
| May 10, 2001 | 9 days before esophagectomy Jim spent an hour talking with a man who had the same surgery a year before. He found this to be extremely helpful. He was able to hear first hand of the surgical experience and be able to see how he could assist himself in recovery. Ask your PA or surgeon to put you in contact with another patient. Only they can fully understand. |
| May 18, 2001 | Esophagastrectomy, pylorplasty, esophagogastrodenoscopy (transhiatial esophagectomy) surgery was completed. The entire esophagus was removed along with 1/15th of the stomach. The remaining stomach was pulled up and attached to the cervical (collarbone) area, in order to replace the esophagus. Atrial fibrillation was picked up on the monitor immediately and Jim was placed on Diltazim. (In retrospect, I wonder why MD did not order medication for the much worse pre-surgical episode, even though he was informed.) Jim continued on Cardizem until 8-28-01. An epidural line was placed in the thoracic area. This gives a continual dose of pain medication by IV. Jim experienced no pain but he did have hallucinations 4 hours after the narcotic was discontinued. Ask for pain medication to be gradually tapered. It was tapered once but still not enough. |
| May 24, 2001 | A fiberoptic endoscopic swallow test was done by the speech therapist. Jim tolerated solid foods well but was placed on "nectar consistency" liquids, for a few weeks, to prevent lung aspiration. |
| May 27, 2001 | The resident reported the lymph node pathology report "No viable CA (cancer) cells were found except in one parallel lymph node". More chemotherapy was recommended. This was a set back since chemotherapy is the least effective weapon in esophageal cancer and has the most side effects. Once the lymph nodes are affected, this means the cancer cells are circulating in the blood system. |
| May 28, 2001 | Jim was discharged home after 11 days at Duke Hospital. |
| Jul 3, 2001 | Started on first post-operative chemotherapy: Third infusion of Taxol and Carboplatin (the plan was to go for a total of 6 infusions, two before and four infusions after surgery) |
| Jul 23, 2001 | Fourth infusion of Taxol 333 mg and Carboplatin 550 mg with his weight down to 163 lbs, ideal body weight. His weight before surgery was 201lbs. |
| Aug 4-7, 2001 | Emergency admission to Rex Hospital for neutropenic fever as a side effect of chemotherapy. Massive amounts of antibiotics were given. |
| Aug 17, 2001 | Cardizem was stopped, weight 156, had dark stools, positive for blood. 2 units of blood were given. Stools were oily and frothy. Pancreatic enzyme ordered. Apparently Jim's pancreas was damaged significantly during radiation and physicians at Duke did not order this enzyme. |
| Aug 28, 2001 | Fifth infusion of Taxol and Carboplatin, Procrit 40,000 uts started per week (to stimulate bone marrow to produce more red blood cells.) |
| Sep 25, 2001 | Sixth and final infusion of Taxol and Carboplatin. |
| Oct 22, 2001 | Outpatient stretching of anastamosis (narrowing at surgical attachment site) of esophagus was done. The barium swallow showed a 13 mm barium tablet did not pass through the new esophagus. |
| Jan 16, 2002 | Routine CAT scan done. "Two enlarged lymph nodes near the aorta are noted". I questioned if the Ivor-Lewis surgery would have produced a better result (going through the back, in addition to the front incision). The oncologist said that lymph nodes close to the aorta were hard to reach and would not be advised due to problem with cardiac arrhythmia. |
| Mar 19, 2002 | CAT scan showed "significant enlargement in left periaortic lymph node at left hilar level". This was recurrent esophageal cancer! The lymph nodes have very poor blood circulation therefore it is difficult to get the chemotherapy to the cancer cells. Jim's major organs, which received good blood perfusion, were not affected by the cancer but it grew voraciously in the lymph system. I truly believe that this is an area of research that may hold the key to treating esophageal cancer. |
| Mar 27, 2002 | Transferred to an oncologist at the local Cancer Center at Rex Hospital. Extensive Internet searches for possible drug regimes which would offer a good result but none were found. |
| Apr 1, 2002 | Jim started on Xeloda by mouth. There was a 90% reduction in one colon cancer patient, according to M.D. Treatment was now directed toward "gastric cancer since the cancer had not responded to Taxol". |
| May 30, 2002 | Xeloda discontinued. Severe lethargy and increasing nausea and vomiting for about 9 days, fluid level very low. It was obvious that the drug was not working. |
| Jun 3, 2002 | CAT scan showed increased size of periaortic nodes, fluid in the abdominal cavity and fluid compressing the lung cavity. (This indicates presence of tumors non visible to CAT scan). The omentum (lining between intestines) showed thickening. (This indicates cancer growth in the many lymph nodes in the abdomen). The oncologist was "looking for a Phase II trial or a novel way to get to the areas with very poor blood circulation". |
| Jun 13, 2002 | Started CPT-11 and Gemzar as a last effort. |
| Jun 20, 2002 | Chemotherapy canceled due to low red and white blood counts. |
| Aug 1, 2002 | Fifth and last dose of CPT-11 and Gemzar given. |
| Aug 15, 2002 | Oncologist reviewed the CAT scan with the entire family. Terminal status confirmed. Abdominal and pelvic area was sheeted with cancer growth (carcinomitosis.) Jim's lungs had fluid caused by compression of tumor on lung bases (atelactasis.) Hospice was recommended and started on 8-23-02. |
| Sep 2, 2002 | Jim and I had our last walk in the flower garden. He told me he wanted to die due to the nausea and feeling so bad; general weakness and weight loss was apparent. His weight was dropping due to lack of desire for food and fluid. (Cachexia is a frequent condition of terminal patients). I told him that I understood and we (family) would be OK, that he would always be loved and missed. We talked of those loved ones who had died before us. |
| Sep 3, 2002 | Food and fluid intake was down drastically. He had a very bad night, vomiting 10-12 times in a few hours. Used morphine and Ativan bucally. The hospice nurse visited and noted a small bowel obstruction. She told me that these tumors can double in 48 hours. All food and fluid was stopped. (This was to prevent nausea and vomiting.) Medication was also stopped, except for morphine and Ativan under the tongue and dexamethosone gel for inflammation. |
| Sep 5, 2002 | The oncologist made a house call. (Most unusual for these days but extremely beneficial to the family.) Life expectancy was 3-10 days. Ativan and Morphine was to be given every 3-4 hours. Morphine could be given up to 1 cc per hour if needed. |
| Sep 7, 2002 | A very special spiritual moment for us. I was stroking Jim's forehead when he mumbled something. I asked him to repeat. He said, "Carolyn, Is your mother still waiting for me"? (Jim was very close to my mother who died 9-15-01) I replied, "yes, she is in heaven with the others and it is OK for you to go when you need too. We will miss you but we will be OK". He pointed past me and said, "Carolyn, Your mother is waiting for me right over there." |
| Sep 8, 2002 | Jim recognized two friends- minimal conversation. |
| Sep 9, 2002 | The hospice nurse advised me to increase the Ativan and Morphine to every hour due to difficult breathing. That afternoon, I told Jim that I would love him always and forever. He said "Me too" sending the same message back. 4:00 PM morphine dose increased. All communication was gone from that time on. It's important to have conversations and quality time before large amounts of morphine are started. It's important to the patient and the caregiver. It's their opportunity to share with you what they are going through and your chance to reassure them that they are loved and you understand that they have to leave you. |
| Sep 10, 2002 | 4:30 AM- Jim's chest was very full, Cheyne-Stokes respiration (irregular breathing with 10-20 seconds between breaths) I feel sure that Jim felt no discomfort but it was unpleasant to watch as he was drowning in his own fluids. Jim died at 9:10 PM on 9-10-02 with me, our two children and their spouses by his side. He was my soulmate and will always be with us. |
In Memory of...
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