Quality of Life - Pancreatic Cancer | Johns Hopkins Pathology

Quality of Life

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Quality of Life

Quality of life is a measure of how comfortable a person is physically, emotionally, socially, and/or spiritually.

Managing Quality of Life

While we tend to focus on whether or not surgery is possible or which chemotherapy to give, we absolutely should not forget the small, day-to-day things that can impact a patient's quality of life. These include:

Diet & Nutrition- Patients with pancreatic cancer often feel bloated, particularly after they eat. Several things can help. Multiple small meals, over the counter proton pump inhibitors, and in some instances, pancreatic replacement enzymes (given by prescription) can all help.
Pain- Patients with pancreatic cancer often suffer from pain. It is very important to remember that pain can be managed with medications and as outlined in the treatment section, there are a number of approaches to controlling pain. We recommend that you obtain a consult from a pain specialist if your pain isn't managed.
Physical Activity- Maintaining an active life style is important for one's physical and mental health. The National Cancer Institute has outlined many of the benefits of physical activity. As they note, aerobic training and/or resistance exercise during and after cancer treatment can reduce anxiety, depressive symptoms, and fatigue and improve quality of life.
Depression- Patients with pancreatic cancer often suffer from depression. You don't have to be depressed. Seek help from a psychiatrist as psychiatrists can prescribe anti-depressants and other medications which may help. Many patients also find that a holistic approach to their care helps alleviate anxiety.
Holistic Care- Complementary and alternative medicine approaches may alleviate symptoms in patients who have been diagnosed with pancreatic cancer.

Greater details on day-today care and managing various quality of life issues are provided below.

Diet & Nutrition ▼

It is very difficult for pancreatic cancer patients to maintain weight for several reasons. Many patients lose their appetite and the normal taste of food as a result of byproducts released from the cancer. Even the food that is eaten may not always be digested well because the pancreas is not working properly. If the pancreatic duct is obstructed or after surgery, the pancreas may not release sufficient amounts of pancreatic enzymes.Therefore some patients will benefit from taking pancreatic enzymes. Unfortunately, the problems with weight do not end there. The majority of patients with pancreatic cancer will still lose weight even if they are eating and digesting their food sufficiently. Many pancreas cancers (and other cancers) release compounds into the blood that breakdown muscle and fat (causing cachexia). So that over time patients will find they are not only slimmer but their muscles are smaller and they become progressively more fatigued. We have created a video (button below) that provides information on nutrition and diet for patients with pancreatic cancer. To learn more, you can also download the Diet & Nutrition pdf.

Proper Nutrition for a Pancreatic Cancer Diagnosis Video

Physical Activity ▼

Author: JoAnn Coleman, RN, MS, ACNP, AOCN

Physical activity levels tend to decrease after cancer diagnosis and treatment. Even though one may feel fatigued, regular light physical activity should be encouraged.

Regular activity may:

Improve appetite
Stimulate digestion
Prevent constipation
Maintain energy level
Muscle mass
Provide relaxation or stress reduction
Lower levels of anxiety

Increased levels of physical activity can improve overall quality of life. In choosing a level of activity, it is important to take into consideration the patient's physical functioning and previous levels of activity.

Physical activity should be individualized, initiated slowly, and progress gradually. A nutrition and physical activity plan should be customized for each patient to help rebuild muscle strength and correct problems with anemia or any impaired organ functioning. Adequate food intake and physical activity are crucial to patients recovering from any treatment for pancreatic cancer.

If a patient has limited mobility or is confined to bed rest, physical therapy in bed should be initiated to maintain enough strength and range of motion of joints. Physical activity can help counteract the fatigue spiral and feelings of low energy that some patients experience under those circumstances. Various medications and physical activity can help to increase appetite, and if needed, nutritional support can be provided in other ways for those who cannot eat enough. When patients are in the terminal stages of their disease, it is always necessary to listen to the wishes and decision of the patient regarding the intake of food or fluids.

Advice from a health care provider qualified in nutritional assessment can be helpful in assessing problems with eating and physical activity and in creating an individualized plan to meet specific challenges.

Emotional, Social & Spiritual Concerns ▼

Emotional Issues

Let your care team know if you're having any emotional issues since effective treatments are often available. If you or someone you love is having these symptoms, talk to the care team to see what they think. In some instances, this may be the time to consider hospice care, which can make the person and their family more comfortable.

Social Concerns

Sometimes people struggle with changes to their social situation or roles. They may have been very independent or taking care of others and now find that they need help themselves. People with cancer are often more concerned about their loved ones than they are about themselves. Financial issues can also be a concern. Let your care team know if these things are bothering you as they may have resources to help you with them.

Spiritual Concerns

Serious illness like pancreatic cancer can also cause people to ask questions about why this has happened to them or to try to find the meaning in such a situation. Many who are religious find their faith is an important way to cope with illness. They may find comfort in spiritual practices or talking with a spiritual leader. Even if someone is not religious, talking to someone about these important concerns can help. A medical chaplain or counselor on the cancer team can help address these important questions. Your cancer team should be able to connect you with someone to talk with if you don't know anyone on your own.

Holistic Care ▼

Acupuncture

Acupuncture originated in China more than 2,500 years ago and spread first throughout Asia, and later to Europe and the Americas. While acupuncture has been offered in Asian communities throughout the United States for many generations, it is only since 1970, following the opening of China to the West, that this system of health care has been available to the general population in this country. Acupuncture is a principle modality of Eastern medicine which focuses on healing within a unified system of body, mind and spirit. As a result, acupuncture is generally used in conjunction with herbal, massage, diet and exercise therapies to maximize health, prevent illness and treat disease.

According to Western medicine, the effects of Acupuncture are probably the result of stimulating the nervous system to release chemicals which may in turn release other hormones producing the desired effects. This theory is supported by the basic research work which has shown acupunctures effect on ACTH, insulin, thyroid hormones, growth stimulating hormone, beta-endorphin, white blood cell production and plasma cholesterol levels. Acupuncture may work on an electromagnetic bio-information system. In traditional Chinese Medicine training, acupuncture is believed to modulate the flow of energy (Qi) in its channels, or meridians, to restore balance.

Although electrical stimulation, lasers, heat/moxibustion or pressure may be used to manipulate Qi meridians, treatment with acupuncture needles is the most commonly used technique. In an acupuncture session, acupuncturists may insert and remove the needles quickly or leave them in for longer periods of time, often with the application of heat or electrical impulses. Typically, 3-15 long thin solid needles are placed in various locations according to the meridians, not necessarily at the anatomic site of symptoms.

Acupuncture is a gentle therapy. People often find it so relaxing that they fall asleep during therapy with the needles still in! Acupuncture needles are extremely thin (the width of a hair) stainless steel and very flexible. Insertion of these needles is usually painless. The sensation during acupuncture needle insertion varies between individuals and points chosen by the acupuncturist.

In general, adverse reactions to acupuncture are minimal, although case reports of complications do exist. Bleeding rarely occurs. Infection is minimized by most practitioners through the use of sterile disposable needles, one time use, which is recommended. Allergic reaction to the stainless steel needles is also rare. Pain varies by patient, but treatment is usually painless or slightly painful. Some patients report feeling temporary exacerbation of their symptoms. For patients receiving auricular (near the ear) treatments, the possibility of chondritis (inflammation of the ear cartilage) exists, although it is rare.

Questions: Do the Needles Hurt?

Acupuncture is a gentle therapy. People often find it so relaxing that they fall asleep during therapy with the needles still in! Unlike their western counterparts (Hypodermic hollow needles, or shots) acupuncture needles are extremely thin (the width of a hair) stainless steel and very flexible. Insertion of these needles is often painless. The sensation during acupuncture needle insertion varies between individuals and points chosen by the acupuncturist. Once the needles are in place there is no pain at all. Acupuncture needles are all sterile, one time use.

How do I prepare for acupuncture?

The following guidelines are meant to enhance your response to treatment:

Wear loose fitting clothing
Eat a few hours before treatment (Do not come on an empty stomach, if possible)
Refrain from drinking alcohol on the day of treatment
Continue to take all prescription drugs
Refrain from taking recreational drugs. Recreational drugs interfere with the effectiveness of treatment
Keep notes about your response to treatment. Your acupuncturist may base the next treatment on your response to treatment

Indications for Acupuncture

Pain
Nausea and vomiting
Neuropathy
Dry mouth
Fatigue
Anxiety
Depression
Insomnia
Smoking reduction

Research

The World Health Organization recognizes acupuncture as being helpful for over 140 different problems
National Institutes of Health indicates that there is clear evidence in that acupuncture is effective for chemotherapy- related nausea and vomiting
Recent research has demonstrated acupunctures effectiveness in treating fatigue related to cancer treatment, and pain

Learn about Acupuncture Services at Johns Hopkins.

Final Stages of Illness ▼

Symptoms like a complete loss of appetite, extreme fatigue and the abdominal swelling called "ascites" can be signs that pancreatic cancer is moving into the final stage. Many patients also lose energy and end up sleeping more. This is also natural but can be addressed if the person is finding the fatigue overwhelming. Finally, the ascites can be reduced through a procedure called "paracentesis" where a needle is inserted into the abdomen and fluid slowly drawn out. However, the fluid will come back, so this procedure can only be done every week or two.

What to Expect About End of Life Care

Things To Take Care Of

Although people dealing with pancreatic cancer usually hope for the best (we sincerely believe that there is always hope!), it is always a good idea to also plan for the worst. The following are things that should be considered for anyone with a serious illness. Completing them provides peace of mind for both the person with cancer and those who love and care for them.

Naming someone to make healthcare decisions for you ▼

It is important to think of who could make decisions for you if you should become too ill to make them for yourself. This decision maker can be anyone you trust and should be someone who knows you, your values, and what your wishes are for medical treatments. Talking about such things can be difficult, but people usually say the peace of mind afterwards is worth it. There are documents to confirm these decisions, called "Advance Directives." Each state has its own format for Advance Directives. Not all require a lawyer, but most need to be completed in front of witnesses unrelated to the person completing the form. There is a very helpful format called "The 5-Wishes" which is recognized in 42 states and useful in all 50. Also, remember to check your local state for forms specific to your state of residence.

A Living Will ▼

This is a document that talks about what kind of care you would want should your cancer move into its last or terminal stage. Families often say that knowing such wishes for care in advance is a gift to them. It helps them make appropriate decisions should they ever have to, which can ease the burden of such difficult situations. Your cancer team can help you access the Living Will format recognized in your state, but there are also very helpful websites that can walk you through this process, such as Prepare For Your Care website.

Treatment Goals ▼

While most people with pancreatic cancer will want to be treated for their cancer sometimes treatments can have side effects that can be worse than the cancer. If you are having significant complications with your cancer treatment, you may want to consider talking with someone. It is important to talk to your cancer team about your treatment goals. For example if a cure is not possible, some patients consider alternate treatments that are more focused on comfort. Doctors understand that people sometimes need to change their treatment goals and should help you make those decisions with clear information about prognosis, side effects, and what alternate options are.

Next: FAQs

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Also known as a pancreatoduodenectomy, the Whipple procedure is the surgery typically performed to remove cancers of the head of the pancreas (the part of the pancreas on the right side of your body). It typically involves the surgical removal of the head of the pancreas, a portion of the duodenum and a portion of the bile ducts.

This is an experimental type of treatment. It is a medication made of killed or weakened cells, organisms or manufactured materials, which is used to boost the body's immune system. Ideally, this will allow the body to fight and kill the cancer cells more effectively. Vaccines include whole killed cancer cells or specific proteins from the cancer.

Unable to be surgically removed. This usually means that the cancer has spread beyond the areas that can be removed surgically.

The part of the pancreas that bends backwards, hooking around two very important blood vessels, the superior mesenteric artery and vein. The word "uncinate" comes from the word uncus which means "hook."

A painless procedure in which high frequency sound waves are used to generate pictures of the inside of the body. An ultrasound devise can be placed at the end of a scope, and the scope inserted into the duodenum, providing very detailed pictures of the pancreas. This is called "endoscopic ultrasound."

This term simply refers to a "mass" or neoplasm. For example, a collection of pus is a tumor. This is a general term that can refer to either benign or malignant growths.

A clot within the blood vessels. It may occlude (block) the vessel or may be attached to the wall of the vessel without blocking the blood flow.

An inflammation of the veins accompanied by thrombus formation. It is sometimes referred to as Trousseau's sign.

The long thin part of gland in the left part of abdomen, near the spleen.

A slender hollow tube inserted into the body to relieve a blockage. For example, pancreas cancers often grow into the bile duct as the bile duct passes through the pancreas. This can block the flow of bile and cause the patient to become jaundiced. In these cases the flow of bile can be reestablished by placing a stent into the bile duct, through the area of blockage.

Excessive amounts of fat in the stool. Sometimes this can appear as an oil slick on top of the toilet water after the patient has had a bowel movement. It can be a sign that the pancreas isn't functioning well.

A classification system that is used to describe the extent of disease. Clinicians use it to predict the likely survival of a patient.

A flat, scale-like cell. Although most pancreatic cancers look like ducts under the microscope, a small fraction look like squamous cells.

A maroon colored, rounded organ in the upper left part of the abdomen, near the tail of the pancreas. This organ is part of your immune system and filters the lymph and blood in your body. It is often removed during the distal pancreatectomy surgical procedure.

A long (20 foot) tube that stretches from the stomach to the large intestine. It helps absorb nutrients from food as the food is transported to the large intestine. There are three sections: the duodenum, the jejunum and the ileum. Due to its proximity to the pancreas, the duodenum is the section of the small intestine most often affected by pancreatic cancer.

An infection of the blood. This can be life-threatening and is often treated with antibiotics.

A malignant tumor that looks like connective tissues (bone, cartilage, muscle)under the microscope. Sarcomas are extremely rare in the pancreas.

Able to be removed surgically. Usually this means that the cancer is confined to areas typically removed surgically.

The use of high-energy waves similar to x-rays to treat a cancer. Radiation therapy is usually used to treat a local area of disease and often is given in combination with chemotherapy.

A thick ring of muscle (a sphincter) between the stomach and duodenum. This sphincter helps control the release of the stomach contents into the small intestine.

A forecast for the probable outcome of a disease based on the experience of large numbers of other patients with similar stage disease. Importantly, making a prognosis is not an exact science. Some patients with poor prognosis beat the odds and live longer than anyone would have predicted. Steve Dunn's Cancer Guide has an excellent article on statistics and prognoses and stories of other cancer patients.

A cancer in the organ where it started in. A primary cancer of the pancreas is one that started in the pancreas as opposed to a cancer that started somewhere else and only later spread to the pancreas.

The biochemical study of plants; concerned with the identification, biosynthesis, metabolism of chemical constituents of plants; especially in regards to natural products.

Around the ampulla of Vater in the duodenum. The peri-ampullary region is comprised of 4 structures; the ampulla, the duodenum, the bile duct and the head of the pancreas. It is sometimes difficult to tell which structure a tumor originated in. In such cases the diagnosis will be a peri-ampullary tumor.

A medical doctor specially trained to study disease processes. Pathologists make the microscopic diagnosis that is used to establish the diagnosis of cancer.

A term used to describe certain tumors which grow in finger-like projections. Pathologists use this term to describe some precancerous lesions in the pancreas (intraductal papillary mucinous neoplasm).

Any treatment that reduces the severity of a disease or its symptoms. Palliative care is often a part of the treatment plan for patients with advanced pancreatic cancer.

An oblong organ located between the stomach and the spine. The pancreas secretes enzymes needed for the digestion of food and it produces hormones such as insulin and glucagon which help control blood sugar.

A surgically created opening in an organ that can also be referred to as an anastamosis. Sometimes when surgeons remove a segment of bowel they create an ostomy to allow for the bowel contents to exit the body.

A medical doctor who specializes in the treatment of tumors. Oncologists often treat patients with pancreatic cancer with chemotherapy.

An abnormal new growth of tissue that grows more rapidly than normal cells and will continue to grow if not treated. These growths will compete with normal cells for nutrients. This is a general term that can refer to benign or malignant growths. It is a synonym for the word tumor.

Chemotherapy and radiation therapy that is given to patients before surgery. Some centers feel that the use of neoadjuvant therapy improves local and regional control of disease and that it may make more patients surgical candidates.

The thin section of the pancreas between the head and the body of the gland.

An alteration in the DNA of a cell. Think of it as a typographically error in the DNA code.

A cancer that has spread from one organ to another. Pancreas cancer most frequently metastasizes to the liver. In general, cancers that have metastasized are generally not treated surgically, but instead are treated with chemotherapy and/or radiation therapy.

A cancer that has the potential of invading nearby tissues, spreading to other organs (metastasizing) and possibly leading to the patient's death.

A painless method for visualizing internal organs. A tube-like machine with a powerful magnet generates images of the inside of the body. It does not involve the use of Xrays.

Normal, round, raisin to grape-sized collections of lymphocytes (white blood cells) found throughout the body. Lymph nodes are connected to each other by lymphatic vessels. They normally help fight infection, but also are one of the first sites to which cancers spread. In general, the spread of cancer to lymph nodes portends a worse prognosis for the patient. There are exceptions to this.

A primary pancreatic cancer that has spread to regional lymph nodes and/or resectable (removable) tissues. Removable tissues include some lymph nodes and parts of the duodenum and stomach that are routinely removed in some surgical treatments for pancreatic cancer.

The largest organ in the body, located in the right upper part of the abdomen. It performs many life-maintaining functions including the production of bile. The liver detoxifies the blood of drugs, alcohol and other harmful chemicals. It processes nutrients absorbed by the intestine and stores essential nutrients, vitamins and minerals. Bilirubin is a chemical produced when old or damaged blood cells breakdown. The liver chemically process the bilirubin so that it can dissolve in water and be excreted through the urine. When this process is disrupted, jaundice can develop.

A technique that surgeons can use to visualize and even biopsy (take tissue samples of) organs inside of the abdomen without making large incisions. Very small incisions are made in the belly and small tubes (called trocars) are then inserted. Gas is pumped in through one of the tubes to create enough space to work in. The surgeon inserts a small camera through one of the tubes and examines the lining and contents of the abdominal cavity by looking at the projected image on the television screen. With specially designed laparascopic instruments, biopsies and fluid samples can be taken for examination. Some surgeons feel that this technique can help "stage" a patient less invasively than with open surgery.

Yellowing of the skin or yellowing of the whites of the eyes caused by the accumulation of bile pigments (usually due to an obstruction of the bile ducts).

A hormone produced by the endocrine cells of the islets of Langerhans cells of the pancreas. Insulin acts to lower blood sugar levels.

A term used to indicate that cancerous cells are present in the duct but have not yet invaded deeper tissues.

The widest part of the pancreas. It is found in the right part of abdomen, nestled in the curve of the duodenum, which forms an impression in the side of the pancreas.

A hormone produced by the endocrine (islets of Langerhans) cells of the pancreas. When blood sugar levels are low, glucagon acts to raise blood sugar levels.

Gemzar is the trade name for the chemotherapy drug gemcitabine. It is frequently used to treat pancreatic cancer. It has been shown, in controlled clinical trials, to improve quality of life.

A green pear-shaped organ located on the right side of the abdomen just under the liver. The gallbladder is essentially a reservoir for holding bile.

A chemotherapeutic drug commonly used to treat pancreatic cancer.

The exocrine cells (acinar cells) of the pancreas produce and transport chemicals that will exit the body through the digestive system.

The chemicals that the exocrine cells produce are called enzymes. They are secreted in the duodenum where they assist in the digestion of food.

A test used to visualize and examine the pancreas and bile ducts. A tube is inserted through a patient's nose (or throat), down through the esophagus and stomach then into the small intestine (duodenum). There, a small probe is inserted into the ampulla of Vater. A dye is injected through the probe and into the pancreatic and bile ducts. X-rays are then taken to visualize the pancreatic and bile ducts. these ducts can be seen as white structures (this is because the injected dye is opaque). Because pancreas cancers often block the pancreatic and/or bile ducts, this technique can be useful in establishing a diagnosis of pancreas cancer.

A chemical that causes a reaction in other substances, in this case as a part of the digestive process.

A medical doctor who specializes in the treatment of hormonal abnormalities.

These are specialized cells that produce hormones released into the bloodstream. For example, the islets of Langerhans are endocrine cells in the pancreas that produce the hormone insulin. This hormone helps control blood sugar(glucose) levels.

Some rare tumors of the pancreas, the endocrine (Islet Cell) tumors, can produce these same hormones. It is very important that these rare tumors be properly diagnosed because it will determine the treatment and prognosis.

Surgical removal of a structure or part of a structure. For example, pancreatectomy is the surgical removal of the pancreas (or a portion of it).

The first portion of the small intestine. It is about 1 foot long. It is the part of the intestinal track that comes after the stomach.

A small anatomic structure. This is essentially a tube that carries various bodily fluids. The pancreatic duct runs the full length of the pancreas and drains into the duodenum.

The chemical in every cell that carries genetic information.

A dome shaped muscle that separates the lungs and heart from the abdomen. This muscle assists in breathing.

The disease in which the body is unable to appropriately control blood sugar (glucose) levels. This may be caused by failure of the pancreas to produce adequate amounts of insulin.

A fluid filled sac. Some tumors of the pancreas, including the serous cystadenomas and intraductal papillary mucinous neoplasms, form cysts. Cysts have a distinct appearance in CT scans. They are important to recognize because the treatment of cystic tumors can differ from that for solid tumors.

A dye, taken by mouth or injected, that is sometimes used during x-ray examinations to highlight areas that otherwise might not be seen.

A way to image internal organs. A series of x-ray pictures taken by a machine that encircles the body like a giant tube. Computers are then used to generate cross-sectional images of the inside of the body.

The treatment of a cancer by chemicals. For pancreatic cancer these include: Gemzar (Gemcitabine), 5-flurouracil, leukovorin, taxol, and others.

A small, flexible tube inserted into the body to inject or suck out fluids.

A cancer-causing chemical. Cigarette smoke contains a number of carcinogens.

A malignant tumor. It has the potential of invading into the adjacent tissues, spreading to other organs and may eventually lead to the patient's death.

A dramatic weight loss and general wasting that occurs during chronic disease.

A blood marker for pancreas cancer. It is not a good screening test for diagnosing possible pancreas cancers in individuals without symptoms. Instead, it can be useful in following the progress of patients known to have a cancer by measuring how their cancer is responding to treatment.

The middle part of the pancreas between the neck and the tail. The superior mesenteric blood vessels run behind this part of the gland.

The removal and microscopic examination of a small tissue sample.

A duct that carries bile from the liver to the intestine. This term may refer to the hepatic, cystic or common bile duct.

A green fluid produced by the liver that helps digest fats. It is transported from the liver to the duodenum by the bile duct. When the flow of bile is blocked, patients may become jaundiced (yellow skinned).

Tumors which are non-cancerous. These generally grow slowly and do not invade adjacent organs or spread (metastasize) beyond the pancreas.

The collection of excess amounts of fluid in the abdominal cavity (belly). It often is a sign that the cancer has spread to either the liver or to the portal vein that goes to the liver, or that the cancer involves the internal lining of the abdomen. If normal liver function is affected, a complex set of biochemical checks and balances is disrupted and abnormal amounts of fluid are retained.

The large artery that carries oxygen-rich blood from the heart. From the heart it arches backwards and descends into the abdomen where it gives off many branches to supply the organs. The superior mesenteric artery is a major branch of the aorta that can be involved by pancreatic cancer.

A radiographic technique used to visualize blood vessels. A contrast medium (a dye) is usually injected into the vessels to make them appear white on the x-rays.

A condition marked by a diminished apetite and aversion to food. Often results in physical signs of wasting.

A condition characterized by a deficiency in red blood cells. This can lead to fatigue among other symptoms.

A surgical joining of two hollow structures. It is similar to attaching two ends of a garden hose. For example, a gastrojejunostomy is a surgical procedure that connects the stomach and the jejunum (small intestine.)

This widening of the pancreatic duct as it reaches the duodenum is an landmark for physicians. It is where the bile duct and pancreatic duct join before draining into the duodenum (small intestine). Tumors in the head of the pancreas may squeeze this duct partially or completely closed. This can lead to problems with digestion and jaundice.

Chemotherapy given to patients after their cancers have been surgically removed. It is a secondary treatment given to supplement surgical treatment. (see Neoadjuvant chemotherapy which is chemotherapy given before surgery)

A benign (non-cancerous) tumor made up of cells that form glands (collections of cells surrounding an empty space).

The form of cancer that most people are talking about when they refer to "cancer of the pancreas." These tumors account for 75% of all pancreas cancers.

Microscopically, adenocarcinomas form glands. These tumors can grow large enough to invade nerves which can cause back pain. They also frequently spread (metastasize) to the liver or lymph nodes. If this happens the tumor may be considered unresectable.

A pus-filled cavity. Usually caused by an infection.

The portion of the body between the diaphragm and the pelvis.