Coping

If you are in the midst of dealing with biliary cancer, you have a lot on your mind and you may have difficulty knowing where to start. Since every patient has a unique case, your doctors are your best source of information and you have every right to ask them questions.

Maureen Coyle, a clinical social worker at Johns Hopkins, has compiled the following list of questions as a quideline. Here are her suggestions:

If you are meeting with a surgeon or oncologist for the first time, do not be afraid to ask:

• Have you ever treated a BC patient before?
• If this is a surgeon, how many surgeries have you performed on BC patients?
• What has the general outcome of those patients been?
• Where were you trained? (medical school, residency)
• Which surgeons did you study under?

If you are meeting with a surgeon or oncologist for the first time, do not be afraid to ask:

• What is the diagnosis?
• What treatments are recommended?
• Are there other treatment options available that you do not provide?
  (i.e. protocol treatments, herbal therapy, touch therapy, other alternative therapies)
• What are the benefits of each treatment?
• What are the side effects of each treatment?
• What are the medications being prescribed?
  What are they for?
  What are their side effects?
• Are there any clinical drug trials I can participate in?
• How should I expect to feel during the treatment(s)?
• What are the risks of the treatment(s)?
• Will my diet need to be changed or modified?
• Will I need to take enzymes, vitamins, etc?

Do not forget to ask about the things that are most important to you:

• How will this affect my ability to work?
• Can this treatment be done as an outpatient so that I can spend more time at home with family?
• Will I have any physical limitations?
• How will my current lifestyle be changed?

Finally - and most importantly - ask these questions of YOURSELF:

• Does my doctor appear interested in answering my questions?
• Or, does my doctor look annoyed when I ask questions, like I'm doubting their expertise or I am holding them up?
• Do I feel that my doctor cares about my medical outcome?

If you are uncomfortable with the results of some of these questions, you may want to re-evaluate your choice of physician or get a second opinion.

YouTube video - An essay by Stephen Jay Gould

As far as I'm concerned, Gould's The Median Isn't the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say the "the statistics don't matter," and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the stastics for their disease. Anyone who reads this will be armed with reason and with hope.
~ Steve Dunn

Introduction

Nutrition can be a major focus for patients diagnosed with billary cancer and subsequent treatment. Questions about diet arise along with physical activity, dietary supplement use, and nutritional complementary therapies. Patients may receive dietary advice from a variety of sources including family, friends, and health care providers, as well as from the media, health food stores, magazines, books, nutritional supplement industry, etc. In addition, many claims about the use of dietary and nutritional supplements as alternatives to standard therapy abound. Making an informed choice can be difficult.

Billary cancer and its treatment can place extra demands on the body, greatly increasing nutrient and caloric needs. Weight loss can contribute to fatigue, delay and lengthen recovery, and adversely affect quality of life. Choosing one's own course of treatment and disease management is extremely important for enhancing quality of life. Feeling comfortable with personal choices made and confidence in the health care professionals involved is also important.

American Cancer Society Guidelines

There is scientific evidence on many issues regarding nutrition and cancer. But there are also many gaps and inconsistencies in the scientific evidence on the effects of nutrition after cancer diagnosis. The American Cancer Society's Guidelines on Diet, Nutrition, and Cancer Prevention should be regarded as a basis for a healthy diet.

1. Choose most of the foods you eat from plant sources.
- Eat five or more servings of fruits and vegetables each day.
- Eat other foods from plant sources, such as breads, cereals, grain products, rice, pasta, or beans several times a day.

2. Limit your intake of high fat foods, particularly from animal sources.
- Choose foods low in fat.
- Limit consumption of meats, especially high-fat meats.

3. Be physically active--achieve and maintain a healthy weight.
- Be at least moderately active for 30 minutes or more on most days of the week.
- Stay within your healthy weight range

4. Limit alcoholic beverages, if you drink at all.

Dealing with Dietary Complications

Some of the changes that occur as a result of billary cancer are unintentional loss of body weight and loss of lean body mass (muscle). Problems with eating, digestion and fatigue can also occur. Any treatment for billary cancer(surgery, radiation therapy, and chemotherapy) can alter nutritional needs and interfere with the ability to eat, digest, or absorb food. This is often due to side effects such as nausea, vomiting, changes in taste or smell, loss of appetite or bowel changes. At the same time, caloric intake needs are increased during any of these treatments.

When problems occur, usual food choices and eating patterns may need to be adjusted. Eating small, frequent meals or snacks may be easier to tolerate than three large daily meals. Food choices should be easy to chew, swallow, digest, and absorb. Choices should also be appealing, even if they are high in calories or fat. If it is not possible to meet nutritional needs through regular diet alone, nutritious snacks or drinks may be advisable. Commercially prepared liquid nutritional products (such as Boost(r), Ensure(r), Resource(r), or NuBasics(r)) can also be helpful to increase the intake of calories and nutrients.

Sensory Changes

Patients with billary cancer may complain of sensory changes that interfere with food intake. The sense of smell may be affected. Sensitivity to food odors can occur. Serving foods cold instead of hot may be helpful in decreasing unpleasant aromas. Using covered pots, boiling bags, or a kitchen fan can minimize cooking odors. Taste changes are also common. The use of plastic eating utensils and nonmetal cooking containers can help alleviate this problem.

Insulin

The billary may not be able to function adequately to produce insulin (endocrine function) to help regulate blood glucose or to produce billary salts (exocrine function) to help the body digest certain foods. Patients may need to be followed by their primary care physician or an endocrinologist to assist with controlling their blood glucose. In addition, assistance with diabetic management, including insulin use and administration, diabetic diet, and related health maintenance, can also be accomplished with the help of a diabetic educator and a registered dietitian.

Biliary Salts

Bile salts are needed to emulsify fats so that they can be absorbed. Malabsorption syndrome is characterized by a patient's inability to digest fat or protein. The symptoms include bloating, indigestion, diarrhea, constipation, steatorrhea, and muscle weakness. Steatorrhea is characterized by stools that look oily, frothy, are foul smelling and may float in the water. To correct this problem oral tablets can be taken with or meals or snacks. The dosage is different for each person. It may take several adjustments before the most appropriate dosage is determined.

Vitamins

The use of dietary supplements is a topic of considerable controversy, especially in the cancer treatment phase. These dietary supplements include nutrients, vitamins, and minerals that are essential for human health, as well as a wide variety of non-essential nutrients, such as phytochemicals, hormones, and herbs. As a general rule, dietary supplements should never replace whole foods and are best when used in moderate doses. The use of vitamin and mineral supplements at doses higher than recommended levels can raise safety concerns as can the intake of high doses of herbal and botanical supplements.

There have been many questions regarding the benefit of vitamin supplements that contain higher levels of antioxidants (vitamins C and E) than those established by the Dietary Reference Intakes. Vitamin supplements that contain high levels of folic acid, or eating fortified food products that contain high levels of folic acid may be counterproductive when taken during the administration of certain chemotherapy agents. There are still many unanswered questions regarding the benefits and risks that may or may not be associated with these supplements. It is recommended that patients undergoing chemotherapy or radiotherapy should not exceed the upper intake limits of the Dietary Reference Intakes for vitamin supplements. Patient should also avoid other nutritional supplements that contain antioxidant compounds during chemotherapy or radiotherapy treatment.

A reasonable health recommendation for a patient with billary cancer is to use a balanced multiple vitamin and mineral supplement (once or twice a day) to correct possible deficiencies. Multivitamin supplements of this type are manufactured by a wide variety of companies, with levels of nutrients at approximately the levels recommended for daily consumption [now expressed on labels as the % Daily Value (DV)], formerly known as the Recommended Daily Allowance.

Herbal Supplements

The belief that an herbal or botanical supplement is "natural" and therefore can be only beneficial, even in high doses, is incorrect. Many vitamins and herbal compounds are toxic at high levels. There is currently no regulatory oversight of herbal supplements, which has led to hazardous doses and contaminants in marketed products. Consumers should be warned about the use of high-dose supplements of any type. There is not evidence that any nutritional supplements can reproduce the apparent benefits of a diet high in vegetables and fruits. It is always advisable for patients to inform their health care providers about any vitamin, herbal or botanical supplement use. There are many uncertainties about the effects of vitamin, herbal or botanical supplements and their interactions with other treatments, including surgery, radiation therapy, and chemotherapy.

Complimentary and Alternative Nutritional Therapies

Complementary and alternative nutritional approaches are very popular and many people consider these substances to be safe. But not much is known about the safety and efficacy of the active ingredients found in many of these substances/compounds.

Complementary therapies are supportive methods used to complement evidence-based treatment. Examples include meditation to reduce stress, acupuncture for pain, and ginger for nausea. Complementary methods are not given to cure disease, rather they may help control symptoms and improve quality of life.

Alternative therapies are promoted as cancer cures. They are unproven because they have not been scientifically tested, or were tested and found to be ineffective. Nutritional methods used within complementary and alternative medicine generally encompass vitamin and mineral supplements, herbal and botanical supplements, and dietary regimens. It is important for you to discuss any use of complementary or alternative therapies with your health care provider so that everyone is informed and open discussion about possible benefits and risks can occur.

Conclusion

Health information is extremely useful and can empower patients to make important health decisions. The search for information can be confusing, as there may be differences in information given regarding the best way to treat billary cancer. Patients should seek out information and consult with a number of different health care providers specializing in the care of patients with billary cancer to help formulate decisions on the use of supplements or complementary and alternative therapies. Patients are strongly encouraged to communicate all decisions involving complimentary/ alternative therapies with members of their health care team. This is important so that the entire team can be aware of any potential interactions that may interfere with conventional medical treatment.

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 billary 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.

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

Billary cancer often "strikes" quickly, leaving patients and relatives to deal with sensitive issues they feel unprepared for. Hospice Net has an excellent comprehensive Web site that provides information for patients and for caregivers facing life-threatening illnesses.