Taking Control of Carcinoid Syndrome
Regardless of your current treatment plan, there are practical things you can do to take control of carcinoid syndrome. You should discuss your plan with your health care team, but to get you started, here are 5 things you can do to stay on top of your disease.
- Partner with Your Health Care Team
- Keep Your Medical Appointments
- Adjust Your Diet
- Keep a Diary of Symptoms and Test Results
- Maintain a Positive Attitude
Partner with Your Health Care Team
One of the most effective ways of taking control of carcinoid syndrome is to build a strong and open working relationship with all of the members of your health care team — doctors, nurses, receptionists — even fellow patients! The benefits of doing so are many. You improve your chances of getting and staying on an effective treatment plan, and staying on top of any side effects. Most important, you'll increase your chances of staying on a regular appointment schedule — the key to optimal care.
Some steps you can take to build your relationship with your health care team include:
- Always provide accurate information about all symptoms you experience, including severity and changes in symptoms
- Inform your health care team about all medications you are currently taking, allergies, and dietary habits
- Ask all questions that arise concerning your disease, the management of your health, and anything else
- Keep an accurate diary of symptoms and test results
Remember, the best way to get help and information is through your health care team. Keeping an open relationship with them can benefit your disease management, your health, and your confidence in staying on top of your disease.
Keep a Regular Appointment Schedule
Establishing a partnership with your health care team can be greatly aided by making a commitment to arrange and keep your medical appointments. This can help you maintain a regular treatment schedule, as well as help keep your health care team completely informed of your health. Plan your day-to-day calendar far in advance so you'll never have to cancel a medical appointment.
Adjusting Your Diet
Your health care team will discuss different lifestyle changes you can make that may also help control the symptoms of carcinoid syndrome. One such change is your diet. Avoiding alcohol and spicy foods may help prevent flushing. In addition, there are several dietary substitutions you can make to help prevent diarrhea. They include:
| CHOOSE | INSTEAD OF |
|---|---|
| Rice, wheat, or oatmeal cereal | High fiber cereals containing bran or whole grain |
| Chicken or turkey (skinless white meat), beef or fish | Dairy foods (cheese, yogurt, cottage cheese) |
| White bread | Whole grain breads |
| Rice, pasta, and potatoes without the skin | High-fiber vegetables such as broccoli, cauliflower, cabbage, and beans |
| Ripe bananas, pureed vegetables, and canned or cooked fruits such as applesauce or pears | Raw vegetables, fresh or dried fruits, pickles, relishes, nuts, and popcorn |
| Jam or jelly | High fat spreads (butter, cream cheese) |
| Baked or broiled foods | Greasy, fatty, or fried foods |
| Bland foods | Spicy foods (curry, hot pepper) |
| Hard candy or pound cake | Caffeinated foods (chocolate candy, brownies) |
| Animal crackers, pretzels | Butter cookies, doughnuts |
| Water | Milk |
| Decaffeinated beverages | Beverages that contain caffeine (coffee, tea, hot chocolate) |
| Clear broth (chicken or beef) | Creamy soups |
| Noncarbonated drinks | Juices with pulp or sodas such as clear fruit juices with a lot of fizz |
| Pedialyte®3, Gatorade®*, and other electrolyte-replacement drinks | High-sugar drinks or carbohydrate-loading sports drinks |
| Lactose-free beverages such as soy milk or lactose-free dairy products | Milk |
| Nonalcoholic beverages | Beverages with alcohol |
Keep a Diary of Symptoms and Test Results
As mentioned, you can help your health care team, and boost your sense of being in control, by keeping a diary of symptoms and test results.
Maintain a Positive Attitude
Often said, but too often ignored, this advice is very important for anyone with a serious medical condition. Keeping a positive attitude is one of the best nonmedical treatments you can offer yourself. Maintain a positive outlook in dealing with your disease as well as in occupational and social situations. Remind yourself that you are more than your disease.
For many people with carcinoid syndrome, part of maintaining a positive attitude is being comfortable talking about their symptoms. At first, this is much easier in a support group of others who understand what you've been going through. But eventually, you may find that you are no longer embarrassed to discuss your symptoms with others.
