Taking an Active Role in Carcinoid Syndrome
Regardless of your current treatment plan, there are practical things you can do to take an active role in carcinoid syndrome. Be sure to discuss your plan with your healthcare team, but to get you started, here are five things you can do to stay on top of your disease.
Partner with Your Healthcare Team
One of the most effective ways of taking an active role in carcinoid syndrome is to build a strong and open working relationship with all of the members of your healthcare team—doctors, nurses, receptionists, even fellow patients. Most importantly, you may increase your chances of staying on a regular appointment schedule—the key to optimal care.
Here are some steps you can take to build your relationship with your healthcare team:
- Always provide accurate information about all symptoms you experience, including severity and changes in symptoms
- Inform your healthcare 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 healthcare 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
Making a commitment to keeping your medical appointments can help you establish a partnership with your healthcare team. Try to plan your day-to-day calendar far in advance so you won't have to cancel your medical appointment.
Adjusting Your Diet
Your healthcare team will discuss 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, or 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 or pretzels | Butter cookies and 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 healthcare team, and boost your sense of being in control, by keeping a diary of symptoms and test results.
Maintain a Positive Attitude
It's not always easy, but 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 work 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.
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