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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 health care team, but to get you started, here are four things you can do to stay on top of your disease.

Partner with Your Health Care 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 health care 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 health care team:

  • 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.

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Keep a Regular Appointment Schedule

Making a commitment to keeping your medical appointments can help you establish a partnership with your health care team. Try to plan your day-to-day calendar far in advance so you won't have to cancel your medical appointment.

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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.

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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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