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Questions about Carcinoid Syndrome

On this page, you'll find links to answers for common questions about carcinoid syndrome. Please keep in mind that these answers are not a substitute for consultation with your health care team. Please ask your doctor, pharmacist, or nurse any questions you may have.

What is carcinoid syndrome?

Carcinoid syndrome is the set of symptoms that occur in patients who have carcinoid tumors.

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What causes carcinoid syndrome?

Carcinoid syndrome occurs when carcinoid tumors overproduce substances such as serotonin.

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What are the symptoms of carcinoid syndrome?

The most common symptoms of carcinoid syndrome are flushing of the face, chest, or upper back, and diarrhea. Other symptoms include heart valvular lesions, cramping, swelling of the hands or feet, wheezing, red spots on the skin (telangiectasia), blueness of the skin (cyanosis), rash (pellagra), and arthritis.

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How is carcinoid syndrome diagnosed?

There are various tests your doctor can use to find out if you have carcinoid syndrome, including a 5-HIAA urine test, a Chromogranin A (CgA) blood test, and an imaging test called somatostatin receptor scintigraphy.

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What are the goals of treatment?

The main goals of treatment are to remove the carcinoid tumor or reduce its size, and to help manage its impact on you.

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How can I take an active role in helping to manage carcinoid syndrome?

The first step is to talk to your doctor about your symptoms. Your doctor is most concerned with preserving your overall health and lifestyle. He or she will recommend a treatment plan.

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What should I ask my doctor about my condition?

Asking questions is a great way to take an active role in managing your carcinoid syndrome, and build an open communication with your health care providers. It's a good idea to write down your questions before doctor visits, so you can be sure you've asked them all. For a list of questions you may wish to ask, click here.

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Where can I go for more information?

There are many resources available to you to find out more about carcinoid syndrome. For a listing of websites where you can find more information about the disease, as well as patient support groups, click here.

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