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Frequently Asked Questions

Learn More About Carcinoid Syndrome

Carcinoid syndrome is a rare condition. It is recognized by a group of symptoms that can occur regularly and persist over time. The frequency and number of symptoms vary from person to person. Talk to your doctor about whether you should be tested for carcinoid syndrome.

No, having a colonoscopy with normal findings does not rule out a carcinoid tumor. This is because most carcinoid tumors are located in other parts of the GI tract, and may even arise in the lungs.

Flushing associated with menopause is usually accompanied by sweating, while flushing associated with carcinoid syndrome is not usually accompanied by sweating. Other characteristics of the flushing associated with carcinoid syndrome can vary with the location of the tumor:

  • Sometimes occurs as an intense, long-lasting flush of the face and neck that is purplish in hue
  • Sometimes occurs as a faint pink or red flush that involves the face and upper part of the torso and lasts only a few minutes. This kind of flush may be provoked by exercise, alcohol (especially red wine), and certain foods, such as blue cheese and chocolate
  • Flushing is usually intermittent but can occur many times per day

With carcinoid syndrome, diarrhea can occur at any time, day or night, even if you have not eaten anything. Diarrhea associated with IBS does not usually happen at night or if you have been fasting.

The best way for your doctor to tell if wheezing is related to carcinoid syndrome is to test for the presence of serotonin or other substances that can cause bronchospasm.

Carcinoid tumors can produce a range of symptoms because they secrete a number of different hormones. Serotonin, the most frequently produced hormone, can itself cause diarrhea, cardiac lesions, flushing, and wheezing. Adding to the complexity, these tumors can produce other hormones and other chemical signals that can vary based on the location of the tumor.

Carcinoid syndrome is rare and general practitioners may not have the specialized knowledge regarding its diagnosis and treatment. A gastroenterologist (GI specialist) or endocrinologist may be better able to diagnose or rule out carcinoid syndrome. Whichever specialist you choose, it’s important that you share with him or her the full range of your symptoms, whether or not they seem to relate to the specialty. Bringing a printout of your 30-second quiz can help you talk to your specialist about the symptoms you’re having—and may lead to getting tested for carcinoid syndrome. The decision to test for carcinoid syndrome is between you and your doctor.

More information about carcinoid syndrome can be found at this website: www.carcinoid.com

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