Understanding Carcinoid Syndrome
This page gives basic information you need to begin understanding carcinoid syndrome, including:
- What Is Carcinoid Syndrome?
- The Symptoms of Carcinoid Syndrome
- Taking Control of Carcinoid Syndrome
- The Goals of Treatment
What Is Carcinoid Syndrome?
Carcinoid syndrome is the set of symptoms that occur in patients who have carcinoid tumors. The syndrome occurs when carcinoid tumors overproduce substances such as serotonin that normally circulate throughout your body. This hypersecretion of serotonin and other hormones is what causes the symptoms of carcinoid syndrome.
Other (non-carcinoid) tumors can also cause symptoms similar to those of carcinoid syndrome. One such tumor is called a VIPoma. "VIP" stands for Vasoactive Intestinal Peptide. VIPomas are extremely rare and can cause severe, watery diarrhea that requires immediate care.
If you have carcinoid syndrome, or diarrhea caused by a VIPoma, it is important to visit your health care provider regularly. Your health care provider will explain why it is necessary to treat your symptoms promptly and aggressively.
The Symptoms of Carcinoid Syndrome
There are many symptoms associated with carcinoid syndrome. They may occur alone or in combination with each other. The two most common symptoms are:
- Flushing - Occurs in over 90% of people with carcinoid syndrome. Can be temporary or constant and usually appears suddenly on the face or neck. The flush looks deep red or purple. When flushing occurs, you may also feel warm, unpleasant, and have a rapid heartbeat. The flush can last from a few minutes to hours.
- Diarrhea - Occurs in over 75% of people with carcinoid syndrome. Can occur with flushing or by itself. Stools are watery and the diarrhea can be mild or severe. Episodes can occur several times a day and can interfere with daily life. In addition, diarrhea can drain your body of water, causing dehydration and electrolyte loss. These electrolytes, such as sodium and potassium, carry electrical charges or messages throughout your body. Without enough water and electrolytes, proper digestion cannot occur, and your body cannot get the nutrients it needs. This can worsen the weight loss, weakness, and fatigue that may have already been caused by the loss of fluids and electrolytes.
Other symptoms of carcinoid syndrome may include:
- Heart valvular lesions (53%)
- Cramping (51%)
- Telangiectasia (red spots on skin) (25%)
- Peripheral edema (swelling of hands/feet) (19%)
- Wheezing (19%)
- Cyanosis (blueness of skin) (18%)
- Arthritis (7%)
- Pellagra (rash) (7%)
It is important to always keep your health care team informed if you experience any of these symptoms, so you can get effective treatment for them.
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Flushing on the back. Photograph courtesy of L. Anthony, MD. |
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Facial flushing. Photograph courtesy of A. Benson, MD. |
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Flushing on the legs (left) and the same patient without flushing (right). |
Taking Control of Carcinoid Syndrome
Taking control of carcinoid syndrome starts with you. The best way to take control is by building a strong and open relationship with your doctors and nurses. This will help you:
- Assure yourself the best treatment possible
- Stay on top of treatment side effects
- Feel more comfortable talking about your symptoms
- Feel more confident about your health
Some helpful ways to establish and build a relationship with your health care team include:
- Always provide accurate information about any symptoms you experience, including severity and changes in symptoms
- Tell your health care team about all medications you are currently taking, allergies, and dietary habits
- Ask any and all questions that arise concerning carcinoid syndrome, the management of your health, and anything else
- Keep an accurate diary of symptoms and test results
Some foods you may want to avoid if you are experiencing gastrointestinal symptoms of carcinoid syndrome include:
- High fiber cereals such as those containing bran
- High fiber vegetables such as broccoli, cauliflower, cabbage, and beans
- Dairy foods such as cheese, yogurt, or cottage cheese
- Greasy, fatty, or fried foods
- Beverages that contain alcohol or caffeine
The Goals of Treatment
One of the primary goals of treating carcinoid syndrome is to make sure you gain control of your symptoms. If you have carcinoid tumors, it is important that you speak to your doctor about starting treatment at the first sign of symptoms. Your doctor will discuss the best treatment for you and help you to set up an easy-to-follow treatment plan.
