Carcinoid Syndrome - Signs and Symptoms

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What were the signs and symptoms associated with your carcinoid tumor or syndrome?

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What is a carcinoid tumor?

A carcinoid tumor is a tumor that develops from enterochromaffin cells. Enterochromaffin cells are hormone-producing cells that normally are found in the small intestine, appendix, colon, rectum, bronchi, pancreas, ovaries, testes, bile ducts, liver, as well as other organs. Enterochromaffin cells produce many types of hormones for example, histamine, serotonin, dopamine, tachykinins, and other substances that have profound effects on the circulatory system (heart and blood vessels), the gastrointestinal tract, and the lungs. For example, serotonin can cause diarrhea, histamine wheezing, and tachykinins flushing due to dilation of blood vessels.

Since carcinoid tumors develop from enterochromaffin cells, they frequently retain the capability of producing the same hormones, often in large quantities. When these hormones circulate in the blood, they can cause symptoms of carcinoid syndrome, which is discussed later.

The important characteristic of carcinoid tumors that sets them apart from other gastrointestinal tract tumors is their potential to cause the carcinoid syndrome. Most other gastrointestinal tract tumors (such as colon cancers or small bowel lymphomas) cause symptoms primarily due to their local effects on the intestines such as abdominal pain, intestinal bleeding, and intestinal obstruction. Although carcinoid tumors may also cause these local symptoms, they may also produce and release hormones that cause the carcinoid syndrome. Often, symptoms of the carcinoid syndrome can be more devastating than the local symptoms.

Return to Carcinoid Syndrome and Carcinoid Tumor

See what others are saying

Comment from: Marie, 75 or over Female (Patient) Published: September 17

I have been on Sandostatin since January 2010 after having a cancerous tumor removed from my rectum, found during a colonoscopy. It was then determined that I had carcinoid syndrome. I suffer from body pain, wheezing, inability to sleep lying down, extreme stomach pain, swelling of the abdomen (I can actually change sizes in a 24 hour period) and feet, along with peripheral neuropathy and restless leg syndrome. I am on oxygen and must use a cane or walker and take other medications for many of these things that are caused by the carcinoid syndrome and side effects of the Sandostatin. Then these medications cause other side effects. I will be returning to the oncologist this next week after having been off the Sandostatin for a 12 week period. I am hoping that they can find something else to treat me with as the Sandostatin has so many side effects. One of the most serious is joint deterioration (I have had to have my left shoulder replaced), along with heart and breathing problems which I am also living with now. I am at the point of possibly stopping treatment of any kind and just be monitored. It is hard to believe that all of these and other health issues started after being diagnosed with carcinoid syndrome and starting treatment for it.

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Comment from: Ree, 55-64 Female (Patient) Published: November 26

I was diagnosed in 2009 with stage 4 carcinoid (primary tumor in the duodenum) which metastasized to the liver, spleen, lymph nodes, and other places. They said I could have had it for 25 years. I kept having the flushing and diarrhea, and told every doctor that I had a chronic stomach ache. I also have had type 1 diabetes for 37 years. My diabetes doctor found the carcinoid. I take 2 shots of Sandostatin every 28 days. I still have terrible diarrhea and gas.

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