Living With GEP-NET: What Is Carcinoid Syndrome?

What is carcinoid syndrome?

About 10 percent of people with GEP-NETs develop carcinoid syndrome. It’s a group of symptoms that occur due to the cancer cells releasing extra hormones, including serotonin. 

These symptoms may include:

• Diarrhea

• Flushing

• Stomach pain

• Racing heart

• Low appetite

• Swelling

Carcinoid syndrome is more common in people who have GEP-NETs in their small intestines. The risk may also be elevated when the cancer metastasizes (spreads) to other organs, such as the liver.

What happens if you are experiencing carcinoid syndrome? 

If you’re experiencing symptoms of carcinoid syndrome, talk to your care team.

“Based on the symptoms that you describe, they should be able to make the diagnosis of carcinoid syndrome purely based on your conversation,” says Perez.

Your care team may also decide to measure the hormone levels in your blood  in order to make or confirm a diagnosis. 

Carcinoid syndrome is treated with medicine called somatostatin analogs. This medication attaches to the tumor cell and prevents it from releasing the extra hormones, which may help manage the symptoms. 

You may also receive other treatments, including chemotherapy, targeted therapy, or radioligand therapy, if you’re eligible. The right option for you depends on many factors, including if or where the cancer has spread to other locations.

That’s why it’s important to let your care team know if you’re having symptoms so that they know which treatments to give you.

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Written by:

Marisa Taylor Karas

Marisa Taylor Karas is a freelance journalist based in Brooklyn who has covered health, gender, and technology for 15 years. She previously worked at The Wall Street Journal, The Guardian, and Al Jazeera America, among other publications, and also served as managing editor of the Mellon Foundation in New York City.

Reviewed by:

Alexandra Schwarz, MD

Alexandra Schwarz, MD, is a board-eligible sleep medicine physician and a board-certified family medicine physician. She is a member of both the AASM and the ABFM.

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