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Caring for Someone With GEP-NET: 4 Symptoms of Carcinoid Syndrome to Look Out For

Carcinoid syndrome is a possible complication of gastroenteropancreatic neuroendocrine tumors.

Marisa Taylor KarasAlexandra Schwarz, MD
Written by Marisa Taylor Karas | Reviewed by Alexandra Schwarz, MD
Updated on June 4, 2024
Featuring Kimberly Perez, MDReviewed by Alexandra Schwarz, MD | May 30, 2024

If you have a loved one with a gastroenteropancreatic neuroendocrine tumor, or GEP-NET, a possible complication you should know about is carcinoid syndrome. 

“It’s really important to know the different symptoms that can be associated with carcinoid syndrome, because some can go unnoticed by the patient themselves,” says Kimberly Perez, MD, Medical Oncologist with Dana-Farber Cancer Institute in Boston. 

What is carcinoid syndrome?

Carcinoid syndrome is a group of symptoms that are caused by the excess release of hormones from the cancer cells. 

Neuroendocrine cells release hormones (such as serotonin) in response to certain stimuli. When these cells become cancerous, they may release hormones in a chaotic or abnormal way. In some cases, this may lead to carcinoid syndrome.

What are symptoms of carcinoid syndrome?

Some symptoms of carcinoid syndrome include:

  • Diarrhea

  • Racing heart

  • Shortness of breath

  • Abdominal pain

What should you do if your loved one is having symptoms of carcinoid syndrome?

If your loved one is experiencing any of these symptoms, it’s important that they realize that it’s happening. 

“The next step is to reach out to the care team and discuss what you’re seeing as the care provider or loved one, so that they can help create a care plan to address the symptoms,” says Perez.

Your loved one’s care team may suggest changing or adding a treatment option to get the symptoms under control. 

References

American Cancer Society. (n.d.). Caregiver resource guide.

American Cancer Society. (2018). Signs and symptoms of gastrointestinal carcinoid tumors.

GoodRx Health has strict sourcing policies and relies on primary sources such as medical organizations, governmental agencies, academic institutions, and peer-reviewed scientific journals. Learn more about how we ensure our content is accurate, thorough, and unbiased by reading our editorial guidelines.

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Why trust our experts?

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.
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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