Overview
Gastroenteric neuroendocrine neoplasms (also called GI-NETs, gut NETs, or gastrointestinal carcinoid tumors) are a group of tumors that grow from specialized hormone-producing cells lining the digestive tract. These cells are part of the neuroendocrine system, which means they share features of both nerve cells and hormone-producing cells. The tumors can develop anywhere along the digestive tract, including the stomach, small intestine, appendix, colon, and rectum. They are considered rare cancers, though their diagnosis has become more common as imaging technology has improved. Because these tumors often grow slowly and may release hormones into the bloodstream, they can cause a wide range of symptoms. Some people have no symptoms for years, while others experience flushing of the skin, diarrhea, abdominal pain, or weight loss. When tumors release hormones like serotonin in large amounts, a condition called carcinoid syndrome can develop, causing episodes of flushing, wheezing, and severe diarrhea. Treatment depends on the location, size, and spread of the tumor. Options include surgery to remove the tumor, medications to control hormone-related symptoms (such as somatostatin analogs like octreotide or lanreotide), targeted therapies, peptide receptor radionuclide therapy (PRRT), and in some cases chemotherapy. Many patients live for many years with this diagnosis, especially when the tumor is caught early or grows slowly.
Key symptoms:
Skin flushing (sudden redness or warmth of the face and neck)Chronic or severe diarrheaAbdominal pain or crampingUnexplained weight lossNausea and vomitingWheezing or shortness of breathFatigue and low energySwelling of the legs or anklesA feeling of fullness or bloating after eatingBlood in the stoolHeart palpitations or fast heartbeatLow blood sugar episodes (in some tumor types)
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
3 eventsYusuf Menda — EARLY_PHASE1
Société Algérienne de Formation et de Recherche en Oncologie
M.D. Anderson Cancer Center — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Gastroenteric neuroendocrine neoplasm.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for Gastroenteric neuroendocrine neoplasm.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Gastroenteric neuroendocrine neoplasm.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the grade and stage of my tumor, and what does that mean for my prognosis?,Is surgery an option for me, and could it cure my disease?,Should I be tested for a hereditary syndrome like MEN1, and should my family members be tested?,Am I a candidate for PRRT (Lutathera) or other targeted treatments?,How often will I need scans and blood tests to monitor my disease?,Are there clinical trials I should consider?,What dietary or lifestyle changes can help manage my symptoms?
Common questions about Gastroenteric neuroendocrine neoplasm
What is Gastroenteric neuroendocrine neoplasm?
Gastroenteric neuroendocrine neoplasms (also called GI-NETs, gut NETs, or gastrointestinal carcinoid tumors) are a group of tumors that grow from specialized hormone-producing cells lining the digestive tract. These cells are part of the neuroendocrine system, which means they share features of both nerve cells and hormone-producing cells. The tumors can develop anywhere along the digestive tract, including the stomach, small intestine, appendix, colon, and rectum. They are considered rare cancers, though their diagnosis has become more common as imaging technology has improved. Because these
How is Gastroenteric neuroendocrine neoplasm inherited?
Gastroenteric neuroendocrine neoplasm follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Gastroenteric neuroendocrine neoplasm typically begin?
Typical onset of Gastroenteric neuroendocrine neoplasm is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Gastroenteric neuroendocrine neoplasm?
Yes — 2 recruiting clinical trials are currently listed for Gastroenteric neuroendocrine neoplasm on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.