Overview
A neuroendocrine tumor of the small intestine (also called a small intestine NET, midgut carcinoid, or small bowel neuroendocrine tumor) is a slow-growing cancer that starts in special hormone-producing cells lining the small intestine. These cells are part of the neuroendocrine system, which controls many body functions by releasing hormones. When these cells grow out of control, they form a tumor that can stay in the intestine or spread to nearby lymph nodes and the liver. Many people with this tumor have no symptoms for years because it grows slowly. When symptoms do appear, they often include belly pain, diarrhea, and flushing of the skin. Some tumors release large amounts of hormones like serotonin into the bloodstream, causing a group of symptoms called carcinoid syndrome — including severe flushing, watery diarrhea, and wheezing. Over time, the excess hormones can also damage the heart valves, a condition called carcinoid heart disease. Treatment depends on how far the tumor has spread. Surgery is the main treatment and can sometimes cure the disease if caught early. For tumors that have spread, doctors use medications called somatostatin analogs (such as octreotide and lanreotide) to control hormone symptoms and slow tumor growth. Other options include targeted therapies, peptide receptor radionuclide therapy (PRRT), and chemotherapy. With modern treatment, many people live for many years after diagnosis.
Also known as:
Key symptoms:
Belly pain or crampingDiarrhea, often waterySkin flushing (sudden redness or warmth of the face and neck)Wheezing or shortness of breathNausea and vomitingUnexplained weight lossFatigue and low energyFeeling of fullness or bloatingHeart palpitationsSwelling in the legs (from heart valve problems)Blood in the stool (less common)
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsHospices Civils de Lyon
European Institute of Oncology — NA
Hospital Universitari de Bellvitge — NA
Hospices Civils de Lyon
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Neuroendocrine tumor of the small intestine.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Neuroendocrine tumor of the small intestine.
Community
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Start the conversation →Latest news about Neuroendocrine tumor of the small intestine
Disease timeline:
New recruiting trial: Microbiota and Carcinogenesis of Small-intestine Neuroendocrine Tumors
A new clinical trial is recruiting patients for Neuroendocrine tumor of the small intestine
New recruiting trial: Use of 68Ga-DOTATOC PET/CT-enterography for Detection of the Primary Lesion in Neuroendocrine Tumors of the Small Bowel
A new clinical trial is recruiting patients for Neuroendocrine tumor of the small intestine
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.Has my tumor spread, and if so, where has it gone?,What is the grade of my tumor, and what does that mean for how fast it might grow?,Should I be tested for a hereditary condition like MEN1, especially if I have family members with similar tumors?,Am I a candidate for surgery, and could surgery cure my disease?,What are the benefits and side effects of somatostatin analog injections for me?,Am I eligible for PRRT (Lutathera) treatment, and where can I receive it?,How often do I need imaging and blood tests to monitor my tumor?
Common questions about Neuroendocrine tumor of the small intestine
What is Neuroendocrine tumor of the small intestine?
A neuroendocrine tumor of the small intestine (also called a small intestine NET, midgut carcinoid, or small bowel neuroendocrine tumor) is a slow-growing cancer that starts in special hormone-producing cells lining the small intestine. These cells are part of the neuroendocrine system, which controls many body functions by releasing hormones. When these cells grow out of control, they form a tumor that can stay in the intestine or spread to nearby lymph nodes and the liver. Many people with this tumor have no symptoms for years because it grows slowly. When symptoms do appear, they often inc
How is Neuroendocrine tumor of the small intestine inherited?
Neuroendocrine tumor of the small intestine follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Neuroendocrine tumor of the small intestine typically begin?
Typical onset of Neuroendocrine tumor of the small intestine is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Neuroendocrine tumor of the small intestine?
Yes — 2 recruiting clinical trials are currently listed for Neuroendocrine tumor of the small intestine on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Neuroendocrine tumor of the small intestine?
16 specialists and care centers treating Neuroendocrine tumor of the small intestine are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.