Overview
This entry in the Orphanet database is labeled 'OBSOLETE: Neuroendocrine tumor of small intestine,' meaning it has been retired as a standalone rare disease classification. In practice, neuroendocrine tumors of the small intestine — sometimes called small intestine NETs, carcinoid tumors, or midgut NETs — are a group of slow-growing cancers that start in the hormone-producing cells lining the small bowel. These tumors can release hormones and other chemicals directly into the bloodstream, causing a wide range of symptoms throughout the body. The small intestine NETs most commonly arise in the ileum (the last part of the small intestine). Because they grow slowly, many people live with them for years before a diagnosis is made. When the tumor spreads to the liver, it can trigger a condition called carcinoid syndrome, which causes flushing, diarrhea, and wheezing. Treatment options include surgery, medications that block hormone release (such as somatostatin analogs like octreotide and lanreotide), targeted therapies, and in some cases peptide receptor radionuclide therapy (PRRT). Because this Orphanet code is now obsolete, patients should look for updated classifications under 'neuroendocrine neoplasm' or 'gastrointestinal neuroendocrine tumor' in current medical resources.
Also known as:
Key symptoms:
Abdominal pain or crampingDiarrhea, often watery and frequentSkin flushing (sudden redness or warmth of the face and neck)Wheezing or shortness of breathUnexplained weight lossNausea and vomitingFatigue and low energyA feeling of fullness or bloatingHeart palpitationsSwelling in the legs (from heart involvement in advanced disease)Bowel obstruction causing severe abdominal pain
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Neuroendocrine tumor of small intestine.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Neuroendocrine tumor of small intestine.
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 OBSOLETE: Neuroendocrine tumor of small intestine.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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?,What is the grade of my tumor, and what does that mean for how fast it might grow?,Should I have genetic testing to see if this runs in my family?,Am I a candidate for surgery, PRRT (Lutathera), or other treatments?,What symptoms should make me go to the emergency room right away?,Are there clinical trials I should consider?,What dietary or lifestyle changes can help manage my symptoms?
Common questions about OBSOLETE: Neuroendocrine tumor of small intestine
What is OBSOLETE: Neuroendocrine tumor of small intestine?
This entry in the Orphanet database is labeled 'OBSOLETE: Neuroendocrine tumor of small intestine,' meaning it has been retired as a standalone rare disease classification. In practice, neuroendocrine tumors of the small intestine — sometimes called small intestine NETs, carcinoid tumors, or midgut NETs — are a group of slow-growing cancers that start in the hormone-producing cells lining the small bowel. These tumors can release hormones and other chemicals directly into the bloodstream, causing a wide range of symptoms throughout the body. The small intestine NETs most commonly arise in the
How is OBSOLETE: Neuroendocrine tumor of small intestine inherited?
OBSOLETE: Neuroendocrine tumor of small intestine follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: Neuroendocrine tumor of small intestine typically begin?
Typical onset of OBSOLETE: Neuroendocrine tumor of small intestine is adult. Age of onset can vary across affected individuals.