Overview
Rare tumors of the small intestine are uncommon cancers or growths that develop in the small bowel — the long, winding tube that connects your stomach to your large intestine. The small intestine is responsible for absorbing most of the nutrients from the food you eat, so tumors here can interfere with digestion and overall health. These tumors can be either benign (non-cancerous) or malignant (cancerous), and they include several different types such as adenocarcinoma, carcinoid tumors (also called neuroendocrine tumors or NETs), gastrointestinal stromal tumors (GISTs), and lymphomas of the small bowel. Because the small intestine is deep inside the body and hard to examine with standard tools, these tumors are often found late. Symptoms can be vague and easy to mistake for more common digestive problems. People may experience abdominal pain, unexplained weight loss, nausea, or bleeding. In some cases, the tumor can block the intestine, which is a medical emergency. Treatment depends heavily on the type of tumor. Surgery is the main approach for many cases. Some types, like NETs, may respond to targeted drugs or hormone-blocking therapies. Others may require chemotherapy or radiation. Early detection greatly improves outcomes, but because these tumors are rare and symptoms are non-specific, diagnosis is often delayed.
Also known as:
Key symptoms:
Abdominal pain or crampingUnexplained weight lossNausea and vomitingFeeling full quickly after eatingBlood in the stool or dark, tarry stoolsFatigue and weakness from anemiaDiarrhea or changes in bowel habitsYellowing of the skin or eyes (jaundice) if the tumor is near the bile ductA lump or mass felt in the abdomenFlushing of the skin (especially with carcinoid/neuroendocrine tumors)Wheezing or difficulty breathing (with carcinoid syndrome)Intestinal blockage causing severe pain and inability to pass stool or gas
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Rare tumor of small intestine.
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Rare Disease Specialist
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 Rare tumor of small intestine.
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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 specific type of small intestine tumor do I have, and how does that affect my treatment options?,Has the tumor spread, and what stage is it at?,Should I be tested for a hereditary cancer syndrome that might have caused this tumor?,What are the goals of treatment — cure, controlling growth, or managing symptoms?,Are there clinical trials I might be eligible for?,What side effects should I expect from treatment, and how will they affect my daily life?,Should my family members be screened or tested for related genetic conditions?
Common questions about Rare tumor of small intestine
What is Rare tumor of small intestine?
Rare tumors of the small intestine are uncommon cancers or growths that develop in the small bowel — the long, winding tube that connects your stomach to your large intestine. The small intestine is responsible for absorbing most of the nutrients from the food you eat, so tumors here can interfere with digestion and overall health. These tumors can be either benign (non-cancerous) or malignant (cancerous), and they include several different types such as adenocarcinoma, carcinoid tumors (also called neuroendocrine tumors or NETs), gastrointestinal stromal tumors (GISTs), and lymphomas of the s
At what age does Rare tumor of small intestine typically begin?
Typical onset of Rare tumor of small intestine is adult. Age of onset can vary across affected individuals.
Which specialists treat Rare tumor of small intestine?
7 specialists and care centers treating Rare tumor of small intestine are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.