Overview
Rare carcinoma of the small intestine refers to cancers that start in the lining of the small intestine — 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. While cancer can develop anywhere in the digestive tract, the small intestine is actually one of the least common places for cancer to form, making these tumors quite rare. Several types of cancer can arise here, including adenocarcinoma (the most common type, starting in gland-like cells), carcinoid tumors (also called neuroendocrine tumors), lymphoma, and sarcoma. Together, these are sometimes called small bowel cancer or small intestine cancer. Because the small intestine is deep inside the body and symptoms can be vague at first, this cancer is often diagnosed at a later stage. Common symptoms include belly pain or cramping, unexplained weight loss, nausea, vomiting, and blood in the stool. Some people develop a blockage in the intestine, which can cause severe pain and vomiting. Treatment depends on the type and stage of cancer but usually involves surgery to remove the tumor, and may also include chemotherapy, radiation therapy, or targeted drug treatments. Early detection greatly improves outcomes, so awareness of warning signs is important.
Also known as:
Key symptoms:
Belly pain or cramping, especially around the belly button areaUnexplained weight lossNausea and vomitingDark or bloody stoolsFeeling full quickly after eatingDiarrhea or changes in bowel habitsFatigue and low energyYellowing of the skin or eyes (jaundice) if the tumor is near the bile ductA lump or mass that can sometimes be felt in the bellyAnemia (low red blood cell count) causing tiredness and palenessIntestinal blockage causing severe pain and inability to pass stool or gas
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
3 eventsNational Cancer Center, Japan — PHASE2
Tiago Biachi de Castria — PHASE2
Copenhagen University Hospital at Herlev
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Rare carcinoma of small intestine.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 carcinoma 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
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 cancer do I have, and how does that affect my treatment options?,Has the cancer spread beyond the small intestine, and what does that mean for my prognosis?,Is surgery an option for me, and what would recovery look like?,Should I be tested for a hereditary cancer syndrome, and should my family members be tested too?,Are there any clinical trials I might be eligible for?,What dietary changes will I need to make, and should I see a dietitian?,What signs or symptoms should prompt me to call you or go to the emergency room right away?
Common questions about Rare carcinoma of small intestine
What is Rare carcinoma of small intestine?
Rare carcinoma of the small intestine refers to cancers that start in the lining of the small intestine — 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. While cancer can develop anywhere in the digestive tract, the small intestine is actually one of the least common places for cancer to form, making these tumors quite rare. Several types of cancer can arise here, including adenocarcinoma (the most common type, starting in gland-like cells), carcinoid tumors (also called neu
How is Rare carcinoma of small intestine inherited?
Rare carcinoma of small intestine follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare carcinoma of small intestine typically begin?
Typical onset of Rare carcinoma of small intestine is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Rare carcinoma of small intestine?
Yes — 3 recruiting clinical trials are currently listed for Rare carcinoma of 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 Rare carcinoma of small intestine?
7 specialists and care centers treating Rare carcinoma of small intestine are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.