Overview
Rare epithelial tumors of the small intestine are uncommon cancers or abnormal growths that start in the cells lining the inside of the small intestine — the part of the digestive tract between the stomach and the large intestine. The small intestine is responsible for absorbing nutrients from food, so tumors here can interfere with digestion and overall health. These tumors can be benign (non-cancerous) or malignant (cancerous), and they include types such as adenocarcinoma, carcinoid tumors (also called well-differentiated neuroendocrine tumors), and other rare epithelial growths. Because the small intestine is long and hard to examine, these tumors are often found late. Symptoms can be vague at first, which makes early diagnosis challenging. People may experience belly pain, unexplained weight loss, nausea, or signs of a blockage in the intestine. Some tumors bleed slowly, causing anemia and fatigue. Treatment depends on the type and stage of the tumor but usually involves surgery to remove the growth, sometimes combined with chemotherapy or targeted therapy. Because these tumors are so rare, treatment is often guided by specialists at major cancer centers with experience in rare gastrointestinal cancers.
Also known as:
Key symptoms:
Abdominal pain or crampingUnexplained weight lossNausea and vomitingFeeling full quickly after eatingFatigue and weakness from anemiaDark or tarry stools (sign of bleeding)Blood in the stoolBloating or swelling of the abdomenDiarrhea 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 abdomen
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
3 eventsM.D. Anderson Cancer Center — PHASE2
SWOG Cancer Research Network — PHASE2
Academic and Community Cancer Research United — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableLynparza
for the maintenance treatment of adult patients with deleterious or suspected deleterious germline or somatic BRCA-mutated advanced epithelial ovarian, fallopian tube or primary peritoneal cancer who …
for the maintenance treatment of adult patients with deleterious or suspected deleterious germline or somatic BRCA-mutated advanced epithelial ovarian, fallopian tube or primary peritoneal cancer who are in complete or partial response to first-line platinum-based chemotherapy
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
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Rare epithelial 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 exact type of epithelial tumor do I have, and how does that affect my treatment options?,Has the tumor spread, and if so, where?,Should I be tested for a hereditary cancer syndrome like Lynch syndrome or FAP?,What are the goals of treatment — cure, control, or symptom relief?,Are there any clinical trials I might be eligible for?,How will treatment affect my ability to eat and absorb nutrients?,What signs or symptoms should prompt me to seek emergency care?
Common questions about Rare epithelial tumor of small intestine
What is Rare epithelial tumor of small intestine?
Rare epithelial tumors of the small intestine are uncommon cancers or abnormal growths that start in the cells lining the inside of the small intestine — the part of the digestive tract between the stomach and the large intestine. The small intestine is responsible for absorbing nutrients from food, so tumors here can interfere with digestion and overall health. These tumors can be benign (non-cancerous) or malignant (cancerous), and they include types such as adenocarcinoma, carcinoid tumors (also called well-differentiated neuroendocrine tumors), and other rare epithelial growths. Because th
How is Rare epithelial tumor of small intestine inherited?
Rare epithelial tumor of small intestine follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare epithelial tumor of small intestine typically begin?
Typical onset of Rare epithelial tumor of small intestine is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Rare epithelial tumor of small intestine?
Yes — 3 recruiting clinical trials are currently listed for Rare epithelial tumor 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 epithelial tumor of small intestine?
4 specialists and care centers treating Rare epithelial tumor of small intestine are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Rare epithelial tumor of small intestine?
1 patient support program are currently tracked on UniteRare for Rare epithelial tumor of small intestine. See the treatments and support programs sections for copay assistance, eligibility, and contact details.