Overview
A mesenchymal tumor of the small intestine is a growth that starts in the connective tissue cells of the small intestine — the part of the digestive system that connects the stomach to the large intestine. Unlike tumors that grow from the inner lining of the gut, these tumors arise from the structural or supportive tissue layers of the intestinal wall. The most common type in this category is a gastrointestinal stromal tumor, often called a GIST, though other types include leiomyomas (smooth muscle tumors), leiomyosarcomas, and schwannomas (nerve sheath tumors). These tumors can range from completely harmless (benign) to aggressive (malignant), depending on their type, size, and how fast the cells are dividing. Many people have no symptoms at first, and the tumor is found by accident during a scan or procedure done for another reason. When symptoms do appear, they often include abdominal pain, bleeding in the digestive tract, or a feeling of fullness. Some tumors can grow large enough to be felt as a lump in the belly. Treatment depends on the type and stage of the tumor. Surgery to remove the tumor is the main treatment for most cases. For GISTs specifically, targeted drug therapy — such as imatinib (Gleevec) — has transformed outcomes and is used before or after surgery, or for tumors that cannot be removed. Regular follow-up is important because some of these tumors can come back.
Also known as:
Key symptoms:
Abdominal pain or crampingBlood in the stool or dark, tarry stoolsVomiting bloodFeeling full quickly when eatingUnexplained weight lossFatigue or tiredness from blood loss (anemia)A lump or mass felt in the bellyNausea or vomitingBloating or swelling of the abdomenBowel obstruction causing severe cramping and inability to pass stool
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 Mesenchymal tumor of small intestine.
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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 Mesenchymal tumor of small intestine.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.What exact type of mesenchymal tumor do I have, and is it benign or malignant?,Has my tumor been tested for KIT, PDGFRA, or other gene mutations, and how does that affect my treatment options?,Is surgery possible for my tumor, and what would recovery look like?,If I need targeted therapy like imatinib, how long will I need to take it and what side effects should I watch for?,How often will I need follow-up scans, and what are we watching for?,Should I be referred to a specialized sarcoma center or get a second opinion?,Is there any reason to think my family members could be at increased risk, and should they be tested?
Common questions about Mesenchymal tumor of small intestine
What is Mesenchymal tumor of small intestine?
A mesenchymal tumor of the small intestine is a growth that starts in the connective tissue cells of the small intestine — the part of the digestive system that connects the stomach to the large intestine. Unlike tumors that grow from the inner lining of the gut, these tumors arise from the structural or supportive tissue layers of the intestinal wall. The most common type in this category is a gastrointestinal stromal tumor, often called a GIST, though other types include leiomyomas (smooth muscle tumors), leiomyosarcomas, and schwannomas (nerve sheath tumors). These tumors can range from co
How is Mesenchymal tumor of small intestine inherited?
Mesenchymal tumor of small intestine follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Mesenchymal tumor of small intestine typically begin?
Typical onset of Mesenchymal tumor of small intestine is adult. Age of onset can vary across affected individuals.
Which specialists treat Mesenchymal tumor of small intestine?
3 specialists and care centers treating Mesenchymal tumor of small intestine are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.