Mesenchymal tumor of small intestine

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3Specialists8Treatment centers

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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

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Mesenchymal tumor of small intestine.

View clinical trials →

No actively recruiting trials found for Mesenchymal tumor of small intestine at this time.

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Specialists

3 foundView all specialists →
RP
Robert Maki, MD, PhD
PHILADELPHIA, PA
Specialist
PI on 8 active trials
MM
Mary L. Keohan, MD
NEW YORK, NY
Specialist
PI on 1 active trial
MG
Mrinal Gounder
NEW YORK, NY
Specialist
PI on 1 active trial2 Mesenchymal tumor of small intestine publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA 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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Community

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Latest news about Mesenchymal tumor of small intestine

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

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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 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.