Living with Gastrointestinal stromal tumor
A tumor in the digestive tract, most often in the stomach or small intestine, usually found in adults.
Understanding Gastrointestinal stromal tumor
GISTs are thought to grow from special cells called interstitial cells of Cajal. A person can have one or more tumors. They are usually found in adults between ages 40 and 70, and rarely in children and young adults. Small tumors may cause no symptoms. People with a family history often have multiple tumors.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain or swelling
- Nausea and vomiting
- Bleeding in the digestive tract
- Fatigue
- Trouble swallowing (dysphagia)
- Blocked intestine or constipation
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, digestive system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Life Raft Group, GIST Cancer Research Fund and GIST Support International may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Life Raft Group, GIST Cancer Research Fund, GIST Support International
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with The Life Raft Group and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause some cases of GIST, which can be inherited in an autosomal dominant way (one changed copy of a gene is enough). People with no family history typically have a single tumor (sporadic GIST).
Also known as: gant; gastrointestinal stroma tumor; gastrointestinal stroma tumour; gastrointestinal stromal neoplasm; gastrointestinal stromal sarcoma; gastrointestinal stromal tumor (gist)
Patient organizations
- The Life Raft GroupGastrointestinal stromal tumor · United States
- GIST Cancer Research FundGastrointestinal stromal tumor · United States
- GIST Support InternationalGastrointestinal stromal tumor · United States
- Sarcoma Foundation of AmericaGastrointestinal stromal tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Gastrointestinal stromal tumor.
Explore research for Gastrointestinal stromal tumor
Explore actively recruiting Gastrointestinal stromal tumor studies with HealthSpark.
Find actively recruiting studies for Gastrointestinal stromal tumor with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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