Living with Carney triad
A rare condition with three kinds of tumors: in the digestive tract, the lungs, and nerve tissue outside the adrenal glands.
Understanding Carney triad
These are gastrointestinal stromal tumors (GIST), lung chondromas (tumors made of cartilage), and extra-adrenal paragangliomas (tumors of nerve tissue outside the adrenal glands). It usually appears in the teen years or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain
- Diarrhea
- Fatigue
- Fast heart rate (tachycardia)
- Bleeding in the digestive tract
- Fluid in the belly (ascites)
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, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
GIST Support International may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: 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 GIST Support International
- 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
GARD says changes in genes cause Carney triad, but describes it as non-hereditary, which means it is not passed down in families. No specific gene is listed.
Also known as: gastric leiomyosarcoma, pulmonary chondroma, and extraadrenal paraganglioma
Patient organizations
- GIST Support InternationalCarney triad · United States
You are more than your diagnosis
Perspectives from people navigating life with Carney triad.
Explore research for Carney triad
Explore actively recruiting Carney triad studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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