Living with Tumor predisposition syndrome 3
An inherited condition with a higher chance of developing several kinds of tumors, including melanoma, usually in adulthood.
Understanding Tumor predisposition syndrome 3
This includes melanoma, a type of skin cancer. Tumors can affect the skin, connective tissue, nerves, and blood. The risk goes up with age. Tumors usually appear in adulthood but can sometimes develop in childhood. Not everyone who inherits the gene change will develop symptoms.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Melanoma Research Foundation and The Skin Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Melanoma Research Foundation, The Skin Cancer Foundation
- 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 Melanoma Research Alliance 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
This condition is caused by changes in the POT1 gene. It is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: cmm10; glioma susceptibility 9; glioma susceptibility type 9; glm9; long telomere syndrome, pot1-related; malignant glioma caused by mutation in pot1
Patient organizations
- Melanoma Research AllianceTumor predisposition syndrome 3 · United States
- Melanoma Research FoundationTumor predisposition syndrome 3 · United States
- The Skin Cancer FoundationTumor predisposition syndrome 3 · United States
- American Cancer SocietyTumor predisposition syndrome 3 · United States
You are more than your diagnosis
Perspectives from people navigating life with Tumor predisposition syndrome 3.
Explore research for Tumor predisposition syndrome 3
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