Living with Familial melanoma
An inherited form of melanoma, a skin cancer that starts in pigment-making cells, that runs in families.
Understanding Familial melanoma
Melanoma usually occurs on the skin, but in about 5 percent of cases it starts in other tissues such as the eyes or the lining of the mouth. It can develop at any age, most often in people in their fifties to seventies. Having many moles (generally more than 25) is linked to a higher risk.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Melanoma
- Moles (nevi)
- Freckling
- Dry skin
- Changes in hair
- Changes in the lymphatic system
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Skin Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: 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
Changes in genes cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: hereditary cutaneous melanoma; hereditary melanoma; hereditary melanoma (disease)
Patient organizations
- Melanoma Research AllianceFamilial melanoma · United States
- The Skin Cancer FoundationFamilial melanoma · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial melanoma.
Explore research for Familial melanoma
Explore actively recruiting Familial melanoma studies with HealthSpark.
Find actively recruiting studies for Familial melanoma with HealthSpark. Share your city to explore research near you.
- 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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