Living with Familial atypical multiple mole melanoma syndrome
An inherited condition with many moles and a higher chance of melanoma, and sometimes pancreatic cancer.
Understanding Familial atypical multiple mole melanoma syndrome
People often have more than 50 moles. Some also have a higher risk of pancreatic cancer and other cancers. It can be noticed at any time in life.
Signs & symptoms
GARD describes this feature in its summary:
- Many moles (often more than 50)
- A family history of melanoma
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.
- 3Consider genetic testing
Changes in CDKN2A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
FORCE: Facing Our Risk of Cancer Empowered, Melanoma Research Foundation and 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: FORCE: Facing Our Risk of Cancer Empowered, 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 FORCE: Facing Our Risk of Cancer Empowered 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 the CDKN2A gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: b-k mole syndrome; familial atypical mole melanoma syndrome; familial atypical mole syndrome; familial atypical multiple mole melanoma-pancreatic carcinoma syndrome; familial clark nevus syndrome; familial dysplastic nevus syndrome
Patient organizations
- FORCE: Facing Our Risk of Cancer EmpoweredFamilial atypical multiple mole melanoma syndrome · United States
- Melanoma Research AllianceFamilial atypical multiple mole melanoma syndrome · United States
- Melanoma Research FoundationFamilial atypical multiple mole melanoma syndrome · United States
- The Skin Cancer FoundationFamilial atypical multiple mole melanoma syndrome · United States
- American Cancer SocietyFamilial atypical multiple mole melanoma syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial atypical multiple mole melanoma syndrome.
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