Living with Pigmented dermatofibrosarcoma protuberans
A rare skin tumor that grows in the deeper layers of the skin and can look red and brown.
Understanding Pigmented dermatofibrosarcoma protuberans
It is a rare type of dermatofibrosarcoma protuberans (DFSP). It contains dark-colored cells, so it may look multi-colored, such as red and brown. It may start as a painless, slow-growing bump or patch of skin. As it grows, it may grow faster, bleed or hurt.
Signs & symptoms
Symptoms vary from person to person. GARD describes these signs:
- Painless, slow-growing bump or patch of skin
- Red and brown skin color
- Faster growth over time
- Bleeding
- Pain
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
Sarcoma Alliance and Sarcoma Foundation of America 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: Sarcoma Alliance, Sarcoma Foundation of America
- 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 Sarcoma 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
GARD says the cause is unknown. There is no evidence of an inherited risk, and most people have no family history of it.
Also known as: bednar tumor; bednar tumour; pigmented dermatofibrosarcoma; pigmented dermatofibrosarcoma protuberans (bednar tumor); pigmented dermatofibrosarcoma protuberans of skin; pigmented storiform neurofibroma
Patient organizations
- Sarcoma AlliancePigmented dermatofibrosarcoma protuberans · United States
- Sarcoma Foundation of AmericaPigmented dermatofibrosarcoma protuberans · United States
You are more than your diagnosis
Perspectives from people navigating life with Pigmented dermatofibrosarcoma protuberans.
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