Living with Dermatofibrosarcoma protuberans
A rare, slow-growing skin cancer that starts in the deeper layers of the skin and can return after removal.
Understanding Dermatofibrosarcoma protuberans
It is a soft tissue sarcoma. The tumor usually starts as a small, firm patch of skin that is purplish, reddish, or flesh-colored, and it grows slowly. It is most common on the torso. People usually first notice it in their thirties. It tends to return after removal but does not often spread.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Firm lump under the skin
- Redness of the skin
- Thickened skin
- Open skin sore (ulcer)
- Skin tumors
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
Sarcoma Foundation of America 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: Sarcoma Foundation of America, 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 Sarcoma Foundation of America 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 doesn't describe a cause for this condition yet.
Also known as: dermatofibrosarcoma; dermatofibrosarcoma protuberans, somatic; dfsp; familial dermatofibrosarcoma protuberans (subtype); giant cell fibroblastoma; giant cell fibroblastoma of skin
Patient organizations
- Sarcoma Foundation of AmericaDermatofibrosarcoma protuberans · United States
- The Skin Cancer FoundationDermatofibrosarcoma protuberans · United States
- American Cancer SocietyDermatofibrosarcoma protuberans · United States
- CancerCareDermatofibrosarcoma protuberans · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dermatofibrosarcoma protuberans.
Explore research for Dermatofibrosarcoma protuberans
Explore actively recruiting Dermatofibrosarcoma protuberans studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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