Living with Mycosis fungoides
The most common form of cutaneous T-cell lymphoma, a blood cancer that shows up on the skin as patches, plaques, or tumors.
Understanding Mycosis fungoides
The skin cells themselves are not cancerous. The skin problems happen when cancerous T cells move from the blood into the skin. It usually appears in adults over age 50, although children can be affected. It may progress slowly through stages: patches (flat, scaly, red or pink areas that can itch), then plaques (raised lesions), then sometimes tumors. Not everyone goes through every stage.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Flat, scaly pink or red patches (often itchy)
- Raised skin plaques
- Itching
- Skin tumors
- Redness of the skin
- Swollen lymph nodes
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 blood and bone marrow specialists, cancer 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
Cutaneous Lymphoma Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Cutaneous Lymphoma 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 Cutaneous Lymphoma Foundation 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: classic mycosis fungoides; ctcl/ mycosis fungoides; cutaneous t-cell lymphoma/mycosis fungoides; mf; mf - mycosis fungoides; mycosis fungoides (clinical)
Patient organizations
- Cutaneous Lymphoma FoundationMycosis fungoides · United States
- Lymphoma Research FoundationMycosis fungoides · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Mycosis fungoides.
Explore research for Mycosis fungoides
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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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