Living with Primary cutaneous T-cell lymphoma
A rare cancer that starts in T cells, a type of white blood cell, and builds up in the skin.
Understanding Primary cutaneous T-cell lymphoma
The cancer cells build up in the skin, where they can form patches, plaques or other skin changes as they grow and spread locally.
Signs & symptoms
GARD describes these signs:
- Patches on the skin
- Raised plaques on the skin
- Other skin changes
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: ctcl - cutaneous t-cell lymphoma; cutaneous lymphoma; cutaneous t-cell lymphoma
Patient organizations
- Cutaneous Lymphoma FoundationPrimary cutaneous T-cell lymphoma · United States
- Blood Cancer UnitedPrimary cutaneous T-cell lymphoma · United States
- HealthTree FoundationPrimary cutaneous T-cell lymphoma · United States
- Lymphoma Research FoundationPrimary cutaneous T-cell lymphoma · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary cutaneous T-cell lymphoma.
Explore research for Primary cutaneous T-cell lymphoma
Explore actively recruiting Primary cutaneous T-cell lymphoma studies with HealthSpark.
Find actively recruiting studies for Primary cutaneous T-cell lymphoma 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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