Overview
Primary cutaneous anaplastic large cell lymphoma (pcALCL) is a rare type of skin lymphoma, which is a cancer that starts in certain white blood cells called T-cells and mainly affects the skin. It belongs to a group of conditions known as primary cutaneous CD30-positive lymphoproliferative disorders. The disease typically appears as one or a few firm, reddish or violet-colored lumps or nodules on the skin that may grow over weeks to months. These nodules can sometimes break open and form ulcers. Unlike some other lymphomas, pcALCL usually stays in the skin and rarely spreads to lymph nodes or internal organs, which gives it a generally favorable outlook. The condition most commonly affects adults, particularly those in middle age, and is more common in men than women. It is important to distinguish pcALCL from systemic anaplastic large cell lymphoma, which is a more aggressive cancer that starts inside the body and may also involve the skin. The diagnosis is made through a skin biopsy, where a doctor removes a piece of the affected skin and examines it under a microscope. The cancer cells in pcALCL are large and unusual-looking and typically express a protein called CD30 on their surface. Treatment depends on how many skin lesions are present and whether the disease has spread. For a single lesion or a small number of lesions, surgery to remove them or radiation therapy directed at the affected area is often very effective. In some cases, the nodules may even go away on their own without treatment. For patients with more widespread skin disease or rare cases that spread beyond the skin, chemotherapy or other systemic treatments may be needed. The overall prognosis is quite good, with most patients living many years after diagnosis.
Also known as:
Key symptoms:
Firm, reddish or violet skin lumps or nodulesSkin nodules that may break open and form ulcersSingle or small number of skin lesions, often on the arms or legsLesions that grow over weeks to monthsSkin lesions that may come and go on their ownRarely, swollen lymph nodes near the affected skinGenerally no fever, night sweats, or weight loss unless disease spreadsItching or tenderness at the site of the noduleCrusting or scabbing over the skin lesion
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventEuropean Organisation for Research and Treatment of Cancer - EORTC — PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableAdcetris
Adult patients with primary cutaneous anaplastic large cell lymphoma (pcALCL) or CD30-expressing mycosis fungoides (MF) who have received prior systemic therapy
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Primary cutaneous anaplastic large cell lymphoma.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.Is my lymphoma limited to the skin, or has it spread to lymph nodes or other organs?,What treatment do you recommend for my specific situation, and what are the side effects?,What is the chance that my disease will come back after treatment, and how will we monitor for recurrence?,Should I have any molecular or genetic testing done on my biopsy to help predict my outlook?,How often will I need follow-up visits and skin checks?,Are there any clinical trials available that I might be eligible for?,What symptoms should prompt me to contact you or seek emergency care between appointments?
Common questions about Primary cutaneous anaplastic large cell lymphoma
What is Primary cutaneous anaplastic large cell lymphoma?
Primary cutaneous anaplastic large cell lymphoma (pcALCL) is a rare type of skin lymphoma, which is a cancer that starts in certain white blood cells called T-cells and mainly affects the skin. It belongs to a group of conditions known as primary cutaneous CD30-positive lymphoproliferative disorders. The disease typically appears as one or a few firm, reddish or violet-colored lumps or nodules on the skin that may grow over weeks to months. These nodules can sometimes break open and form ulcers. Unlike some other lymphomas, pcALCL usually stays in the skin and rarely spreads to lymph nodes or
How is Primary cutaneous anaplastic large cell lymphoma inherited?
Primary cutaneous anaplastic large cell lymphoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Primary cutaneous anaplastic large cell lymphoma typically begin?
Typical onset of Primary cutaneous anaplastic large cell lymphoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Primary cutaneous anaplastic large cell lymphoma?
Yes — 1 recruiting clinical trial is currently listed for Primary cutaneous anaplastic large cell lymphoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Primary cutaneous anaplastic large cell lymphoma?
15 specialists and care centers treating Primary cutaneous anaplastic large cell lymphoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.