Cutaneous T-cell Lymphoma

Expert Review & Update by

Cutaneous Lymphoma Foundation’s Medical Advisory Council - July, 2018

My Personal Journey with Cutaneous Lymphoma
JC Ephraim shares his experience being diagnosed with cutaneous lymphoma and treatment journey. JC also shares the positive impact the Cutaneous Lymphoma Foundation has made in his life.

JC Ephraim
Kent, WA

Definition
What is Cutaneous T-cell Lymphoma?

Cutaneous T-cell lymphoma (CTCL) is a general term for several types of T-cell lymphomas of the skin, including mycosis fungoides, Sézary syndrome, primary cutaneous anaplastic large cell lymphoma, lymphomatoid papulosis, granulomatous slack skin disease, pagetoid reticulosis, and subcutaneous panniculitis-like T-cell lymphoma, to name a few. Most CTCLs typically fall into the category of indolent (i.e. chronic) lymphomas – treatable, but not curable and usually not life-threatening.

CTCL is sometimes wrongly referred to as a skin cancer because it affects the skin, but this is not a precise use of the term “skin cancer.”

Skin cancer usually refers to cancers that develop from other, non-lymphoid cells of the skin, including epidermal cells (which lead to squamous cell carcinoma or basal cell carcinoma) and melanocytes (which lead to melanoma). 

In CTCL, malignant T-cells reside in the skin, generally causing a rash. In the most common type of CTCL, mycosis fungoides, the rash can look like other common skin conditions like eczema or psoriasis, and might be present for years or even decades before it’s diagnosed as CTCL.

Cutaneous lymphoma 101
Knowing where to start when you learn you have cutaneous lymphoma can be a challenge. Cutaneous lymphoma specialist Dr. Stuart Lessin provides an overview of the important information and concepts every patient with cutaneous lymphoma and caregivers should know.

Expert Presenter

Stuart Lessin, MD, Medical Director, KGL Skin Study Center

How common is Cutaneous T-cell Lymphoma?

As a group, CTCL is a rare family of diseases, with approximately 3,000 new cases reported in the United States every year. CTCL is more common in men compared to women and in patients older than 50 years of age compared to younger people. By 70 years old, there is a four-fold increase in the number of cases of CTCL. Since the disease has a slow course and diagnosis is sometimes difficult, there are probably many more people living with CTCL than current numbers estimate.

The two most common types of CTCL are mycosis fungoides (MF) and Sézary syndrome (SS). Together, they make up about three quarters of all CTCL.

What causes Cutaneous T-cell Lymphoma?

There is no single clear cause for CTCL, though there is active ongoing research to look for possible causes.

It is important to know that CTCL is not contagious. It is not an infection and cannot be passed from person to person.

HOW IS CUTANEOUS T-CELL LYMPHOMA DIAGNOSED?

CTCL is diagnosed initially by knowledgeable dermatologists or oncologists.

Typical procedures done to diagnose CTCL include:

  • a complete physical exam (including a thorough skin exam);
  • a skin and/or lymph node biopsy (removal of a small piece of tissue) for examination under the microscope by a pathologist (a doctor who studies tissues and cells to identify diseases);
  • blood tests;
  • and possibly imaging tests such as CT (computerized axial tomography and/or PET (positron emission tomography) scans.  

It is very important to confirm any diagnosis of CTCL by a dermatopathologist or a hematopathologist who has expertise in diagnosing cutaneous lymphomas.

Treatment Options
How is cutaneous T-cell lymphoma treated?

Treatments vary from patient to patient, depending on symptoms, stage of disease and personal health profile. Treatments are either directed at the skin (skin-directed therapies) or the entire body (systemic therapies). It is important that patients discuss fully with their physician all the treatment options before deciding on a course of action.

Skin-directed therapies include ultraviolet light (PUVA, narrow-band UVB), topical steroids, topical chemotherapy (nitrogen mustard, carmustine), topical retinoids, local radiation to single lesions or total skin electron beam (TSEB) radiation. As most patients with CTCL have only skin disease, there is a lot of ongoing active research into new topical therapies. Full-body, or systemic, therapies include oral retinoids, photopheresis, interferon, targeted agents, antibody therapies, immunotherapy, and systemic chemotherapy. It’s common for treatments to be prescribed in combination (such as a topical and a systemic therapy together), with the goal of achieving the best, long-term benefits for your condition with the least side effects.

Learn More

My personal journey with cutaneous lymphoma: Neil Dicker

Neil Dicker retired dentist who is an avid cyclist discusses his leading-edge treatments and life in remission.  He was diagnosed in 2005 with Stage 3 of Sezary syndrome, a form of cutaneous T-cell lymphoma (CTCL). Read Neil's story and watch his video.

Skin-Directed Therapies

Individuals with disease limited to the skin (stages I and II) can often achieve a good response with one of the readily available skin-directed therapies. Learn more about skin-directed therapies.

Systemic Therapies

Individuals who have only partial or short responses to skin-directed therapies, or more advanced stages of disease, may benefit from systemic therapy. Learn more about available systemic therapies.
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