Cutaneous T-cell Lymphoma

This piece was written by Guide Contributors
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?

CTCL is the acronym for cutaneous T-cell lymphoma, a general term for several types of lymphomas of the skin that derive from T-cells, 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.

In CTCL, malignant T-cells travel to the upper layers of the skin, causing a rash, which leads to diagnosis.

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 is the designation for cancers that develop from other, non-lymphoid cells of the skin, including epidermal cells (which lead to squamous cell carcinoma) and melanocytes or pigment cells (which lead to melanoma). 

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 relatively rare family of diseases with approximately 3,000 new cases reported in the United States every year. More common among men than women, CTCL occurs more in patients older than 50 years of age than in younger people. It is important to know, too, that CTCL is not contagious. It is not an infection and cannot be passed from person to person.

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.

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, UVB, narrow-band UVB), topical steroids, topical chemotherapy (nitrogen mustard, carmustine), topical retinoids, local radiation to single lesions or total skin electron beam (TSEB) radiation. Full-body, or systemic, therapies include oral retinoids, photopheresis, interferon, and systemic chemotherapy. All treatments may be prescribed alone or in combination, with the goal of achieving the best, long-term benefits for the patient.

Learn More

Fertility

Couple with physician
When it comes to family planning, using even mild therapies for a long period of time can be an issue. Because many therapies only work while they are being given, aspects of family planning often need to be considered when choosing a therapy.

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.

Staging Cutaneous T-cell Lymphoma

Staging describes how much of the body is affected by cutaneous lymphoma and where. Identifying your stage is important in determining appropriate treatment.
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