A Patient’s Guide to Understanding
Cutaneous Lymphoma
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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).
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.
There is no known cure for CTCL, though some patients enter long-term
remission with treatment and live symptom-free for many, many years. The
most recent research indicates that patients diagnosed with the early stages
of the most common type of CTCL – mycosis fungoides (which makes up
about 70% of CTCL) – have a normal life expectancy. With advances in
research and new treatment options resulting from physician collaboration
and clinical trials, CTCL patients are experiencing better care and an array
of effective treatment options that work for them.
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.
The twomost common types of CTCL aremycosis fungoides (MF) and Sézary
syndrome (SS). Together, theymake up about three quarters of all CTCL.
