Ensuring the Patient Is at the Center of the CTCL Care Team (Chapter 3)

Larisa Geskin, MD, Professor of Dermatology at Columbia University Medical Center and Director of the Comprehensive Skin Cancer Center at the Division of Cutaneous Oncology in the Department of Dermatology, discusses how patients with cutaneous T-cell lymphoma (CTCL) should be at the center of the care team.
The diagnosis of CTCL is often challenging; as a result, delays in diagnosis (and subsequently work-up and treatment) can be significant. Part of the reason is the variability in how individual patients present with CTCL and its subtypes. Because mycosis fungoides progresses slowly, some patients may not experience progression beyond their initial symptoms, even beyond 10 years. Patients with mycosis fungoides or Sézary syndrome also have overlap in manifestations; in fact, Sézary syndrome was once classified as a malignant, leukemic variant of mycosis fungoides but is now recognized as a distinct CTCL subtype.
In patients diagnosed with early-stage mycosis fungoides , the most common form of CTCL, prognosis is often quite good. The slowly progressing nature of the disease and effective early-stage treatments yield 95% 10-year disease-specific survivals. According to the International Society for Cutaneous Lymphomas/European Organisation for Research and Treatment of Cancer, those diagnosed as having mild or limited disease, for example, are often considered to have a low risk of progression.
For patients with stage IIB disease (considered advanced disease, marked by the appearance of cutaneous tumors), the 10-year disease-specific survival is 42%. In those with generalized erythroderma (stage III), the 10-year survival is still around 45%. Median overall survival in patients with stage IIIA disease is 4.7 years. Patients with stage IVB disease, wherein the malignancy has spread to the lymph nodes or organs, have a median overall survival of less of 1.5 years and a 10-year disease-specific survival of less than 20%.