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Frequently asked questions about MF-CTCL

What type of cancer is MF-CTCL?

  • Mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL) is the most common form of cutaneous T-cell lymphoma (CTCL), accounting for about half of all CTCL cases1
  • Sézary syndrome is an advanced, variant form of mycosis fungoides, which is characterized by the presence of lymphoma cells in the blood1
  • Lymphoma is the most common blood cancer1
  • T-cell lymphomas account for approximately 7% of all non-Hodgkin lymphomas in the United States1

How many cases of MF-CTCL exist in the United States?

  • There are approximately 16,000 to 20,000 known cases of MF-CTCL across the United States2

Who has a high risk of developing MF-CTCL?

  • Patients who are male, African American, and age 55 to 60 years are at increased risk of developing MF-CTCL3
  • MF-CTCL incidence by race per 1 million persons3:
  • —African American (6.1)
    —White (4.0)
    —Asian/Pacific Islander (3.0)
    —Native American/Other (0.9)

Could incidence of MF-CTCL be underreported?

  • MF-CTCL, a rare disease, may be underreported due to the difficulty of diagnosis2,4
  • MF-CTCL is difficult to diagnose in its early stages because the symptoms and skin biopsy findings are similar to those of other skin conditions2

How is MF-CTCL diagnosed?

  • Clinical examination (including complete skin examination, palpation of peripheral lymph nodes and palpation for organomegaly/masses), multiple skin biopsies, and laboratory tests are necessary for diagnosis5
  • Imaging studies such as a CT or PET-CT scan may be necessary as clinically indicated depending on the stage of the disease5,6

Who treats MF-CTCL?

  • Early stage MF-CTCL is routinely managed by qualified dermatologists

Where can patients learn more about MF-CTCL?

References:

  1. Lymphoma Research Foundation. Getting the facts: cutaneous T-cell lymphoma. Lymphoma Research Foundation website. https://www.lymphoma.org/wp-content-uploads/2017/06/LRF_FACTSHEET_Cutaneous_TCell_Lymphoma_CTCL.pdf. Updated August 2017. Accessed November 19, 2018.
  2. Cutaneous Lymphoma Foundation. CTCL-MF fast facts. Cutaneous Lymphoma Foundation website. https://www.clfoundation.org/sites/ default/files/2017-08/cl_fast_facts.pdf. Accessed November 30, 2018.
  3. Wilson LD, Hinds GA, Yu JB. Age, race, gender, stage and the incidence of cutaneous lymphoma. Clin Lymphoma Myeloma Leuk. 2012;12(5):291-296.
  4. Chuang TY, Su WP, Muller SA. Incidence of cutaneous T cell lymphoma and other rare skin cancers in a defined population. J Am Acad Dermatol. 1990;23:254-256.
  5. Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Primary Cutaneous Lymphomas V.2.2019. ©National Comprehensive Cancer Network, Inc. 2018. All rights reserved. Accessed December 17, 2018. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.
  6. Cutaneous Lymphoma Foundation. Mycosis fungiodes. Cutaneous Lymphoma Foundation website. https://www.clfoundation.org/mycosis-fungoides. Accessed January 14, 2019.