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Genetic and Rare Diseases Information Center (GARD)

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Mycosis fungoides

Other Names for this Disease
  • Alibert-Bazin syndrome
  • Granuloma fungoides
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Your Question

I have been recently diagnosed with mycosis fungoides. I haven't been staged yet. What can I expect?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What can be expected during the staging process for mycosis fungoides?

The stage of mycosis fungoides (MF) is used to describe the extent of the disease in the body. Staging is usually based on the number of cancer cells and/or size of the tumor(s) present, whether lymph nodes contain cancer, and whether the cancer has spread from the skin to other parts of the body. Procedures that may be used in the staging process include chest x-ray; CT scan (CAT scan); MRI (magnetic resonance imaging); PET scan (positron emission tomography scan); and lymph node biopsy.[1]

Detailed information about the stages of mycosis fungoides is available on the National Cancer Institutes's Web site and can be viewed here.
Last updated: 3/7/2013

What is the long-term outlook for individuals with mycosis fungoides?

Mycosis fungoides (MF) has an indolent (low-grade) clinical course, which means that it may persist in one stage, or may slowly progress to another stage (from patches to thicker plaques and eventually to tumors) over years or sometimes decades.[2] The condition is incurable in most affected individuals, with the exception of those with stage IA disease. The prognosis for each individual varies and is related to the disease stage at the time of diagnosis, the type and extent of skin lesions, and whether the disease is present in other areas of the body (extracutaneous).[3]
Studies regarding the survival outcomes and prognosis have generally found that:
  • individuals with stage IA disease at the time od diagnosis who undergo treatment have a normal life expectancy (e.g. that expected based on age, sex and race) -- a 10-year survival rate of 97-98%.
  • individuals with stage IIB disease with cutaneous tumors have a median survival rate of 3.2 years (a 10-year survival rate of 42%).
  • those with stage III disease (generalized erythroderma) have a median survival rate of 4-6 years (a 10-year survival rate of 83%).
  • individuals with extracutaneous stage IVA (lymph nodes) or stage IVB (viscera) disease have a survival rate of less than 1.5 years (a 10-year survival rate of 20% for those with histologically documented lymph node involvement).
  • individuals with effaced lymph nodes, visceral involvement, and transformation to large T-cell lymphoma have an aggressive clinical course and usually die of systemic involvement or infections.

Other factors that may be associated with reduced survival and increased risk of disease progression include increased age, male sex, and increased lactate dehydrogenase (LDH).[3]

Last updated: 3/7/2013