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Mycosis fungoides

What are the aims of this leaflet?

This leaflet has been written to help you understand more about mycosis fungoides.  It tells you what it is, what causes it, what can be done about it, and where you can find out more about it.

What is mycosis fungoides?

The name ‘mycosis fungoides’ is a bad one: it was coined 200 years ago and hints, quite wrongly, that mycosis fungoides is some sort of fungal infection. In fact it is one type of a condition known as a ‘cutaneous T-cell lymphoma’.

Lymphocytes are a type of white cell.  They are found in the blood and help to protect us from infections.  There are 2 types of lymphocyte: B-cells and T-cells.  A cutaneous T-cell lymphoma is an uncontrolled growth within the skin of the T-cells.  Mycosis fungoides is rare and, for many sufferers, it does not affect the quality of life or life expectancy. 

What causes mycosis fungoides?

Its cause is unknown. Mycosis fungoides can occur at any age but it is most common in the 40-60 year old age group.  You cannot catch it or give it to anyone else.

Is mycosis fungoides hereditary?

No.

What are the symptoms of mycosis fungoides?

Itching is the main symptom for many patients.

What does mycosis fungoides look like?

Mycosis fungoides confines itself to the skin and rarely affects other parts of the body. The skin changes develop slowly over the years. At first they appear as irregularly shaped and variably itchy dry patches on the skin. It may be hard to make a diagnosis at that stage, as early mycosis fungoides can look rather like common skin conditions such as eczema or psoriasis.  Later, some of the patches may thicken up to become ‘plaques’.  In some cases mycosis fungoides develops gradually from skin patches that may have been present from many years. Occasionally the skin becomes red all over (erythroderma).

In many cases mycosis fungoides never gets beyond the stage of patches and plaques. Rarely, in a few patients, the skin patches may thicken, enlarge and ulcerate. These areas may be painful and discharge fluid.  In only about one patient in ten does mycosis fungoides affect the internal organs.

How will it be diagnosed?

It often takes several years before the diagnosis of mycosis fungoides is made.  Up to that time the rash may be non-specific, looking rather like a low-grade eczema or psoriasis.  A skin biopsy is often required to confirm the diagnosis, and may have to be repeated before the diagnosis can be made firmly.  The blood count is usually normal.

Can it be cured?

No.  There is no guarantee that treatment will switch mycosis fungoides off completely, but often it puts it into remission. 

How can it be treated?

Local treatments are all that is needed for early mycosis fungoides.  They include the following:

• A good skin care regime, with the regular use of moisturisers, will help to prevent dryness and keep the skin supple.  
• Your doctor may prescribe steroid creams or ointments to relieve the itching that may occur, and this may be the only treatment needed. Steroids are safe to use, if put on correctly, as advised by your doctor or nurses at the dermatology department.

Other treatments:

If widespread areas are affected, or if the symptoms are not controlled, then other treatments can be considered. Your dermatologist will discuss these with you.

• PUVA is a combination treatment. You will take psoralen (P) pills two hours before exposing your skin to long wave ultra violet light (UVA). Usually PUVA treatment will be given twice a week until your skin is clear, and then less often.  Some patients respond well to single weekly treatments.  A bath solution of psoralen can be used instead of the tablets, but this is mainly used for psoriasis - your treatment may therefore seem to be different from that of the other patients having PUVA for other skin conditions.
• Radiotherapy: if large thickened patches occur, radiotherapy can be given to them using low voltage radiation.  This method is used to treat individual areas, in contrast to the approach with PUVA - which treats the whole skin surface.

What can I do?

Remember that mycosis fungoides affects individuals in different ways and that the information given above is generalised.  If you want to know more about mycosis fungoides, please ask the consultant dermatologist supervising your care.  No special diet is needed, and there need be no restrictions on your activities.

Where can I get more information about mycosis fungoides?

• Links to patient support groups:

Groups.msn/MycosisFungoidesUK

www.mffoundation.org/

• Reference used in text:

Whittaker SJ, Marsden JR, Spittle M, Russell Jones R. Guidelines for the management of primary cutaneous t-cell lymphomas.  British Journal of Dermatology (2003); volume 149: page 1095.

• Web links to detailed leaflets:

www.emedicine.com/med/topic1541.htm

www.dermnetnz.org/dna.CTCL/ctcl.html