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PATIENTS & PUBLIC

Mycosis Fungoides

What is Mycosis Fungoides?
Mycosis Fungoides (MF) is a rare slow growing cancer that starts from certain white blood cells called T-cells, which normally live in the skin. These T-cells are part of our immune system and can sometimes turn into cancer cells. MF is the most common type of cancer that starts in these skin T-cells. Recent studies have found that MF is more likely to happen in people with skin of color. In particular, Black people have been found to have more serious problems with MF, including a higher chance of dying from it. One reason for this might be that it is harder to spot the early signs of MF in individuals with darker skin. 

What is the cause of Mycosis Fungoides?
While the exact cause of MF is still unclear, MF is not contagious nor is it believed to be an inherited condition. 

How do I know if I have Mycosis Fungoides?
MF can look different in people with darker skin, and it can sometimes be confused with other skin problems that appear similar. It is usually found in areas that are protected from the sun, like the breasts, groin, buttocks or inner surfaces of the arms and legs.

Common signs and symptoms include:

Patches: Early stages of MF often present as patches that are flat, reddish, and can resemble eczema. The patches may have a wrinkled appearance. In darker skin, these patches may appear darker brown rather than red. 

Plaques: Over time, these patches may thicken and form plaques (or a raised rash). They may be itchy and have a scaly or rough surface.

Tumors: In advanced stages, the plaques may evolve to tumors. These can be raised bumps or nodules on the skin. 

Skin changes: Areas of lighter (hypopigmentation) or darker (hyperpigmentation) skin may occur. 

Itching: This is a common symptom and can range from mild to severe. 

Lymph node and other organ involvement: While rare, in later stages of the condition, lymph nodes or other organs in the body can also become involved. 

A skin biopsy, which means taking a tiny piece of skin to look at it under the microscope, can help make an early diagnosis of MF.  

What are the best treatments for Mycosis Fungoides?
The best treatment for MF depends on the stage of the disease, the patient’s overall health, and the patient’s personal preferences. Treatments can involve one therapy or a combination of therapies. 

Commonly used treatments include:

Skin-directed treatments: These are often used in early stages of the condition and include topical gels or ointments applied directly to the skin. Therapies may include topical steroids, topical chemotherapy, or topical retinoids. Phototherapy (or treatment with ultraviolet-B  light) is first-line treatment for individuals with extensive skin involvement in the early stages of MF or for patients with hypopigmented MF. 

Systemic treatments: These treatments involve the intake of medications by mouth or through an infusion. They are used in individuals with advanced stages of MF or if skin-directed treatments are ineffective. They include: systemic retinoids (like bexarotene), interferon alpha (a type of biologic therapy), chemotherapy, monoclonal antibodies, or histone deacetylase inhibitors.

Radiation therapy: This can be used as either skin-directed treatment (electron beam therapy) or for treating specific tumors. 

Stem cell transplant: This is usually reserved for younger patients with advanced disease who have not responded to other treatments.

It is important to have a discussion with your dermatologist (or skin doctor) about the benefits and side effects of each treatment option to determine the best approach to your individual case. The goal of treatment is not only to control the disease but also maintain a good quality of life.