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Mycosis fungoides is the most common subtype of cutaneous T cell lymphoma, a rare blood cancer that affects the skin.

Pronounced ¡°my-KOH-sis fun-GOY-dees,¡± it usually appears as a rash. It¡¯s often mistaken for eczema or psoriasis, and is frequently misdiagnosed. So, how would you know if you have this disease? How serious is it? And, is mycosis fungoides curable?

We went to dermatologist?,?section chief of the Cutaneous T Cell Lymphoma Clinic, for answers. Here¡¯s what she shared.

How serious is mycosis fungoides?

Most people diagnosed with this lymphoma have early-stage disease. That means only the skin is involved, and they don¡¯t have large areas of skin involvement. So, it¡¯s very treatable, and their prognosis is good. About 88% of those people are still alive five years after diagnosis.

Mycosis fungoides is also considered an indolent cancer, meaning it moves pretty slowly. So, most people with early-stage disease won¡¯t die from mycosis fungoides, either.

Still, I don¡¯t want to overgeneralize here or understate the risk. Mycosis fungoides can be very serious if it becomes advanced. So, it¡¯s important to seek treatment at a place like UT MD Anderson, which has doctors who specialize in this disease. 

What are the first signs of mycosis fungoides?

Usually, it¡¯s a rash that looks flaky, like eczema, or scaly, like psoriasis, so it often gets mistaken for one of those conditions. 

But unlike those skin conditions, it tends to develop in ¡°double-hidden¡± areas first. That means places that would normally be covered not only by pants or a T-shirt, but also by undergarments or a bathing suit. The groin and underneath a bra strap are two of the most common places to find it.

How is mycosis fungoides typically diagnosed?

Sometimes, people will get a skin biopsy at their dermatologist¡¯s office and learn they have cutaneous T cell lymphoma that way. But many people get referred to us because their doctors are concerned about possible cutaneous lymphoma and they need our expertise.

Often, someone will have a history of a long-standing rash that has not responded well to standard treatment. Over-the-counter creams and prescription medications either were not helpful or just made it worse.

So, is a biopsy used to make a definitive mycosis fungoides diagnosis?

Actually, no. A biopsy is just one part of the equation. The other part is how the disease appears on the skin, which is known as the clinical pathology correlation. 

A biopsy can tell us if something is cutaneous T cell lymphoma. But sometimes, it can¡¯t tell you which subtype. Mycosis fungoides is the most common subtype, but there are more than 20 subtypes of cutaneous T cell lymphoma. And each one looks different under a microscope and on the skin. So, you have to put the clinical presentation and biopsy findings together to get the whole picture.

The treatments for each subtype can vary a great deal, too. Part of our challenge is to make sure we diagnose the right subtype. We wouldn¡¯t want to treat a mild disease too assertively or an aggressive disease too gently.

Fortunately, we have specialized tools here at UT MD Anderson that can help us pin down the subtypes. We also have a tumor board of specialists that meets every other week to discuss complex or ambiguous cases. 

How is mycosis fungoides treated?

Treatment is usually skin-directed at first. So, we¡¯ll start with topical versions of chemotherapy, steroids and even immunotherapy that are applied directly to the skin. We may also use ultraviolet phototherapy and radiation therapy.  

If the disease spreads to the blood, lymph nodes or other sites, we¡¯ll need to start looking at systemic therapies, such as oral or IV chemotherapy, injectable immunotherapy and monoclonal antibodies.

Cutaneous lymphoma is a blood cancer that stems from the immune system. So, it is not typically treated with surgery.

How does mycosis fungoides differ from S¨¦zary syndrome?

S¨¦zary syndrome looks like a full-body sunburn or an allergic reaction to a drug. Your whole body is covered in a red rash. S¨¦zary syndrome patients also have a high number of lymphoma cells in their blood.

Mycosis fungoides is usually more limited in scope, with just a few areas of rash on the skin. 

So, is mycosis fungoides considered a skin cancer or a blood cancer?

It¡¯s a type of blood cancer that shows up on the skin. 

The lesions are caused by a type of white blood cell called lymphocytes, which are formed in the bone marrow. The affected cells just go up to the skin and kind of park there. 

Is mycosis fungoides curable?

We don¡¯t have a cure for mycosis fungoides right now because we don¡¯t have a way to stop production of the malignant cell type using standard therapies without completely wiping out the bone marrow. It¡¯s potentially curable with an allogeneic stem cell transplant, but we only consider that option if a patient has advanced-stage disease and qualifies for a transplant.

Stem cell transplants can have side effects. And, not every patient who gets one will be cured of mycosis fungoides ¡ª only about half will. So, it¡¯s not without risks. 

Is mycosis fungoides genetic?

There have been a few instances in which multiple members of the same family have developed mycosis fungoides. But so far, we haven¡¯t found a definite genetic link. 

So, what causes mycosis fungoides?

That¡¯s very hard to say. Many things could stimulate your white cells to overproduce in this way, including viruses and even medications that you¡¯ve been taking for years. Sometimes, if a patient has just started taking a new medication, we¡¯ll ask them to stop and it goes away. But it¡¯s different for everyone. 

A history of autoimmune disease can also make you more prone to developing mycosis fungoides. We¡¯re looking into potential environmental triggers, too, such as exposure to chemicals in fire-retardant uniforms or chlorine compounds in industrial settings. It might be a combination of genetic predisposition and environmental triggers.

Why is it important to see a specialist for mycosis fungoides?

Mycosis fungoides is a very rare disease, so seeking treatment for it at a place like UT MD Anderson ¡ª where there is a multidisciplinary team of specialists evaluating patients ¡ª is critical to success. This is especially true if the diagnosis is unclear or if there is less than optimal response to treatment. 

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