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RUTH NASRULLAH Mycosis Fungoides: The Unknown Cancer Imagine discovering that the rash you’ve had for a decade isn’t psoriasis at all, but a very rare cancer that the first two doctors you saw couldn’t even diagnose. You’ve had cancer for 10 or 15 years without knowing it. You are now faced with several difficult and uncertain treatment options – ultraviolet light therapy; coating your entire body with a medicated paste; or enduring the painful and sickening side effects of chemo or radiation therapy. Worse yet, no one has ever heard of your disease, including your insurance carrier. Such is often the situation of patients with cutaneous T-cell lymphoma, or CTCL, an unusual cancer of the lymphatic system that manifests in the skin. You don't have anyone to talk to who knows what you're going through. Nobody you know has ever heard of this disease and you feel alone and isolated. The words of Judy Jones, founder of the Mycosis Fungoides Foundation, ring true for those diagnosed with CTCL. If one shares a diagnosis of, say, breast or prostate cancer, the listener nods in sympathy, perhaps mentioning an uncle or grandmother who had it. On the other hand, a person who announces he has CTCL, or its most common form, the odd-sounding mycosis fungoides, is likely to be greeted with a confused stare. Mycosis fungoides (MF) is an indolent, or slow-progressing, cancer that primarily affects the skin. It progresses to the lymph nodes and internal organs in about 10% of cases. It is the most common type of CTCL, a term which encompasses other non-Hodgkin’s lymphomas such as lymphomatoid papulosis; lymphomatoid granulomatosis; peripheral T-cell lymphoma; and Sezary syndrome, the leukemic form of the disease. Although MF causes a variety of rashy patches and lesions on the skin, it is not a skin cancer. It is in fact a lymphoma, or cancer of the lymphatic system, the collection of vein-like tubes that run throughout the body and assist in the fight against infection. Because the T-cells of the lymphatic system which are affected by this disease are naturally attracted to the skin, the symptoms appear there. There is no cure, but it can be treated by a variety of means and after treatment often does not reappear for years at a time. The hard part is getting diagnosed. MF is rare. It constitutes approximately 2% of new lymphoma cases each year, and current estimates show only a total of 23,000 cases in the US and Canada. To get some idea of the difficulty in obtaining a diagnosis, rent a somewhat obscure Italian film by director Nanni Moretti called “Caro Diario.” In the final section of this film, the director, playing himself, is stricken with a bout of intense, incurable itching all over. He spends the better part of a year going from doctor to doctor without relief, until he finally encounters a dermatologist familiar with CTCL who makes the diagnosis. (Moretti underwent chemotherapy which put the disease in remission.) The unrelenting itching depicted in the movie is sometimes a symptom of MF, although many patients are spared this. The frustration at being unable to obtain a correct diagnosis is something numerous MF patients have struggled with. Because the patches of early-stage MF resemble eczema or psoriasis, many patients are misdiagnosed as having these conditions. A patient can often go for years before

Mycosis fungoides: The unknown cancer

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