Mild cutaneous lymphoma: any experience with this?
February 1, 2012 5:08 PM   Subscribe

A dermatologist confirmed today, based on the results of two biopsies, that I probably have mycosis fungoides (a mild cutaneous lymphoma). It's patch-stage, and he says it's the mildest case he's ever seen, and he's referred me to a specialist. I understand (based on a weekend of nail-biting research and his confirmation of the research) that it's usually not a big deal to have this, but I'd like to hear from people who have experience with it.

My (now-ex-) dermatologist is away until February 6, and in his absence his office faxed me the results of two recent biopsies from a strange cluster of things on my leg that popped up in December and looked, to my layperson's eye, a bit like eczema. When the fax arrived, the results for one biopsy said "mild superficial dermal cd4+ t-cell lymphocytic infiltrate with focal epidermotropism, suspicious for patch stage mycosis fungoides" and the results for the other said "mild superficial dermal cd4+ t-cell lymphocytic infiltrate with focal epidermotropism and parakeratosis, suspicious for patch stage mycosis fungoides." Research revealed that mycosis fungoides is a rare form of cutaneous lymphoma.

When I called back for more information, the receptionist/faxer said that this was why they didn't like to provide patients with results in the doctor's absence, that there was no physician for me to consult in the doctor's absence, and that I should call him upon his return (on February 6) if I had any questions. All of this happened just before 5 p.m. on Friday. [/kvetching]

Obviously I called a new dermatologist (at a group practice where I see other specialists) first thing Monday morning; on hearing about the biopsy results, his office fit me in today.

He confirmed, based on the results and clinical inspection, that it is most likely mycosis fungoides, and he also confirmed what I'd read over the weekend: that the patch-stage type I have usually doesn't end up progressing into anything more serious (though the patches themselves can get worse) or affecting life expectancy in any significant way. He says it's a great sign that it's been fading just due to the over-the-counter cortisone creams I've been applying. And he gave me the names of some specialists, so I'll be seeing one as soon as I can.

Any advice, anyone?
posted by maud to Health & Fitness (1 answer total) 1 user marked this as a favorite
Response by poster: In case anyone comes looking for advice here, I'll just say that I did in fact have Mycosis Fungoides, a form of cutaneous t-cell lymphoma (CTCL), that I sought treatment from Sloan Kettering, that the treatment involved a steroid cream, and that I am already in complete remission. The disease could recur at any time, but it also might never recur.
posted by maud at 8:00 AM on April 18, 2012

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