Living With a Mystery Disease: One Woman’s Story

by Annette Boyle

October 16, 2017

By Annette M. Boyle

BIRMINGHAM, MI — At 31, Susan Thornton developed an itchy rash around her waist. Based on its appearance, the five dermatologists she saw over the next year diagnosed it as psoriasis, eczema and several other common skin conditions, but the skin creams and medications prescribed had no effect on the rash or its itch.

Luckily, she lived in Philadelphia and eventually found her way to a community dermatologist who thought her rash looked familiar. A biopsy confirmed the suspicion of a rare form of cancer: mycosis fungoides (MF).

Mycosis fungoides is a variety of cutaneous T-cell lymphoma (CTCL). In addition to mycosis fungoides, CTCL includes Sezary syndrome, cutaneous CD30-expressing anaplastic large cell lymphoma, panniculitis-like T-cell lymphoma, CD8-expressing aggressive epidermotropic T-cell lymphoma and gamma-delta T-cell lymphoma, which together account for about 4% of all non-Hodgkin lymphomas.

While it usually presents as a persistent rash in a sun-protected area that does not respond to treatment, it can also appear in darker-skinned patients as white patches and be mistaken for vitiligo. Because the changes in the skin occur slowly in many patients, it often takes the better part of a decade to diagnose. Physicians in the VA are more likely to see any type of CTCL than most other clinicians as 5%-10% of all new cases are diagnosed at the VA.  

The typical cutaneous lymphoma patient is an African-American man over the age of 50 and frequently a veteran because of a presumptive connection between the disease and Agent Orange, Thornton noted. She was a young white woman. “Even if you were somewhat familiar with the disease, why would you even think it was what I had?”

Thornton is now the chief executive officer of the Cutaneous Lymphoma Foundation. “Patients are still misdiagnosed all the time. It’s a rare disease and not top-of-mind for a community dermatologist,” she told U.S. Medicine. “In mycosis fungoides, particularly in the early stage, when patients have just a small patch, even the best pathologist’s eye and tools do not provide conclusive diagnosis. Even looking at a biopsy requires a very-well-trained pathologist who has seen it and understands the patient’s history to make an educated determination that it’s a variant of cutaneous lymphoma.”

Many patients take some time to understand their diagnosis. “It doesn’t have a typical dermatological path or cancer path,” according to Thornton. “For someone who thinks they have eczema, finding out they have a rare form of cancer can put them over the edge. If they connect with the Cutaneous Lymphoma Foundation, they find they are not the only person who has this rare disease.”

For Thornton, the diagnosis was a shock, but the progression of the disease was even more alarming. When detected early, mycosis fungoides remains endolent, sometimes for decades, in many patients.

“I ended up in the small percentage who had progressive disease,” she said. Within six years, “my disease bloomed into tumor stage, and I was headed for a stem cell transplant.” Before she went down that path, however, Thornton’s physician, one of the premier specialists in the disease, referred her to a radiation oncologist for treatment customized to her condition. “A combination of radiology and interferon injections worked well for me. I did that pattern for 10 years to keep the disease under control and have not needed anything more than topical steroids since 2010,” she explained.

Thornton recommends that patients diagnosed with cutaneous lymphoma continue to be followed by an expert, even if they can be treated locally, to have “backup from someone who sees the disease all the time and knows what options are out there.”

CLF supports patients and researchers who study the disease. “We’re so fortunate to have a very collaborative, multidisciplinary group of researchers worldwide who share research and updates. To study and treat cutaneous lymphoma, you have cross clinical disciplines and include hematology oncologists, dermatology oncologists, hematopathologists and dermapathologists.”


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