Article previously published in the Cutaneous Lymphoma Foundation's Forum Winter 2012 newsletter.
Much has changed since I learned in my late twenties what caused the red, scaly patches that had appeared on my hip, stomach and breasts for about five years. It wasn’t eczema, psoriasis or tinea, as I and several dermatologists assumed. It’s mycosis fungoides, a 1983 biopsy finally revealed.
That was before Google, before medical websites, before the Cutaneous Lymphoma Foundation and before I had two children. But one important thing hasn’t changed: I remain at Stage 1A of a disease that’s far less scary than it seemed 28 years ago.
The dermatologist who took several biopsy samples, a retired Army doctor recommended by a fellow teacher in Washington, D.C., was vaguely familiar with the form of cutaneous T-cell lymphoma (CTCL). When I asked him to simplify medical jargon such as “atypical lymphoid infiltrate,” the reply was stark: “It’s kind of like saying you have a little cancer.” Equally dismaying was his frank response to a question about what to expect: “Nobody really knows.”
After confirming the diagnosis at The Johns Hopkins Hospital in Baltimore, I returned to my Washington doctor for UVB phototherapy – though he simply had an old lamp with an ultraviolet bulb that also was used for acne treatment. At his suggestion, I soon found an office with a full-body light box.
Experiences with a series of dermatologists during the 1980s and 1990s showed uncertainty about how to treat CTCL, a term introduced at a 1979 National Cancer Institute workshop. Even at The George Washington University Medical Center, burns resulted from light machines that weren’t calibrated. Things seemed nebulous and foggy. I felt terribly alone.
With relatively limited attention paid to this “orphan disease” then, I watched online for news about clinical trials, other research and treatment options. I wondered whether to see an oncologist or have blood screening. I learned the meaning of medical terms, navigating a new language and unfamiliar terrain – much like the foreign-born adults in my English classes at Fairfax County Public Schools in northern Virginia.
In the late 1990s, I found the CTCL-MF Listserv that Judy Jones had recently helped start. That led me to her new Cutaneous Lymphoma Foundation, which promoted the online discussion community. It was like an epiphany. Being able to read what other people were going through was so wonderful -- just what I had been looking for. Judy was such an inspiration and called me “a poster child for CTCL” when she encouraged me to post on the CTCL-MF Listserv.
I was definitely the veteran and was glad to share what I knew. I still try to offer reassurance and perspective when I see posts from someone who sounds depressed or is in the early freaking-out phase.
Beach and poolside therapy
Through the years, I’ve been treated by about eight dermatologists -- mainly receiving UVB phototherapy three times a week. Our family dutifully took post-winter trips south so I could “roast in the sun,” as we joked, and wear skimpier swimsuits than I was comfortable with back home. These formal and informal ultraviolet ray treatments worked well, and I sometimes went as long as three years with no outbreak.
After receiving care from Dr. Mervyn Elgart, former dermatology chairman at George Washington University, I now see Dr. Carol McNeely, one of his private practice associates in the capital district. We switched in 2007 from light therapy to Clobetasol, a prescription ointment or cream that didn’t exist in 1983.
The UVB regimen resumed in 2009 after two atypically large spots of discolored skin appeared on my stomach and nearby. They disappeared with the phototherapy, and Clobetasol currently is my only treatment. I see Dr. McNeely twice a year or when I have a flare-up.
Time to speak up
This disease never defined me or restricted what I do. But it has been a very bizarre thing to live with for three decades. It wasn’t something I discussed because it was too weird to explain, too hard to describe. But people would ask about my tan and where we had vacationed, and it did seem like I had a secret life.
Now, after living normally for this long and raising a daughter who’s 27 and a son who’s 23, I’m becoming more vocal. That’s partly why I joined the Cutaneous Lymphoma Foundation Board of Directors in October 2011, a step encouraged by Claudia Day, a patient and former board member, when we reunited six months earlier at a Cutaneous Lymphoma Foundation patient education forum in Virginia. We originally met at a 2003 lunch in Washington organized by Judy.
This is my disease and my time to become more vocal. At age 57, nearly 30 years after being diagnosed, I want to support work to reduce or eliminate the number of people who spend years being misdiagnosed. With current medical advances and the Internet presence of organizations such as ours, there’s no excuse for dermatologists to be unfamiliar with CTCL.
I’m thrilled to be part of a Foundation that effectively educates and supports doctors as well as patients.
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.