I have mycosis fungoides (MF). Strange to say that out loud. My story started when I was about 30 (I'm 44 now). I would develop these red scaly patches on my stomach, inner elbows, and behind my knees. The patches would only really show in the colder months in New Jersey, October to like February/March.
I started by seeing my PCP and was told I had cold-induced urticaria. I was advised to take antihistamines and call it a day. Every year, the patches would get worse and worse. I'd have to bundle up more and more, and I started noticing what looked like petechiae by my underwear line; it was faint brown, and I didn't pay it much mind at the time.
When the antihistamines were only making me tired and not helping, I started to reach out to specialists. Winter 2019 was probably the worst year. All the doctors would prescribe me was steroid creams (which burned my skin) and kept telling me the rash in my groin area was "just yeast." I had seen specialists who did extensive bloodwork to see if it was an autoimmune disorder. I had two biopsies (on my lower legs) showing eczema, and I just went with it. No dermatologist, no specialist could tell me what I had. I just kept bundling up. I also had a predominant lymph node in the back of my neck that they took an ultrasound of twice, and I was told it's normal.
Now the rash I mentioned in my groin was starting to appear under my arms, by my armpits, and spread a little to my chest. Again, I was told it was yeast.
Finally, I went to a dermatologist for my yearly skin check, and she saw how red my trunk was. I showed her pictures of how bad the rash could get and what I was told by other doctors. She said, "I don't like that, let's do a scoop biopsy."
So, we did the biopsy in the red part of my trunk on my back. She suspected erythroderma, but it wasn't. She called me on a Saturday while I was at work and said, "You have cutaneous T-cell lymphoma, also known as mycosis fungoides. I need you to reach out to this specialist at PENN who is the only doctor around here that specializes in this type of cancer."
My life literally was running through my head. All I could think about was my son. My mom was killed about two years before my diagnosis, and I couldn't bear my son to be hurt again. I started doing research on this condition (on the right sites!) and knew I had to fight. Luckily, it is an indolent cancer, but I had already been misdiagnosed for over 12 years and had swollen nodes.
I waited a few days to tell my son. I wanted to get the genetic testing to confirm the diagnosis and find out if there was blood involvement. Luckily, there wasn't!
So, I met with Dr. Ellen Kim at Penn whose expertise is MF. She went over everything with me, answered all my questions and fears, and reassured me. I had to start UVB therapy, and "lucky" for me, my insurance at the time wouldn't cover it. So, I had to pay over $500 a week for seven, then 14, then 19 seconds of treatment. I was so discouraged that I couldn't keep paying for said treatment. Somehow, I made it work. Upon trying to appeal for getting a home UVB bed since I needed palliative care for the rest of my life, I had to get old records saying I had eczema because insurance doesn't believe UVB treats MF.
Due to the lymph node involvement, I was staged as 2A. I did a brief course of methotrexate, which made me so sick. Thank goodness that was only for a few weeks.
I still see my medical derm at Penn yearly, and my regular derm six months in between. At my last visit in January, I did have to have another scoop biopsy because one of the possible effects of a UVB bed is melanoma. And with melanoma being in my family and me being fair-skinned, I'm at higher risk on top of the treatment.
October 25 will be two years since my diagnosis. I've accepted that this is my life, and I'm grateful I have a diagnosis instead of people just shrugging their shoulders at me. It took me a long time to fully look in the mirror because even though I had grown accustomed to the rashes, NOW knowing it was cancer, I just wanted it out of my body. I've learned to love my body, my skin, and I've embraced my journey. I've accepted that this is lifelong and my treatment is palliative.
And I am okay with that...
Nikki
mycosis fungoides (MF)
