I Thought It Was Just a Keloid...
This is the beginning of the story of my diagnosis of and treatment for DFSP, a rare skin cancer.
It all started with a tiny scar on my lower right abdomen that I acquired from falling off a bike when I was 10 years old. When I got pregnant with my first daughter, the scar “grew” into what appeared to be a small keloid. I figured it just got bigger because my stomach got bigger with pregnancy, so I shrugged it off. The “keloid” grew again when I got pregnant with my second daughter 2 years later. No big deal, I thought, my stomach grows and so does the keloid.
My keloid turned out to be a rare skin cancer: DFSP
Over the next few years, I lost 60 pounds and gained back 25, so the size of my abdomen fluctuated. However, the “keloid” continued to slowly grow without me noticing. My husband looked at me while I was dressed in a swimsuit when we were on a recent vacation, and he said “that thing on your stomach is bigger, I think you need to go get it checked out.” I was in denial, but he was right. The "keloid" turned out to be dermatofibrosarcoma protuberans or DFSP.
My first visit with the dermatologist
On Tuesday, February 23, 2021, I had my first ever appointment to see a dermatologist, and I explained the entire 7-year scenario, detailing why I hadn’t gotten it checked out sooner. She looked at it, touched it, cocked her head to the side, moved it side-to-side and up-and-down, and then said to me “it could be a keloid, but I bet my next paycheck it’s DFSP.”
What is DFSP?
She explained to me that DFSP, an abbreviation for dermatofibrosarcoma protuberans, is a very rare type of skin cancer. It affects just 1 in 1 million individuals, and it primarily affects the middle layers of the skin. DFSP is locally aggressive and rarely metastatic, but it “grows under the skin like roots of a tree”.
I was in shock
I was in shock, and to be honest, mostly disappointed in myself. How could I, a physician assistant, ignore myself for so long to the point where I missed a potentially fatal diagnosis? The dermatologist assured me that many people who perform self-exams mistake the tumor for a keloid because it is flesh-colored, painless, slow-growing, and arises from a scar. DFSP also usually grows during pregnancy and it is more common in African American people.
The dermatologist got right to work
My new dermatologist didn’t waste any time. She took a biopsy that day and said she should have the results within a week. Since she took a biopsy and put 3 sutures in my “keloid”, I could no longer go to the gym since that was my plan immediately following the appointment.
A new chapter of my life
My life was forever changed a week later when she called to give me the results of the biopsy: the cells indeed showed up as DFSP. She referred me to a surgical dermatologist, who would now be responsible for excising the tumor, but I would need to follow up with her every few months for the next couple of years. My journey with skin cancer was just beginning.
Have you ever heard of DFSP?
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