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?
Have you ever been diagnosed with melanoma?