What "They" Don't Tell you About Skin Cancer Surgery

in February 2021, I was diagnosed with dermatofibrosarcoma protuberans. DFSP is a rare form of skin cancer, considered a sarcoma, that affects 1 in 1 million people. The golf ball-sized tumor was on my right lower abdomen. Since my diagnosis, I have undergone two surgeries for skin cancer removal.

My first surgery for skin cancer removal

The first surgery was a wide excision of the visible tumor plus an area approximately 1-centimeter circumference around the tumor. This took about 2 hours, and it was done by a surgical dermatologist under local anesthesia in the outpatient office. Applying the local anesthesia took longer than the actual “surgery”, but the hole the surgeon cut out of me was the size of a grapefruit and when he closed my wound, the length of the sutures was more than the length of both my c-section scars.

He was confident he got it all

The surgical dermatologist was confident since he took so much tissue, that he got it all. Unfortunately, he called back a week later stating that the pathology report showed there were still more cancerous cells left, and he would need to refer me to a surgical oncologist who would have to perform a second surgery for skin cancer removal and cut out more tissue.

My second skin cancer removal surgery

For surgery number two, scheduled 6 weeks after the initial surgery, I had to be put to sleep under general anesthesia. Despite this, it was considered a “same day” procedure since it didn’t require an overnight hospital stay. This new wound had 27 staples, a JP drain, and was about double the size of my c-section scars. To be honest, it appears as if I had a tummy tuck, but only on one side of my abdomen.

I wasn't prepared for this

There are so many things I was not prepared to experience during these surgeries to remove skin cancer. Like I previously alluded to, I had c-sections to deliver both of my daughters 2 years apart. The pain from both of these recent surgeries far exceeded c-section pain. It literally felt as if my insides were on fire for an entire week post-op!

The pain was difficult to bear

I usually hate taking pain medications, but I needed them every 6 hours as prescribed. Even after the initial “fire” pain went away, the JP drain caused its own pain, especially during showers. No one told me that I would need assistance with showering until the JP drain was removed. And no one told me that walking around my bedroom would take so much energy and cause back pain from walking with a lean.

Mobility and weight gain

Aside from the pain, no one told me that lifting my right leg under the wound would be near impossible, and I would need assistance transferring in and out of the bed, as well as in and out of the car, for two weeks post-op. I haven’t been able to exercise since I had the initial biopsy 3 months ago, and I have been eating my feelings since I have Generalized Anxiety Disorder (emotional eating is one of my poor coping strategies).

What I'm left with

As a result, I have gained 20 pounds, which I find odd because we usually hear of people losing weight during cancer treatment. Although I have great body image and self-esteem, I still worry that my sudden and quick weight gain will cause lingering health problems in the future. After having my staples removed yesterday, I am left with a huge scar, but I have to remember that the scar tells a story of how cancer tried to kill me and did not succeed. I am also left with lingering skin sensitivity, particularly at the top of my wound, and muscle soreness under the wound. I am hoping that continues to improve over time during my recovery process.

How do you prepare for skin cancer surgery?