I have always considered myself a healthy person, I exercise regularly and eat fairly healthy. Skin cancer wasn’t even on my radar for health concerns. There were a few sunburns in my teens and twenties, but I wasn’t someone who sun-tanned and I had applied sunscreen daily on my face since my mid-twenties.
In the fall of 2016, I scheduled a skin cancer check because it had been three or four years since my last visit. About two weeks before my already scheduled appointment I noticed a red “pimple” on my forehead. It was red and tender like a pimple but did not respond to any of my regular acne treatments. At my appointment I asked about it and they decided to do a shave biopsy. I wasn’t too concerned until about 5 days after the biopsy when I took off the band-aid and saw a donut shaped ring forming at the edge of the wound. The doctor’s office had not yet called me with the results of the biopsy, but now I was really nervous. I called and spoke to a nurse who stated, “It’s most likely squamous cell carcinoma but we need to wait for the biopsy,”
Wait. And wait. Waiting has been a big part of my skin cancer story. As I waited my tumor grew. Protruding off my forehead was an angry red volcano with a yellow crater in the center. It was still smaller than a dime, but much bigger than the original red bump. I was nervous and worried.
Finally almost 10 days after the shave biopsy I hear the news that it is squamous cell carcinoma. I’m beyond relieved when they schedule me for Moh’s surgery four days later. It took two passes of Moh’s surgery to get clear margins and I learn my tumor was called a keratoacanthoma. I was grateful to have it removed and I was ready to put it behind me (other than more vigilance with sun protection).
Just the beginning
However, healing from the surgery seemed slow and uneven, I ended up going in for several extra checkups in addition to the scheduled ones. The lower part of my wound area didn’t look right, it was a red swollen area instead of healthy pink scar tissue. The doctor tried a couple of revisions over several weeks, removing excess skin and etc. On a visit approximately 9 weeks after the Moh’s surgery my doctor tried a cortisone injection to reduce the swelling. Four days later my DuoDERM dressing came off and my heart fell to the floor. An ugly donut-shaped keratoacanthoma was back, bigger than the one that had been removed 10 weeks earlier.
My doctor saw me right away. Her opinion was that it was a rare type of keratoacanthoma that grows in the margins of scar tissue. My doctor said she had never seen this before only read about it in medical journals.
A shave biopsy was done. And the waiting began again. It was a much more scary wait and this time there were new layer of anxieties. Did I really have a rare type? If so, I wanted an expert for my care. Where should I go? How long would I wait to get an appointment? How big was this tumor going to grow before I could get it removed? I decided to seek care at Mayo Clinic as I had been there before for an unrelated issue. As soon the biopsy came back I was able start the process of scheduling an appointment.
While I waited for the biopsy results and then for my appointment with new doctors, the tumor grew quite rapidly. Soon the standard band-aid wasn’t big enough, I went to the one inch wide bandage and then a week later to a knee sized bandage. Horrific is not too strong of a word to describe the ugly, painful thing growing on my forehead. I would describe it as zombie flesh, a spongy, raw, bleeding circular growth protruding from my head. I could no longer sleep on that side of my body and the tumor would throb with pain multiple times per day. I also had swelling down the side of my face into my ear and upper jaw.
Three weeks is a long time
Fortunately I was able to get a Moh’s surgery scheduled at Mayo Clinic exactly three weeks after discovering the cancer was back. It seems pretty quick looking back, but at the time the wait was scary and long. In three weeks the tumor had grown from the size of a dime to about an inch in diameter!
It took three passes of the Moh’s surgery to get it all. The tumor had grown under the nerve that controls my eyebrow and that nerve was removed during the surgery. I was grateful that I did not lose part of my eyebrow also as the tumor had grown quite close to it. After the surgery was completed, the hole in my skin was the size of an egg. I was then scheduled for surgery under anesthesia the next day to close the wound, permanently fix my eyebrow to a neutral position, and also do a lymph node biopsy. My husband and I went to our hotel that night numb with shock. I hadn’t expected to need a surgery under general anesthesia and I hadn’t expected a lymph node biopsy or losing the nerve that controls my eyebrow. The whole experience felt unreal.
After the surgery my face was swollen and bruised. I had stitches, dye stains on my skin from the lymph node biopsy, and a portion of the wound had been left open to heal by secondary intention as the wound opening was too large to close completely. I looked like I had been in a nasty bar fight, but as my sweet niece reminded me, “you won the fight!” Fortunately the biopsies came back with good news. The tumor did not have nerve involvement and the lymph node biopsies came back negative for cancer. The doctors involved in my care as well as a consulting radiologist all agreed that further treatment (radiation) was not needed.
Sharing my story
I wanted to share my story as I have not heard of another one like it and hope my story can help someone else. In spite of all I went through, I feel fortunate. I am so grateful for the support of my husband and kids, other family members and friends. There has not been another skin cancer recurrence so it appears I do not have the rare type of keratoacanthoma. As the months pass the wound is less noticeable and can be covered with makeup and my hair. My goal to make myself healthier than ever. I am working to reduce my stress levels through prayer, meditation and yoga and improve my health through better eating habits and continued exercising. Currently, I see my doctors every 3 months for follow-ups and I monitor my own skin for changes as well. I have much to be thankful for.