You Know Your Skin: Advocate for Yourself
A moped accident removed my first mole the weekend of my high school graduation. My left shoulder hit the rock driveway blood running down my arm. I realized the large dark mole that had annoyed me since I could remember was gone. Bandaged and healing it went away only to start to grow back within several months. This was my first trip to the dermatologist who removed and tested the margins. Another surgery since it was severe atypical level. 20 years later, I still have the scar.
At that time my dermatologist diagnosed my skin as having A LOT of atypical moles (dysplastic nevi). Basically my torso and arms are covered. On my maternal side, my grandpa was diagnosed with melanoma late in life and my aunt had melanoma in her 40’s. I ignored the dermatologist’s request for 6-month spot checks until I was 25 when I started seeing a dermatologist every 6-months to a year. By 34, I had three outpatient surgeries that removed moderate to severe moles on my back. I was diligent with going to my dermatologist and pointed out my back right shoulder mole every appointment. The response was always if I remove it, they would not cover it for insurance. The dermatologist was not concerned and it would be a cosmetic removal.
At 36, I was diagnosed with melanoma with that same mole I had requested to be removed. The phone call came on July 3, 2017. Earlier that year in March, I had a tummy tuck and mommy make-over. Having had twins and then a singleton within a year (yes, they are 11 months apart), ten years prior I was left with a hernia that no workout could get rid of. I finally had the surgery. My surgeon while marking my body for the surgery pointed out several moles including my back right shoulder and asked if he could remove them. He asked if I saw a dermatologist regularly. I said yes please remove as my dermatologist continues to say it’s cosmetic. Finally this nasty mole that had been an ugly eye sore was gone. The only problem, this plastic surgeon didn’t send them for testing and only scraped them off. There were no clean margins as they say. So I had no idea I was living with cancer.
Fast forward to June at my regular dermatology 6month appointment. I pointed out that my back right shoulder mole was growing back. I knew the signs as it was the same that had happened when I was 18. Finally, my dermatologist decided it was time to biopsy the area. Results came back on July 3, 2017. I received a phone call at 4:00 that day that went to voicemail as I was on the other line. They left a message to call back. I called back and they said the nurse was not available. She called back another time, again I was on a work phone call. She left a message that I needed to follow-up with plastic surgery and oncology. Can you imagine the shock and horror of getting a voicemail to call Oncology a department I did not ever see and is associated with cancer? I called Oncology who said I needed to talk to the nurse in Dermatology first. They wouldn’t tell me anything. No one answering at Dermatology. I got smart and called Plastic Surgery where they always performed margin removal and told them I needed to schedule my surgery. She then told me I also had to schedule my Oncology appointment and verified I had Melanoma – she didn’t realize I didn’t know yet.
I should have realized at this point in time I was in for a long road of continued screw-ups. I did make an immediate decision that I was done with my current dermatologist. I never saw him again. My surgery was scheduled for Wednesday, the first week in August. I met with the plastic surgeon and set the date. His concern was extensive based on my age and not knowing how deep the cancer truly was. Now the waiting game till I could get it removed. In the meantime, 2 weeks after my diagnosis I lost one of my best friends to ovarian cancer. July 2017 was a devastating month. I was trying to keep busy and reading everything I could get my hands on about melanoma. I had so many traits against me: family history, tanning & sun exposure at a young age including detassling corn in the hot sun all through high school, hundreds of moles and history of atypical moles.
Wednesday the day of surgery finally came, we arrived and got set-up in the pre-op room. IVs were inserted and just before they were getting ready to put me under, the doctor came in and said he reviewed my charts again. He missed the depth of my melanoma and needed me to get more testing done. Surgery was postponed to Friday at the hospital where I would first go to Nuclear Medicine to pinpoint lymph nodes that if the cancer had spread would be on the path first to receive the cancer cells. Nuclear Medicine would mark in my arm pit where the lymph node removal would occur during surgery and it would be tested during surgery. Surgery would be about 5 hours and I would wake up to find out if it had spread. I remember trying to hold it together and get dressed. Walking out to the parking lot and breaking down.
The longest 48 hours of my life. It was full of thinking about what happens to my kids if it spread, what are my chances of surviving, what treatment options would there be, all the fear induced thoughts you can imagine.
Surgery came – 7 hours later I was cancer free. My lymph nodes were without any cancer cells. I awoke to the best news I could hear. Recovery took weeks, as there were about 75 stitches in the shape of a candy cane on my back right shoulder. Now started the healing and seeing my new dermatologist PA and Dr. at a different hospital. Within the next 4 months, I had six severe moles removed with biopsies followed by outpatient surgeries. I was about 2 weeks without stitches by December. My Dr. decided it was time for a break so I could mentally recover. Every time there was a biopsy, it was a waiting game – do I have cancer? Has it spread? The fear took hold of every thought.
Over the next few years, I would continue to have biopsies with severe or moderate moles followed by outpatient surgery. In total, I have had 16 outpatient surgeries since 2017 for moderate and severe moles. My skin checks are every 3-6 months. There is not a day that goes by that I do not think about “what if”. Daily skin checks. Umbrellas, hats, long sleeves, sunscreen, and cover-ups. Planning for my son’s baseball games wondering if there will be shade available. Checking my Apple watch for the UV index before stepping out of the house. I live with this new reality every day.
My new Dermatology team listens. They biopsy what I want them to and take what they think needs gone. We are a team that is treating my skin trying to stay ahead of another cancer diagnosis. I just had my 40th birthday – I spent the day after having an outpatient surgery for a spot on my abdomen. Not the way I imagined my 40th, but I am also thankful it is one less mole to worry about.
It is so important to advocate for yourself. If I had, the melanoma most likely would have been removed at the severe stage prior to cancer. Do not rely on doctors that rush you in and out the door. Do not rely on doctors that do not listen to your concerns. Find professionals that listen to you. Find professionals that look at your chart and take pictures. Find professionals that care about what they are doing and not looking at you as just another insurance claim.