My story is one of self advocacy.
I was scheduled to have MOHS surgery to remove a squamous growth on my back and would be out of work for a week. I asked my dermatologist if, at the same time, she would remove a pale-skin growth on my lower eyelid. She told me it was not necessary and too close to my eye. I told her it was growing and I was afraid it would grow into my eyelashes. She told me it would be considered cosmetic surgery costing me a lot of money to remove. I pleaded with her to at least biopsy it just in case it was basal or squamous. A week later, to both our shock … it was melanoma- Stage 1B. I went to a top cancer center to have my lower eyelid removed and replaced with skin from my upper eyelid. After surgery my surgeon told me the margins had melanoma in situ and the nuclear medicine never traveled to the sentinel node so nothing else was removed.
During the next several follow up visits to the surgeon, I kept asking him how did he know that the cancer had not spread if the nuclear medicine never traveled to the node. He finally agreed to a PET scan three months later. Even my insurance denied the PET scan since I only had Stage 1B. Good thing I went ahead with it! Two areas in my neck lit up. A needle biopsy was done and it was negative. (Insurance did end up paying for it.) A follow up PET scan, 3 months later, lit up in the same area but only bigger. This time the biopsy found the melanoma. It had metastasized to my neck. A neck dissection, a few weeks later, showed one node with melanoma and … three with thyroid cancer.
I often wonder — what if I had not spoken up? What if I had not asked the questions? Doctors are so busy with so many patients and challenges. I did not present as a typical melanoma patient. The initial growth was atypical- rare. The sentinel node should have been on the side of my face but ended up presenting in my neck- once again – rare.
I am now Stage 3B and I wait. Every six months I have CT scans. When they are negative, I breathe a little easier for a few months. Then a month before the next series, the stress level increases as the next CT time approaches.
There is a lot more to my story but the reason I put this much out there is to encourage people to advocate for yourself. If something just does not seem right— speak up! Ask questions- your life can depend on it!