I am a 54-year old attorney, wife and mother of a wonderful 22-year old daughter, who, unfortunately, lives across the country. In December 2012, I went home after a hot stone massage feeling like a mole on my left shoulder blade was engorged. It felt large and was brushing against my t-shirt. I thought it was inflamed or full of blood because of the massage. I asked my husband to look at it, and he thought it looked oddly large, but it didn’t have irregular margins and it wasn’t dark. It didn’t look anything like the pictures you see of a “bad” mole.
I made an appointment to see my physician, and she thought it looked benign, but I insisted on having it removed. It was removed by a physician’s assistant, who also thought it looked benign. A few days later, I received multiple phone calls on my cell phone as I was driving into work in the morning. When I called back, I was told the mole came back positive for melanoma, that it was very deep and very thick (Clark’s level “at least 4,” and Breslow thickness of ”at least 4.5 mm”), that my mitotic index was 4, and that I would be referred to surgery. The physician’s assistant, who was a jerk when he removed the mole, told me to google what the diagnosis meant. I did and learned that I was in serious trouble. I learned that there was a strong possibility that this would be my last Christmas. I tried to get psychological support from Kaiser, but was told there would be a 2-month wait for me to see a counselor (since I wasn’t going to kill myself in the meantime, it wasn’t a priority).
I couldn’t get in for surgery for several weeks – I was scheduled for mid-January. I had already planned a family vacation in Belize for the first couple of weeks in January, and I went on that trip against doctor’s orders. That was the best decision I could have made, because it kept my mind off the melanoma (somewhat). When I returned, I had a wide excision and SLN mapping and biopsy. After an excruciating 10-day wait for the pathology report to come back, I learned that one of 3 lymph nodes removed was positive for micro-metastases.
About 2 weeks later, I had an axillary node dissection. They removed about 20 more nodes under my left arm, none of which were positive for melanoma. Recovery from the second surgery was painful, and I spent my days of recovery researching lymphadema and adjuvant therapies. I also went to see Kaiser’s only melanoma specialist in Riverside, CA. He was very brusque, because he was going out on a medical leave of his own. He indicated I was technically stage 3a, but more akin to stage 3b because of the high rate of mitosis. He didn’t think I was a good candidate for interferon, and virtually no one at Kaiser opts for interferon anymore. He told me about biochemotherapy, but indicated that he would not be around to administer it (because of his medical leave) and that he didn’t know whether Kaiser would continue to have a biochemo program. He seemed angry at all of my questions and my nervousness, telling me that I had an “excellent chance” of not having a recurrence (about 50/50) and that I should just get on with my life but diligently check for lumps.
Since Kaiser no longer had a melanoma specialist, I went to see the specialist at UCSD on my own dime, to discuss treatment options. Ultimately, I decided against any adjuvant treatment, other than clean living. I have had to do a lot of my own research to get comfortable with the level of follow up care I need. For the first year, I have had CT scans of my trunk every 4 months, and I want that to continue for one more year. I had a brain MRI in March 2013, and I’m going to request another one this year. I started taking a crazy amount of supplements, but have cut way back. I now take curcumin and vitamin D . I learned I have a severe vitamin D deficiency, and I believe (and the specialist at UCSD agrees) that low vitamin D correlates with risk for melanoma. Unfortunately, no amount of prescription vitamin D has helped my numbers – I’m still very deficient.
I have made a lot of positive lifestyle changes since my diagnosis. I’ve improved my diet, and do a lot of strength training and Pilates. I continue to work full time, and make an effort to see my friends more often. I cherish each day and won’t give up without a fight. I believe knowledge is power, so I keep researching. I am coming up on my one year anniversary for NED. My next CT scan is on January 20, 2014, and I’m very nervous.