When you were first diagnosed, what was your doctor's initial advice? Treatments, behavioral, referral.
What were the good things you learned at diagnosis? What worried you most about the diagnosis?
When you were first diagnosed, what was your doctor's initial advice? Treatments, behavioral, referral.
What were the good things you learned at diagnosis? What worried you most about the diagnosis?
The initial advice from my family doctor - she tired to reassure me. She looked over the results and tried to tell me that we had caught it earlier and that was what was most important. She did not go over the biopsie report so I left feeling uneducated and sacred. I went back two days later this time I took a print out of my results which ment I was better able to educate myself about what the results numbers. The miotic rate was positive while the margins and depth were concerning. The unknown- could it be in my lymph nodes or other parts of my body was what I worried about. During the wait time, I caught an awful bronchial cough and had to go to the after hours clinic. Here I met with a wonderful Docitor told her what was going on. She too indicated that it was early and went over the results telling me, as I had learned through my research, what on the report was positive and what was more concerning. This actually made me feel better.
I next met with my oncologic surgeon who was the most helpful, approachable and reassuring of all. She laid out the plan (WLE and lymph nodes). Having a plan helped me feel better.
Now I just worry every time the sun comes out. . I worry at each whole body scan and I worry when I look at the little freckle bodies of my little girls. I also try not to worry and live my life to the fullest.
My oncologist said some terrifying words to me when I was initially diagnosed. He said that I should 'get my affairs in order.' I couldn't even comprehend what that meant. He also asked if I would like to know my prognosis and I very quickly answered no. I said that would be based on statistics and I was not a statistic. I didn't want to be told 'you have x number of months to live.' Years later I asked him what he would have said if I'd have allowed him to give me that prognosis. He said, "I'd have told you that you had 6-9 months."
To answer this I suppose I should point out that there were really two points in the early stages of my diagnosis where I received some advice from doctors.
The first was when my dermatologist called me to let me know that the "mosquito bite" on my head was actually melanoma. He referred me to BC Cancer and to a plastic surgeon to have the lesion fully removed for further review, and then quickly absolved himself of any further responsibility towards me. Frankly, I learned very little at this diagnosis, just that we had to deal with this quickly.
The second was the review of my situation (following the complete excision of the original tumor and its margins) with a BC Cancer Agency skin specialist. His advice was to wait on doing anything until some symptoms present themselves. This didn't sit well with us, and so we began a search for another doctor and hopefully better advice. What worried us most is that I was already starting to feel a little "light headed" quite often, which at the time I emotionally attributed to the recent surgeries on the top of my head. This accelerated our search, and we were fortunate to find a good oncologist quickly and in our neighborhood. He put me on a regimen of regular scans immediately, and he was calming and knowledgeable, and made us feel like we were now in good hands. What worried us now was not knowing what the future would hold for us and the feeling of having to live with this as a part of our journey.
The dermatologist said we caught it early enough and I shouldn't be too worried, "just to cover up". He said all of the melanoma was removed in the biopsy, but was doing a wide excision just to be safe. I was too shocked at everything happening that I didn't ask about details pertaining to my biopsy report. I feel like he was very laid back about the whole thing, which concerned me. I have since changed dermatologists, who has recommended seeing me every 3 months due to the numerous amount of moles on my skin.