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November 22, 2017 at 2:26 am #23238mableParticipant
This is my first time to post here. I was diagnosed with a Stage 1 MM in July of 2016 at the age of 41. Per my path report (read by a dermopath), I had 0.35mm lesion with no mitosis in the dermal layer, one mitotic cell in the epidermis, no ulceration and a pathologic stage T1a. Three weeks later, I had a WLE with clear margins and no evidence of residual melanoma detected. I have had several biopsies since then, approximately a dozen now, and all have come back with dysplastic changes. I have one area on my thigh that has re pigimented after the initial biopsy. The biopsy of that area reported a dysplastic lesion, but to be safe, my derm has recommend another WLE.
The reason for all this is that my father, who had an initial melanoma about 22 years ago – stage 2 with negative SLB and no known recurrent lesion, passed away earlier this year with a very aggressive (BRAF positive and NRAS positive) melanoma that had mets to the brain, spine, lungs and sacrum. He was diagnosed after stroke like symptoms from the brain mass and passed away 7 weeks later. His chest Xray a year earlier (taken for a gall bladder surgery) was clear, but after the diagnosis that the melanoma had returned, he had metastatic multiple nodules in both lungs. He had only started having back pain a few weeks prior, so all the oncologist said was this was a fast, aggressive MM and that it is uncommon to see both a positive BRAF and NRAS mutation.
Upon hearing this, my dermatologist recommended sending my original lesion out for the Castle test, which came back with a low risk for mets result. My question is this. How any of you had this test? I know it is new, but what are your provider’s thoughts on this? Obviously, I am under very close surveillance now (every 3 month skin checks and basically being de-moled), but is that enough? As you can imagine, at 42 with 2 little ones – a 7 year old and a 5 month old (I was pregnant when my father passed away), it is so hard not to worry about every headache or episode of back pain these days. I don’t want to go looking for things that are not there, but also want to be certain I am staying ahead of this as much as I can. If any of you have any advice or have dealt with similar, I would very much welcome your thoughts.
Thanks.December 1, 2017 at 3:21 pm #70299Catherine PooleKeymaster
the opinions on the validity of the Castle and other testing is mixed. Are they accurate at predicting? No one seems to know. So take it with a grain of salt. I also think there is some overreacting among the medical profession when there is family history (or the opposite!) Sounds like you are finding everything VERY early and benign. Dysplasia simply means the cells are dividing. Keep up the skin exams! As for your father’s diagnosis, nodular melanoma is the only one I know that is necessarily more aggressive than others. The NRAS and BRAF factors haven’t been implicated in speed of recurrence by studies.
Take good care and I’m sorry for your loss.
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