Hi does anyone who was diagnosed with stage three non primary have any updates following PET or other shows later on their journey following original diagnosis.
Hi Rescue me my team told me not to worry about the primary cancer and that it was a bit academic to find it, that was because I was on systemic treatment that would work on the whole body, and also because my own immune system might have dealt with the primary years ago.
As we have been diagnosed with skin cancer they did before I started treatment send me for an eye examination to see if it was ocular melanoma and to a dermatologist to find anything on the skin, the next test for mucosal melanoma (an endoscopy I think) was not done, as they said it was academic and the systemic treatment was working at that stage. I have never had a PET scan only CT scans with contrast.
I did find reading the Macmillan info below helped, rereading that the primary may have already been dealt with as one possible explanation.
It was just something I learnt to let go of. Although the original melanoma was not found the team felt that it was cutaneous, on the skin and probably on my legs. I once saw at a melanoma patient conference that very few ocular or mucosal melanomas have a BRAF protein part and the fact that I’m BRAF positive seems to tie in with things.
I hope you get to talk to your team to put your mind at rest.
