I've learned that medical professionals (doctors, nurses, techs, etc) can say things/react in ways that are either comforting or upsetting. Regardless, I do think what and how they communicate is a method of them to personally cope and provide perspective.
So, while having a recurrence in multiple lymph nodes in my groin is not what I was "expecting" since my successful BRAF treatment & Keytruda – all my PET CT and MRI scans showed it is the only area affected. Along the way in the past week, one of the doctors said "you take the good news you can get."
At the interdiscplinary hospital I go to, my case made it to the tumor board – wherein multiple doctors from different disciplines discussed a recommended approach. They determined I am going to follow a 3 step protocol (1) immediately go back to Taf/Mek pills to bring down groin until surgery (2) have groin surgery to get the melanoma out (3) follow-up/continue with Keytruda infusions.
I learned that this recurrence was actually different lymph nodes than those affected in Nov 2016, but part of the same region/lymphatic system in the groin. The working hypothesis is that the Keytruda may actually be working (since the previous hypermetabolic nodes are 'dead' & melanoma not showing up elsewhere), but apparently there are some PD1 pathways that do not respond as well to Keytruda. My doctor indicated he had seen other patients where certain tumors respond and others don't – I know several on this board have this experience. At this point, hopefully removal of the problematic area will help me in the future…
So, I realize surgery is a huge undertaking and of course potential recovery/lymphadema – but I agreed this was the path to go on. They said if after surgery I have another recurrence, we will then evaluate how to best target the area(s) or try out ipi/nivo again.
It is interesting to learn from everyone on why doctors are making certain treatment decisions at specific points in time.
Thanks for the good wishes in the prior thread.
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