Hey folks, I’m back again. Quick recap...
Nodular Mel back of calf 1.5mm deep, no ulceration
WLE - clear
SLNB - not clear, involved less than 1mm (only took one node from groin)
Making me now IIIa. (Until I do the PET/MRI scans to see if it’s elsewhere)
The crappy part about my story was I received a phone call from the VA the other day stating that everything was clean. Only to go to my surgery follow up today and be told “actually there was cancer on the SLNB”. So I have already have had quite the up and down ride with this.
I am on Long Island in NY and looking to take my case to the best. I have received names like Dr. Weber at NYU, Dr. Postow at MSK, Dr. Kudelka at Stony Brook. Of course I’ve heard many other names from friends/family and what you folks have said, but how do I decide? I live in Stony Brook so that’s convenient for the one but the doc isnt renowned like Weber or Postow. I’ve seen other names on this forum for docs at MSK in Manhattan as well, Chapman? I don’t know who to choose, but I do know the VA is not where I want to fight this. I would like a doctor who won’t treat me like he’s doing me a favor by seeing me that day. And someone who has a team that will stay on top of things and not say “oh sorry, we forgot to tell you blah blah blah” or get my pathology report wrong.
How do I get my BRAF checked?
Should I get my LDH checked?
Guessing PET scan is next step and MRI. Will they want to take more lymph nodes regardless or only if PET shows something? I’ve read that a dissection is no longer considered worth the risk of lymphedema. And how bad is lymphedema? I fly a lot for work, would that complicate me going back to work?
I’ve seen immunotherapys of Opdivo, Keytruda, and IPI, but also Nivo, Pembro, and Yervoy. Is that just brand names of the same drugs? Does one work better than the other? Most common draw backs to those?
What if it was just the one lymph node that is involved. Is immunotherapy still needed?
And now that I am IIIa, is it almost a certainty that I will have a reoccurrence somewhere else in my body at some point? (granted it hasn’t already metastasized) It seems some of you folks have almost gotten used to the fact that this crap doesn’t go away ever.
Again as always, I am very grateful to all of you and your willingness to share your experiences. I hope one day I can be the book of knowledge for someone that started in my position. Actually I hope no one ever has to experience this....cancer sucks