Looking for some feedback/opinions on my situation, and particularly on CLNDs. Here’s the backstory:
Diagnosed IIIB 18 months ago. Resected and scans clear. Put on 12-month blind clinical trial of either opdivo or yervoy+opdivo. Scans clear through 15 months. Last month, ground-glass area in CT scan, which they thought might be a slow growing tumor, but they didn’t think it was melanoma. So I was starting to feel pretty good, and then … dermatologist visit finds three new melanomas on the skin. Lab report indicates probable distant spread from original primary, which would make me stage 4. Oncologist disagrees though. I had just done a CT scan, and other than the ground-glass area, which he DOES NOT think looks like melanoma, they didn’t see anything. Orders a PET scan, but says that - until proof to contrary - says that we are going to treat it as three new primaries. Should say that they have been pretty widely-dispersed on body. First, primary was on middle-upper back, the next three on left shoulder, right chest and left buttocks. PET came back clean (even ground-glass area wasn’t showing up-take).
So, last week, I had three simultaneous WLE/SLNBs. The people at Abbott NW in Minneapolis told me that was a record. Never seen three simultaneous WLEs, and I’ve now had 4 melanomas (perhaps all new primaries, but I’m not convinced that they know for sure) in two years). Bad news is that they found a small tumor in the sentinal lymph node for ALL three cases.
Wondering about next steps. I made it through my immunotherapy (whichever it was) with only moderate shortness of breath and dry-mouth. Assuming that the other three are unrelated, it appears that it was possibly effective and NOT uneffective (no spread). We didn’t do a CLND, partly because they said that there was a study that said that it didn’t improve survivability, and second because my tumors from the back were found in one lymph node on both sides, so they would have had to take out both the right and left side axillary.
I’m pretty sure that they will recommend return to immunotherapy, which seems logical to me. Here’s my question. I’m afraid that they are going to recommend the CLND this time around, and it would be three areas this time. Right axillary, left axillary, and left groin. For people that have had the CLND, how bad was it, and how did it affect quality of life? Has anyone ever had all lymph nodes from two areas removed? What about three? I’m pretty sure that - if it’s suggested - I’m going to refuse, but I would love to get experiences from people who have had it. Thanks for reading.