Difficult decision

[DancerDonna]

I have a really difficult decision to make. I will have surgery for my second tumor in my left breast in early Sept. Both tumors have been HER2 +. I developed lymphedema in my left arm and hand after a breast infection, although I had only lost 3 nodes in a sentinel node biopsy. I will have a unilateral mastectomy with immediate DIEP reconstruction.
I am negative for BRCA, but am being tested next for BART, a rare mutation. If that is positive, I’ll instead have bilateral mastectomy with DIEP. The doc will attempt sentinel node biopsy and we will hope and pray that either the dye or radioactive substance moves since my breast has been through surgery, chemo, radiation, infection, and lymphedema.
The difficulty is my decision in what to tell the doc to do if sentinel node biopsy fails. He could remove no nodes, all the level 1 nodes, or all the level 1 and 2—an axillary dissection. Three other surgeons I saw proposed removing two or three nodes and sending them to the lab for freezing and slide making, if sentinel node dissection failed. This doctor, in the same city as the DIEP doc, says that would be a shot in the dark and he doesn’t want to do that.
If I have a positive node that is not identified, I won’t get to take more chemo. Unless the tumor is larger than is thought from the biopsy.
About six weeks after my lymphedema diagnosis, I met a woman who had an arm like an elephant leg. I still have nightmares about that. So I am afraid of my lymphedema getting worse, and the more nodes are removed, the greater that risk. But I am also afraid of cancer, and would hate to miss out on getting more chemo and probably more herceptin if I have one or more positive nodes not found.
Right now, it seems like it might be the most difficult decision I’ve ever had to make. Anyone have any words of wisdom?