New dx of small triple positive IDC - treatment questions

TTfan

i'm confused and scared after a new diagnosis of a triple positive IBC found on screening mammogram.  Preoperatively, all my medical providers talked about the aggressiveness of her2 positive cancers and forewarned me about the need for a year of herceptin.  They convinced me that Herceptin was going to save my life. After the final pathology showed the tumor was only 4mm in size and 0/4 sentinel nodes, therefore a T1a stage, my kaiser doctors have said there is no need for chemo or Herceptin as survival is so good without them.  By good they seem to mean about 85 to 95% five year recurrence free survival.  While I know so many other women with this nasty disease have a much worse prognosis, and I am truly grateful it was caught so early, a month ago I was planning to live to 95!

I'm wondering if any of you with her2 positive T1a disease could share your decision making about chemo/Herceptin. I have read these discussion boards extensively, and see so many women with this stage cancer who are treated with chemo/Herceptin, and none so far that have chosen not to be treated. I am very confused about what to do. I may not have a choice, as it looks like Kaiser will refuse to pay for it anyway as the NCCN guidelines do not recommend it unless the tumor is >5 mm.   Does 1.1 mm less really change that much about treatment??  I am looking into the ATEMPT trial out of Dana-Farber that compares T – DM1 with paclitaxel and Herceptin for early-stage tumors but would probably have to pay for much of it out-of-pocket.

Any words of experience/wisdom?  And thanks for reading through this very long post!