Dec 5, 2018 10:15AM - edited Dec 5, 2018 10:17AM by claireinaz
Hi there, better,
So sorry you have to join us and our club no one wants to be a member of...but you will find so much information and guidance here and (at least for me) it made my journey much less frightening than it might have been without this website and discussion forum.
One thing I'd ask your surgeon is if you have been dx with dense breasts which can hide masses. ILC hides from regular scans like mammograms, and also has a tendency to be multi-focal (found or develops in both breasts over time). I had dense breasts, but had 5 clear mammos that didn't report the problem because the problem hid in my dense tissue and from scans because it was ILC and often doesn't grow in a mass that is easily detectable.
I made the decision to get a BMX because I didn't trust any scan after the false negatives, and because of my dense breast tissue and that it was ILC. After the surgery the "good" breast showed ILC hyperplasia, meaning it could have turned dangerous later. So I was glad I had the BMX in addition to lumpectomy, chemo and radiation.
Surgery means you have to give to get potential protection. You do lose sensation in your breasts, and I sometimes feel sad about that. But for me a bit of sadness was better than constant worry about what might get missed again in the future. I had reconstruction, and am pretty happy with the cosmetic results.
Others I know will weigh in with more advice. Once you get your entire status (lymph node status, grade, stage, size, hormone receptor status etc.) add it to your signature line so we can tailor our help to your situation. It helps us help you.
Meanwhile, believe that you will get fierce, kick cancer in its *ass, and get on with your long life because you will. (PS I deleted the following post because for some reason it double-posted my response).
Claire in AZ