Lobular Intraepithelial neoplasia or LCIS

I've never had ILC, but I do have classic LCIS (and a weak family history).  My oncologists were somewhat supportive of mastectomies, but since my breast surgeon was definitely not, and she was the only surgeon in my insurance, well, if you can't find a surgeon to do the surgery, you're not going to have surgery.  Your oncologist is surely not going to do the surgery. 

However, my situation is not like yours: I didn't give me an estimate of 90% incidence of breast cancer though (more like 'somewhere between 10% and 60%, but probably closer to 10%.) But they don't know hardly anything about predicting breast cancer.  I did do 5 years of tamoxifen.  It would have been nice to have that option.  I don't know if it would be an option if I have more issues.

I'm so sorry you got a surgeon who treats you like a piece of tissue! Its so much easier when you have a surgeon that can relate.  I've read that  most surgeons just love to do surgery, and its almost impossible to find a person who can cut you up, put you back together again, *and* be warm and fuzzy.  (I did have one, but that was an entirely different surgical specialty.)  I haven't had breast reconstruction, but from what I've read, if you have reconstruction, it can be a longer process, so, in my book, that would up my requirements for someone who can relate.

There have been many women in this forum who have 'only' had LCIS (in other words, not  (LCIS plus ILC and DCIS)) who have gotten mastectomies approved by insurance.  In fact, I don't remember anyone posting who had LCIS and said their insurance denied mastectomies.

Its so hard not to worry, especially with all you've been through. But, in this long term studies of LCIS alone, in this paper, about 5% of patients with LCIS got invasive breast cancer within 5 years of their LCIS diagnosis.  Those are pretty good odds to me. http://jco.ascopubs.org/content/23/24/5534/T3.expansion.html 

Let us know how it goes, OK?