Hi All! I also have/had ILC and when first diagnosed surgeon thought it felt/looked like a 2 and 3 cm tumor in different parts of the breast. I am small breasted so she recommended a mastectomy which I got nearly 4 weeks ago.

When she removed it, the pathology report measured it at 7.7 cm bc there were no non-cancerous cells between it. It was also a grade three tumor. Any tumor larger than 5 cm triggers a recommendation for radiation and chemo. But bc it hadn’t spread to nodes I got an oncotype test — and scored low enough to rule out chemo. Now I am headed for radiation but will likely enroll in a clinical trial at MSK for a 5 day course (vs 5 weeks). Then wait six months and get the exchange surgery.

Things I wish someone told me: The pain/soreness/healing takes months. I thought bc they recommended I take 4 weeks off I would feel better in that time. I am still very very sore and have sprained an intercostal muscle in lower rib that has made it impossible to make a lot of movements without a sharp pain. I should have rested more throughout.

Also: I wish I had been told more about going flat. I am an A, and feel in many ways that reconstruction was a mistake for me. My husband will be appreciative but it takes longer to heal with reconstruction and there are more chances for things to go wrong.

I meet with my oncologist soon where she will likely get me on Tamoxifen, which I am dreading. I am trying to learn more about how my diet will help me deal with hot flashes and the other side effects. I am 47, premenopausal.

I also highly recommend doing lots of breathing exercises before and after surgery—breathing in hope and joy and healing and breathing out pain and fear. You will get through this and be ok, just care for yourself and be patient. Sending positive thoughts for your treatment and recovery.