What's your ILC story?

Yes, ILC is covered for BMX and all reconstruction/revisions as long as you live with this. I chose the BMX because my PS said there is a greater risk of recurrence with ILC. I didn't have BC in the right breast, but had pre-cancerous cells which sealed my decision was right. I didn't want to be waiting for the other shoe to drop. Do what you feel is right.

Robin

bump

I was 43 and having my second mammogram. The first one said I had dense breasts and to come back in a year. I had no symptoms, no lump. My mammogram showed some calcifications. When radiologist zoomed i, there was a slight shadow. After ultrasound and biopsy, ILC was confirmed. They thought it was only 1.4 cm and that my nodes were clear. MRI showed 5 small masses. But after DMX, they found 3.4 cm mass with lymphovascular invasion and 2 lymph nodes positive with extracapsular extension. None of my doctors could feel anything on exams even when they knew where the mass was. It was just luck that they found it instead of waiting another year. My treatment plan was based on Oncotype number which has not been validated for ILC or for premenopausal node-positive women. We need more research to find proper treatments for ILC instead of just assuming it will respond as IDC.

I had IDC , lumpectomy, re-excision, chemo and radiation (24 nodes removed due to failed SNB, all neg) in 2003.

I refused Tamoxifen or AI

I thought I would never get breast cancer again, largely because I was told so many times that it comes back in the first five years, rarely after that. NOW, I know that is completely wrong, but I was told that by doctors!

Then after a long fall of seeing specialists for multiple other health issues, I ended the year with a diagnostic mammogram due to pain in left breast. (I might add, I was ALWAYS told pain is NOT a symptom of breast cancer. Also, WRONG! ) Nothing showed up on the mammogram but they did an US and it showed up on that. A new ILC in the same breast.

Biopsy in 11/2018, left mastectomy 01/2019 with DIEP reconstruction. I tried AI for 6 months and it raised my cholesterol significantly. I wasn't in agreement that lessening estrogen is a good thing for all post-menopausal women with breast cancer, so I quit and my only regret is that I ever took it in the first place.

As for BMX, I wanted that but was refused. I was told the cancer hospital I went to has a policy of not removing a healthy breast unless the patient is BRCA + ! At first I was angry. Now I see it as "water over the dam," and I put it behind me.

Then the other "Big C" aka Covid 19, came and for me, breast cancer is no longer what I worry about.