10 cm span on LCIS. Big decision to make

I had 7cm of DCIS upon initial diagnosis. Imaging and biopsies couldn’t find anything invasive, but my breast surgeon repeatedly told me she rarely saw such extensive DCIS without some kind of invasive component hiding somewhere (not to scare me, but more to prepare me if they found something more). A lumpectomy would have been disfiguring and for a multitude of reasons I personally chose a bilateral mastectomy with immediate reconstruction. The did a sentinel node biopsy and to my surprise, there was 3mm of er+|pr+ her2+ IDC on 1 of 3 nodes. They never could find anything within my extensive DCIS that was removed. Being it was a unique case, it was brought to the tumor board and I ended up doing chemo, targeted treatment, rads, and hormone treatment. Not an easy path and certainly not one I expected with an initial DCIS diagnosis!

This initial diagnosis and decision stage was one of the hardest for me. The decision is so personal. I wish you the best and am willing to answer any questions you have.

For me personally, I would not have changed the order. So far, beyond some skin tightening on my radiated side, my implant has “survived” radiation. I do acknowledge that could continue to change as time goes on since I’m only 3 months post radiation. I have not done anything cosmetically beyond the implants. I could do some fat grafting, increase my implant size, nipple reconstruction, etc, but for me personally I do not plan on doing anything for quite a while. I am satisfied with what I have for now. I have 3 young boys (6, 4, and 2), teach elementary special education, and have an active lifestyle so for me personally, cosmetic look isn’t as important as limiting number of surgeries and being able to remain active.

Hi Peggysmom, I completely understand your hesitation and concerns. One question i would ask your oncologist, if you do bilateral mastectomy and assuming post-surgery pathology does not change your diagnosis and staging, will they still recommend hormonal treatment or will the surgery be the end of it?

Speaking of direct to implant reconstruction, I am not sure any plastic surgeon could be 100% certain because a lot depends on the tissues status after the mastectomy surgery and they never know until it's over.

I had a confirmed case of cancer in one breast before surgery but it was tiny in size and I was considered a good candidate for direct to implant. There was no indication of lymph nodes involvement before surgery and nothing was seen on scans. Pre-surgery staging 1a. They found macromets in lymph nodes during mastectomy on the cancer side and very extensive LCIS on the non-cancer side. After the surgical oncologist did her best to remove two tumors one of which was very close to the chest wall, the plastic surgeon could not do direct to implant because the tissues were too damaged. It all eventually ended well but very different from what was expected.

I remember I had a difficult time deciding whether to even do the left side at all because there was no cancer and no diagnosed LCIS. Looking back I understand it was a disaster waiting to happen and am very glad I didn't have to continue frequent monitoring, biopsies, etc.

Good luck with your decision!