Hi @mchler73 - sorry you’ve gone through this, too.

Yes, I have LGASC, and it took multiple rounds of pathologists to confirm it. As you have learned, too, LGASC is so rare.

My oncologist described it as an aggressive cancer but with an extremely favorable prognosis. He said (as well as other LGASC online resources) that it typically does not metastasize; however, it is known to reoccur in the same area - that’s why we decided on a mastectomy and not just a lumpectomy with radiation.

Hard decision but I knew pretty quickly for various reasons that I wanted the bilateral mastectomy option and reconstruction.

I have been told that with the bilateral mastectomy, there is no data to show that chemo or radiation is helpful with LGASC.

I do have a CHEK2 mutation.

I am glad I did the mastectomy instead of just treating the left breast. The pathology at my mastectomy showed I already had atypical cells in my right breast that were not showing up on mammogram or ultrasound. And, my oncologist said that most likely this would not have been another LGASC cancer, but some other form of breast cancer.

So, that’s the scoop on my experience with LGASC. I will continue “surveillance” for 5 years with oncology.

Hope this is helpful. Let me know if you have any other questions. I am on week 3 of recovery from getting my tissue expanders swapped for implants, along with fat grafting (lipo) to smooth out the breasts.