Hi — I’m new here and honestly still trying to process all of this.
I was diagnosed last month with bilateral invasive lobular carcinoma and just had a double mastectomy. My final pathology came back showing pleomorphic invasive lobular carcinoma on the right side.
They found cancer in 6 lymph nodes on the right, with extranodal extension into the surrounding tissue, which has me a little more freaked out.
I’ve been reading that pleomorphic ILC can be more aggressive, and now I’m kind of spiraling about whether this changes things for me. The left side has clear margins and no nodes involved.
I meet with my oncologist tomorrow to go over my chemo/radiation plan, and I’m trying to go in with some idea of what to ask.
Has anyone here had pleomorphic ILC?
Did your treatment plan end up being different because of it?
Especially if you had multiple positive nodes or extranodal extension.
I’d really appreciate hearing real experiences — even just what you wish you had asked at the beginning.
Thank you 💕😭❤️