Newly diagnosed PLCIS

Ava_3 Member Posts: 6
Hello, not thrilled to be here but grateful that this forum exists :)
Newly diagnosed with PALCIS (triple negative Pleomorphic Apocrine Lobular Carcinoma in situ) with 'suspicious nodule' identified on MRI - so likely invasive component. Having had low grade DCIS (lumpectomy and 5 years tamoxifen) and removal of a benign papilloma in the same boob previously, this time the decision is a double mastectomy with (hopefully) semi-immediate reconstruction - pending sentinel node check. This seems to be a pretty rare condition and I'm not sure how to explain it to people. Still processing and working out how I feel. Any other PALCIS peeps in this group?  I'll also be interested in post mastectomy/reconstruction advice - especially how to best rehab. Many thanks, A