I was diagnosed in Feb 2024 with PLCIS. Had lumpectomy. Clear margins - no DCIS or invasive cancer found. They know virtually nothing about PLCIS itself. As a pathologist said in a recent video on YouTube (from Dana Farber) "we are in a data free zone" when it comes to PLCIS. Mine was ER/PR negative. I wouldn't take Tamoxifen -- not at all convinced of its efficacy in my case for PLCIS, and two physicians said for ER/PR negative, there is no prophylactic benefit, anyway. And, as said, I wouldn't have taken it anyway. No data on it at all for patients like myself and there are real risks in taking it. I'm way past menopause. For now, I am doing monitoring, but no MRI with contrast (or, for now) due to false positives and gadolinium contrast concerns. Just the annual mammo/sono combo, with a physical exam by nurse practitioner 1-2 x per year. I had my first post lumpectomy imaging a couple of months ago - one year out from surgery. All clear thus far. "Pure PLCIS" is rare and they still haven't come to a clear consensus how to treat. For now, excisional biopsy (surgery) is necessary, with clear margins, as it has a higher upgrade rate compared to classic LCIS. They just do not know if it's a direct precursor to cancer and do not understand its behavior.
I also have zero BC in my family and tested negative across 77+ cancer mutations genes which includes about 25 or so related to BC.
There is a study--a meta study--in process. Two physicans in Italy are asking institutions around the world who have patients with "pure pleomorphic LCIS" and "pure Florid LCIS", how they were treated, and how they did overtime. If they had a recurrence, what were the circumstances, etc.
Now, this is wild. My breast surgeon at Columbia in NYC said that her team has not seen a recurrence in patients like myself. At least some patients going back as far as 2009.
Of course some do.
I just need more info--A LOT--more info before doing anything more radical.