Jan 23, 2009 11:37AM nash wrote:
I have PLCIS and PILC, so my situation is a little different than yours in that I had invasive disease. The PILC was removed via lumpectomy, and after sugery it was determined that I had extensive PLCIS left in the breast. At first my surgeon and the tumor board at the university hospital where I had sugery recommended bilat mast. This recommendation was due in large part to the fact that my surgeon trained at MD Anderson, and their standard of care for PLCIS is bilat mast. They are one of the few institutions that I know of to come out with a clear path of treatment for PLCIS.
The bilat mast was presented to me as optional, but recommended. My case ended up going to tumor board four times, though, and in the end they decided I was more at risk for chest wall recurrence of the PILC and distant mets than a new primary due to the PLCIS, and that if I wanted to stick with the lumpectomy, that was fine.
My first oncologist had also recommended bilat mast, but she had a personal bias in that she was (in her words) terrified of getting breast cancer, and so that's what she would do. I recently switched my followup care to a different oncologist, who dismissed the PLCIS as a non-issue.
So, as you can see and as you've already figured out in your own situation, there is no consensus of how to handle PLCIS. If you google it, you also get conflicting research studies on how best to treat it.
I suspect that my PILC arose directly from my PLCIS, and if I do end up with a new primary or a local recurrence, I will go with a bilat mast. Right now I'm personally OK with annual MRIs and mammos to monitor the situation. But that's just me--other women would probably not be comfortable with that decision.
I honestly don't know what I'd do in your shoes. You don't have invasive disease. It may or may not progress into invasive disease. Bilat mast/reconstruction is major surgery that can't be reversed and doesn't give you a 100% guarantee that you won't get bc (my surgeon told me I'd have a 95% reduction in local recurrence with bilat mast). But if the surgery would ease your mind, then it's the right choice for you.
Basically you're just going to have to go with your gut instinct on what is best for you, b/c there is really no standard of care for PLCIS. Each doc I've run into has had his/her own opinion on what to do. It sucks to be stuck in these grey areas--believe me, I know.
You said you had a lumpectomy--I assume they did not get clean margins around the PLCIS?
Hopefully someone else will come along and weigh in on this. You may want to also post over on the ILC board, b/c some of the other PILC girls may also have PLCIS.