Clinical Course/Treatment Choices for LCIS Upgraded on Excision?

Girl53

All: I am LCIS woman upgraded to ILC on excision. Am making treatment decision now and will see breast surgical oncologist at Johns Hopkins Monday for second opinion. Want to ask him about -- and am wondering if anyone here has seen stats on:

*Clinical course for LCIS women upgraded on excision

*Treatment choices by LCIS women upgraded on excision.

Am asking this to find out whether patients upgraded on excision either perceive their disease to be more aggressive, or whether it actually is. Have read figures saying that, of the few LCIS women who go on to develop invasive cancer, it doesn't tend to happen until 10 or 15 years after the LCIS dx. But when it happens so early on (as it did for me), could this be predictor of future, double-sided trouble, and do patients choose treatment as if it were?

When first diagnosed with LCIS, I read everything I could find about how to monitor and manage it, telling myself that if an invasive cancer ever popped up (even a small one), I would probably have a bilateral MX. Have also seen conflicting reports re: whether LCIS is a marker for invasive cancer, a non-obligate precursor, or can be either. One recent study concludes that it can probably be either, but we don't yet know why:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4453073/

This piece also says that LCIS remains poorly understood and vastly understudied.

This is just one study but gives me pause about how much the presence of LCIS adds to my overall risk of recurrence or contralateral occurrence. I also have a very strong family history of BC.

Do we think that BS at a high-volume, well-established breast center like Hopkins might have some figures and insight about this relatively uncommon condition, and how LCIS ladies upgraded on excision usually choose to treat it?

Anonymous

girl53-----I don't have any stats for you, but once someone with LCIS develops ILC the clinical course and treatment are then based on the ILC, and no longer the LCIS. (as the ILC is the more serious of the 2 conditions and so that is what everything is now focused on). Since your ILC was found so soon after your diagnosis of LCIS, that means that it is highly likely that the ILC was already there, and they just didn't find it at the same time. (LCIS is often found incidentally, sometimes near the area of the invasive bc) It seems that nearly everything about LCIS is controversial; I've had 3 oncologists over the past 12 years, and they all have different opinions. (the first one felt very strongly that LCIS is most definitely a cancer, just a non-invasive one (and technically and pathologically it IS a stage 0, non-invasive, in-situ bc); my 2nd and 3rd oncologist opinions are that it is more of a marker for higher risk of invasive bc in the future. I hope you get some answers from this new oncologist at Hopkins, please let us know how it goes. Personally, I think I know what I would choose if faced with ILC with pre-existing LCIS; (I've had a lot of years to think about it), but that would be MY choice; which wouldn't necessarily be the right choice for YOU. (so even with stats, in the end, you still have to choose what is right for you and your individual situation. (hopefully, with the help of your medical team). Unfortunately, most of the docs don't make the decision for you, they just make a recommendation.

anne

Girl53

Anne: Thank you, as always, for your reply. You are so knowledgable about LCIS. I think I'm 90 percent at a decision for CPM after my meeting with genetics person yesterday; she came right out and said that if she were me, she'd probably do the surgery. Will talk to surgeon at Hopkins Monday and get recommendation for another oncologist (after my painful experience last Monday), and go ahead and schedule the procedure. Hoping we can do it before end of October or in early November and be on road to recovery by Thanksgiving. Want to send you private message, too. With hugs.

zinny

Girl53 - I agree, the ILC was there already, they just didn't catch it in the biopsy. My story is kind of funny, well, not really, but i had DCIS, upgraded to bilateral DCIS with second biopsy, upgraded to DCIS on one side and DCIS/LCIS/ILC on the other at excision.

My BMX choice is easy and obvious

Girl53

Zinny: Your story is something. I feel like "breast cancer lite" compared to that!

How are you doing? How did you find the surgery and first couple of weeks afterward? You have endocrine therapy and rads coming up?

Because my excisonal biopsy became my lumpectomy, my sentinel node hasn't been checked yet, and I'm so hoping it's okay. Oncologist I saw Monday seemed to be saying that my tumor profile is such that I might not even have to do endocrine therapy, which would be wonderful, as I'm wary of the side effects. We'll see.

Would love to hear about your surgery experience and how you're doing. You've been through a lot. With big hugs.