PLCIS how aggressive is it?

mammograms do not show lobular cancer very well. An MRI is much better for that. As you are pleomorphic clean margins are important

Lily & Suzie, they don't "remove" LCIS, much less with clean margins. That is not how this condition works. It tends to be diffusely through the breast, often also bilaterally. It is a high-risk marker, not a discrete mass, and is usually found as an incidental finding with something else. On its own it isn't usually visible on imaging.

caligirl----even though PLCIS is thought to be more serious than classic LCIS, most of the literature reports it "may" act like  DCIS. But even with most cases of DCIS, you still have time to think over your options, get medical opinions and make your decisions. (even with most invasive bc's this is also true; most bc is slow growing; there are only a very few bc's that require immediate decisions.) I don't have any specific info on the progression of PLCIS, but I remember my breast surgeon stating that my classic LCIS had <5% chance of becoming invasive over time.  (I chose high risk surveillance of alternating mammos and MRIs and preventative meds, which I  continue to do now , and I haven't needed any further biopsies or lumpectomies in all these 11 years. (keeping fingers crossed for upcoming mammo next week)--I took tamoxifen for 5 years and now still take evista.  You mentioned a recent MRI that was good, I think you could certainly just hang tight and see what your mammo results are. In all of this, have you maybe considered taking tamoxifen? Feel free to PM me if you want to talk.

anne 

I'm sorry you are going through this.  As with almost everything concerned with xLCIS, there is a lot of controversy.  

In addition, PLCIS was only recently recognized.  (<Classic> LCIS was first described in the early 1940s; PLCIS was first described in the mid-1990s.)  Classic LCIS is normally multifocal (meaning there are normally multiple spots of it in a breast), and is often bilateral (meaning it occurs in both breasts).    They know this about classic LCIS because up to about 1990, they routinely did bilateral mastectomies on classic LCIS patients, and they could look at the mastectomy specimens. There is very sparse information about PLCIS, so I don't think they know whether the same is true for PLCIS.  Since PLCIS is somewhat related to LCIS, there is the possibility PLCIS is also multifocal and bilateral, but I don't think we know that for sure.

1)This recent paper looked at 31 cases of PLCIS (with nothing worse found at the time of PLCIS diagnosis, and no history of anything worse than PLCIS). The article is under a paywall, so I haven't looked at the actual article. From the abstract, I'm not sure if they followed all 31 people for 12 years.  But anyways, after up to 12 years, they found 4 cases of invasive carcinoma, and they say they had 2 cases of 'recurrent' PLCIS. 

http://www.ncbi.nlm.nih.gov/pubmed/24372322

I wondered what 'recurrent PLCIS' meant, because, as others have stated, classic LCIS is often not detected on any imaging.  But maybe this next paper has more insight on this point.

PLCIS is also regularly associated with comedo necrosis and
calcification and hence is often mammographically detectable, in
contrast to classical LCIS (CLCIS)[1-5].  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC412762...

Note the word 'often'.  So maybe PLCIS shows up more frequently in mammograms than does classic LCIS or ILC??  In their review, after initial excision, they didn't find any of the PLCIS patients had any recurrence worse than more PLCIS.  This second paper (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4127624/ ) recommends getting clear margins for PLCIS.

So, we don't have much information at all, but in the first paper they found 4 PLCIS people (out of 31) got invasive carcinoma when they looked at them for up to 12 years.  That means that 27 PLCIS patients did NOT get anything worse than more PLCIS in a period of up to 12 years.

There's a lot we don't know, but since they haven't detected any invasive cancer for you, I would consider talking to your docs, and consider antihormonals (at least if your PLCIS is ER+ or PR+) and/or re-excision to get clean margins for the PLCIS (as they generally recommend for DCIS) and/or mastectomy(s) and/or radiation.  (I doubt if it would be necessary to do both mastectomy(s) and radiation unless possibly they found something worse.)

caligirl-----early on, it was kinda stressful, but now I've been doing high risk surveillance for so long (11 years) that I'm so used to it. The only thing that really bothers me is the IV that I have to have with my MRI; they have a hard time getting IVs into me. Other than that. it's not a big deal to me. actually, the fact that I'm watched so closely, is comforting to me; if something is there, they will be more likely to find it early, when it is more easily treated.

anne