LCIS recurrence

Nanka - Melissa is right - if you have one spot of LCIS, you normally have many LCIS spots in that breast, and often in the other breast too.  They know this because before about the mid-1990s, they normally did bilateral mastectomies on all/almost all LCIS patients.   Since you normally can't detect LCIS without looking at a sample of tissue in the breast (in other words, LCIS normally doesn't reliably show up on a mammogram, ultrasound, or MRI), they wouldn't know what tissue to remove if they wanted to remove all the spots of LCIS.  Even if they knew where all the LCIS spots were before removing them, they still would have problems, because when LCIS patients go on to get breast cancer, the subsequent breast cancer is often in a place that is NOT where the LCIS is known to have been.  In other words, once you have LCIS, breast cancer can happen anywhere in either breast.

So they normally don't get clean margins when they do an excision for LCIS, both because they don't know where the LCIS is, and also because even if you did remove the LCIS, many future breast cancers do not happen at the LCIS site but at some other site.  LCIS is difficult to study. 

Another difficulty with the situation is that if you are diagnosed with LCIS, then you do not know for sure if there was also a spot of ILC or IDC which hasn't been detected yet.  If you are first diagnosed with LCIS, then in 3 months or 1 year or 2 years later are diagnosed with ILC or IDC, you don't know if the ILC or IDC was as a consequence of the LCIS or whether the ILC/IDC happened independently.  In this small study, about half of subsequent DCIS or invasive bc was clonally related to their LCIS. nci.oxfordjournals.org/content/98/23/1673.full.pdf  . 

There certainly have been women here who have initially been diagnosed with LCIS, then, usually within about 2 years of time, are diagnosed with something worse.  The papers I've read say that the risk of LCIS does NOT go down with time, though it isn't anywhere as high risk as people with a deleterious BRCA mutation or people who had chest irradiation for lymphoma treatment.

This is perhaps the largest longest study of LCIS women.  http://www.ncbi.nlm.nih.gov/pubmed/?term=LCIS+Chuba  So some LCIS patients do go on to get ILC; otherwise it wouldn't be considered to be a risk factor for breast cancer.

I have seen one paper (I can't find it at the moment), which opined that women with invasive breast cancer who had LCIS in the vinicity did NOT have an increased risk for recurrance whether they had mastectomies or lumpectomies + radiation.  But, if I remember correctly, this, as is all things LCIS, was also controversial.

Dear lemon68, during an investigation of a cyst, a biopsy found my LCIS. It was found in a very dense area of my breast. Several biopsies later, my LCIS field was very large and IDC and microinvasive ILC was eventually found. I chose bilateral mx with reconstruction. Other breast was not dense and no LCIS was found. I know that there is high risk, but wonder if other factors may weigh in as well.