LCIS-Mastectomy

I can't give you any personal stories, but you will probably get more answers from the literature than you will in replies here.

In this study, out of 7 multifocal LCIS patients, 6 had clones that apparently originated from different clones. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=gene&Cmd=ShowDetailView&TermToSearch=8291&ordinalpos=1&itool=EntrezSystem2.PEntrez.Gene.Gene_ResultsPanel.Gene_RVDocSum

I'm not sure why you are interested in this question - most experts do agree that after they have found LCIS in one spot, if any subsequent invasive spots occur, they can occur ANYWHERE in the 2 breasts, regardless of where other spots of LCIS may or may not be.

"Among LCIS patients, invasive carcinoma occurs anywhere in the breast parenchyma. The risk of development of contralateral invasive cancer is very low in DCIS patients, but it is high in LCIS patients."http://www.ncbi.nlm.nih.gov/pubmed/8298449

In this 1991 study, 70% of women had multifocal disease (e.g. multiple spots of LCIS), and 50% of the patients found bilateral LCIS." Sampling of a single breast revealed multifocal disease in 70% (96/138). When both breasts were sampled, bilateral foci were found in 50% (41/82)." http://www.ncbi.nlm.nih.gov/pubmed/1853802

The group of women with 0.1mm worth of LCIS probably has about the same risk of breast cancer as the group of women with 10cm of LCIS. This is different than the case with invasive breast cancer, where the size of the tumor often plays a role in risk.

It is thought that most of the time, if an LCIS woman gets invasive breast cancer, the invasive breast cancer did NOT originate from the original LCIS or ALH lesion.  There are a small number of cases where the invasive cancer probably did originate with the LCIS or ALH lesion. 

So, according to current thinking, even if somehow you were able to remove ALL of your LCIS, ADH, and ALH lesions, both breasts would still be at increased risk of breast cancer.  

LCIS is a weird disease.