LCIS ER+/- and Tamox

Paula7

Okay, here's a thought that I'd very much like input on. Have you guys had your LCIS to test if it is Er+ or Er=? I don't think they usu. do that, right? At least at my Kaiser, I was told that is NOT the standard-of-care. However, I read Tamox is only indicated for Er+, so I said that'd be ridiculous for me to go on a medication for 5 yrs, suffer side effects, run risk of endometrial cancer, and the whole while it turning out the med was contraindicated if I had Er- LCIS cells. So, breast coordinator said she'd talk to the pathologists and they might make exception for me. I sure hope they do! That just seems CRAZY to me. Am I missing something??? They'd willingly cut off both my boobs (PBM), although i think they'd advise against it, but they won't test cells for Er+/- prophelactically to guide future treatment interventions,w hich for LCIS is all about prevention? We should all protest with all our doctors and insist! I hope none of you are taking tamox and have ER- cells without knowing. Oddly, I read somewhere that pre-menopausal women often have (more often have?) ER neg. cells while post-menopausal tends to be Er+. Maybe that's why they don't test? bc a neoplasia can change over time? Anyway, this was stunning to me, but I"m new to all this so I could well be missing something (she did say they can't test LCIS for her2/neu b/c it's not a cancer, but it was more like they can't, not that they don't or won't as with ER/Progesterone postive/negative.----Paula

Paula7

ADDENDUM: Well, never mind above for me in my case anyway. Met  w/ surgeon today and found out my .1 cm (1 mm) LCIS is too small to test for estrogen +/-, same with progesterone issue. Makes sense. She does NOT recommend excisional/lumpectomy to see if I have cancer right now, saying a LOT of us, everyone has risk of concurrent cancer (me adding, esp. at microscopic, microfocal level). You know those studies about how many women when autopsied from unrelated causes (auto accidents and stuff) have DCIS. I think it's like 20%? Anybody know? Maybe risk of concurrent/co-existing cancer isn't any greater for core-needle biopsied discovered LCIS than the risk for a LOT of people--not just breast cancer, but any kind of cancer at the microscopic level that may never go anywhere or become anything. that's the problem with this increased early detection of breast cancer, DCIS. I don't knwo that microscopic levels should be cut and radiated out, when it has good chance of never becoming anything. If it's cancer, including DCIS,  detected on a regular screening tool, then that may welll be a different story. --Paula

leaf

In this study

The reported prevalence of undiagnosed DCIS in autopsy studies, of approximately 9%, has been used to suggest a larger reservoir of DCIS may exist in the population. All types of study designs reviewed had limitations that may bias the estimate of progression in either direction. http://www.ncbi.nlm.nih.gov/pubmed/16319971

In another small study

At autopsy 2 women had IBC [Invasive breast cancer] (2%), the remaining in situ carcinoma (in situ BC) of microfocal type (18%), i.e. 15 (14%) intraductal carcinomas (DCIS), 4 (3%) lobular carcinoma in situ (LCIS) and one (1%) both DCIS and LCIS. http://www.ncbi.nlm.nih.gov/pubmed/2829956  (emphasis mine)

Based upon recent Danish autopsy studies, it has been estimated that about 25% of all women will develop in situ carcinoma, predominantly in the form of DCIS. Only a fraction of these lesions will evolve into a clinical manifest form, however. http://www.ncbi.nlm.nih.gov/pubmed/2851303

Maybe only Denmark includes the possibility of CIS in autopsies and writes papers on their findings :-).