Bonita

Dear LCISgirl, I feel your stress and anxiety for I too was dx with LCIS, however, I'm quite confused over your message.  I am 51 and was dx with LCIS in my R breast after a reduction.  I was told by the High Risk Breast Cancer center that LCIS is NOT breast cancer but rather nests or markers that will facilitate the fast growth of cancer SHOULD I ever develop cancer.  Your message sounds like the diagnoses of cancer was made based on the finding of LCIS?

I'm afraid I can't speak on the other findings in your breast tissue but on this I've done a lot of research.  Apparentely their is a movement afoot to have the name changed from LCIS to another because so many doctors that are not in the know misdiagnose this as actual cancer because of the term "carcinoma" that is in the name.  Sadly, that is what happened with me.  I was told by the plastic surgen (after he received the pathology report from the removed breast tissue) that I had breast cancer.  My case was forwarded to the High Risk center in Ottawa and, after three days of stress and depression, I was told I did not have cancer and that LCIS was NOT a cancer but an indicator of hightened risk.  I was 47 at the time.

Six month ago I was diagnosed with calcifications in my left breast.  Because of the breast reduction it is unclear if these are of any concern at this stage. 

A double mastectomy was definately something that I have concidered as I'm petrified of getting the big C, however, I've been told that if you get rid of your breasts you also have to get rid of your reproductive organs because one balances the other - in other words if you get rid of your breast all together you may end up with ovarian cancer, for example.   I don't mean to frighten you even more but I'm leading to something here.  Back a number of years ago when they discovered the BRCA1 and BRCA2 gene a group of women in the UK opted for the testing to determine if they would be in line for Breast cancer.  After finding out that they were they opted for radical mastectomies.  This was a report broadcasted by Grenada TV on the BBC network, I believe.  I don't know if a follow up study was ever done to find out if these women remain cancer free, if they still stand by their decision to have the RM, if they developed cancer elsewhere, etc.  But this could give you a starting point to research and find out if a follow up to this story has been done.  This may help you in your very difficult decision.  I still don't know what I will do if my situation gets worse.

I appologize for the very lengthy response but I hope this helps in some way.  I wish you well,

Bonita