TNBC

Hi Fran, I did a bit of research into the research to see what there might already be known and be out there, that might be of help to you in this decision.Often people seem to react in a knee-jerk way, esp people who have not had cancer or dealt with it, without knowing what the risks are, what the facts are, what the best choices are, and there are so many scare-mongers who assume bilateral mastectomies prevent all chance of cancer recurrence in all situations. On the other hand when you are scared it feels so important to find a way out of that scared place asap

I found that there was a study reported on last December in Journal of Clinical Oncology "Women with BRCA1 mutations should have preventive ovarian surgery by age 35"

http://www.news-medical.net/news/20140225/Study-Women-with-BRCA1-mutations-should-have-preventive-ovarian-surgery-by-age-35.aspx

Here is an article about a reportalso Dec 2014 on a small Canadian study that found a double mastectomy gave a  50% reduction in further breast cancer in women with a first breast cancer and  abnormal BRCA1 genes.

http://www.breastcancer.org/research-news/20140404

Here is a study (from 2001)in the Journal of the National Cancer Institute of women with BRCA1/2 who had bilateral mastectomies:

http://jnci.oxfordjournals.org/content/93/21/1633.long

I hope these might be useful to send to your GP and oncologist and to discuss with them.

From what I have read, it seems that it is not stupid to choose to simply wait and test and be vigilant, nor is it stupid to choose to have your ovaries, uterus and both breasts removed either. Both appear to be sensible, and valid if scary solutions to a rather scary problem, and both have risks, and  I guess ultimately it is a matter of knowing yourself and figuring out what will give you the best quality of life, length of life etc. Also, it is something you can afford to take your time over. If you choose now to wait and see, and then that causes too much anxiety you can then change your mind if you want to.

I belong to 23andMe.com which is a genome project where I got my genome analysed in 2013 . There was a woman there with BRCA1 gene abnormalites who said, "It is really good to know this so I can be careful about cancer while having my babies and breast feeding, and then I will probably go and get ovaries and breasts removed, and I can live with that and do things at my own pace as much as possible"

Be of good heart, you sound like the sort of  person who gets the facts and makes good decisions. My thoughts are with you. I hope this research is of help.

Jessica