newly dx brca 1 positive

greenfaerie

Hi all, I have just been reading through the posts about being brca positive and was surpried to see that most, if not all, opted for prophylactic mastectomies. I have a sister that just finsihed tx for ovarian ca, after having breast ca in 2001. She is currently 56. We lost our lovely brother in August to extremely aggressive prostate ca. He was only 52. There is a very strong hx of ca on our Dad's side ( 2 first cousins and 3 aunts). I am currently 49 and am starting to feel that I have just been plain lucky so far. I have to decide what course to take. It seems to me that if I opt the tamoxifen route, I am just delaying the mastectomy. I have started to think it would be better to get the surgery over with now (as I seem to not be getting any younger) and while I am still ca free. Any thoughts? Any regrets to those of you that have had prophylactic mastectomies? My head is spinning, and while my family is supportive it would be nice to hear from other women in the same boat. Thanks.

smithlme

There is a web site called FORCE at www.facingourrisk.org which is dedicated to genetic BRCA 1 & 2. I am BRCA 2+ and have had two different primary breast cancers. Had I known my genetic predisposition prior to cancer I would have made some very different choices...

Linda

BMac

If I had it to do over again I would have had a proph bilat mast before I got bc.  I had ovarian cancer 7 years ago which is when my sisters and I had the genetic testing.  We are all three of us BRCA1+.  My mum died of ovarian cancer 10 months before my diagnosis and our middle sister had bc 17 years ago and is still alive.

After ovarian treatments I was sent to a high risk bc clinic with annual MRI's.  I also was going for annual mammograms.  At the clinic I was discouraged from having a proph mast because I'd been stage III ovarian and their feeling was that the prognosis wasn't great so why put myself through that.

Well, as my ov onc said I beat the odds.  I would rather have had the mast and avoided the bc and feel that they were too relaxed in their advice to me.

greenfaerie

Thanks for the input. I suppose, at the end of the day, it is a numbers thing, isn't it?  Heaing from other women is extremely helpful to me right now. I checked out the Force website. There is loads of good info. I have a really good breast guy on my team, but the medical onc dr I went to was a total waste of time. She was clueless, so I am going to find someone else. I will have the first breast MRI next week and see what happens then.

Char2

I also was recently tested and I'm brca2+  My sister was the first to test positive and oppted for careful screening.  She had a normal breast mri then 5 months later another mri found stage 2 breast cancer. I now realize screening is not enough.  I will be getting a bi mastectomy Jan 21.  Good luck to you with your decision.

kt57

Char, MRIs 5 months apart is not the ususal surveillance protocol -- it's usually annual mammo and annual mri -- each 6 months apart.  Any particular reason your sister had hers repeated so soon.   Sorry it turned out the way it did.  Hope your surgery goes well in Jan.