BRCA 2 with double mastectomy

leoc

I tested positive for BRCA2 in august 08 when I found I had BC, invasive lobular carcinoma, stage 1. I am 38. I decided to go ahead and do a double mastectomy. I have been comfronted with the fact that BRCA 1+2 have a high risk of getting ovarian cancer so the docs recommend I remove my ovaries by age 40. I want to know how urgent that decision is. Can I wait until I am 45 (closer to menopause)? Are there any women who have a similar diagnosis, who decided to wait and not get rid of their ovaries despite the high risks. Also would like to get some feedback from women who did remove their ovaries before 40 and their reactions to menopause.

thanks

smirks44

Hi!  I am BRCA2 as well, and have had a prophylactic bilateral mastectomy as well as oopherectomy.  My ooph was done at 40.  I am taking low levels of estrogen and progesterone, and have had only "mild warm moments".....no serious hot flashes or other symptoms at all.  I know that it differs greatly from person to person though.  Some people seem to sail through the surgical menopause without difficulties, and others have a really hard time with it!  These are tough choices!  If you havent already been there you should check out www.facingourrisk.org, as the boards there are for high risk women, both previvors and survivors......

theredheadamy

HI,

I'm BRAC1 + and diagnosed with BC in the right breast.  I am 39, and have no desire to have children (I have older step-children, but none of my own).  I opted for bilat mast and total supracervical hysterectomy, which occured 5 weeks ago, and it has not been (so far!) much of an issue hormonally.  I am not taking anything, and I find things very manageable.  I do not have any regrets, but I do think 40 has been shown to be the magic number in that the study I read (and I don't remember which one--sorry) found no ovarian cancer in anyone in that particular study under the age of 40, but did have a percentage with early stage ovarian cancer or pre-cancerous changes in the 40-45 group.  

I do think it is helpful to do some research, be educated about the risks and consequences and make the best decision you can for yourself.

I myself have no regrets and would do it again in a heartbeat.  Ovarian cancer scares the HE** out of me---much more so than BC does because we at least have a chance of catching BC early---I don't believe there is a good, reliable method of detecting ovarian cancer early.

 For what it's worth, I hope my experience helps you.

Good luck

Amy 

leoc

Hi Amy,

 Thanks so much for your reply. I hope that once the decision is made there will be no regrets, which is why I am taking the time to think about it.

 

 

leoc

well I am taking tamoxifen and don't have any side effects like hot flashes and vaginal dryness, so maybe I will be lucky when the ovaries come out and not feel too different.

Daudine

Hello leoc,

I am 38 years old. I have no cancer but BRCA1 positive. I had my ovaries and tubes taken out last March and bilateral mastectomy last May. My risks are very high 90% breast cancer and 65% ovarian cancer and in my family breast cancer hits very young (38-42-51 and 64). I did what I could do to lower my risks and I don't regret it. The oncologist told me I should have had these operations done at 28 years old to better lower my risks (10 years before the youngest case in the family). He explained that the longer I was exposed to hormones (ovaries), the higher my risks are!

 I know that every case is different and wish you good luck!

 Claudine

Daudine

Ho....forgot to mention that I have all of the menopause symtoms, hotflashes, nights sweats, vaginal dryness, insomnia even started arthritis this year...I am not sure if there is a link though!