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Positive for BRCA1 gene mutation

(6 Posts)
BluePancakes Mon 07-Dec-15 11:25:50

Found out today I am positive for the BRCA1 gene mutation, and was wondering if anyone else has been through it and what decisions you have made?

I'm fine - was kind of expecting it. Haven't cried yet, though I'm sure I will at some point. Mainly I feel sad for my girls as it's something they'll now need to be tested for when they're adults. I'm thinking of BSO; I originally wanted a full hysterectomy, but the recovery period is much better for BSO. I'm going to keep my boobs for now, as it's ovarian cancer that is predominant in my family, but go for regular screening. I'm 'only' 33, and know I don't want any more children, but despite having found research that pre-emptive surgery done before the age of 35 has much better survival rates, I've been told they may want to wait until I'm 40, so I'm expecting to have a fight on my hands.

weebarra Mon 07-Dec-15 11:29:46

I was diagnosed with BRCA2 when I had breast cancer. I lost the boobs anyway, but I had a BSO almost exactly a year ago. I already had three children. I assumed they would want to wait till I was 40 but I was 37 when they did it.
It does plunge you into menopause which is not pleasant, especially as I can't take HRT.

BluePancakes Mon 07-Dec-15 11:31:14

And also, I want to know if anyone has had to cope with early menopause that this surgery will cause, and any problems with that. That's probably what I'm most worried about right now, rather than surgery. Thanks.

BluePancakes Mon 07-Dec-15 11:32:52

x-posted weebarra. Do you mind me asking what your symptoms of menopause are and how you are coping with them? I've been googling lots, but I find it easier to relate to a real person, than a sterile medical document.

weebarra Mon 07-Dec-15 11:36:57

Hot flushes, insomnia, weight gain (but I'm on quite a lot of drugs too!), and totally TMI, but dryness when having sex. It's due to vaginal atrophy. I'm also grumpy, but that may be due to having 3 DCs, 7 and under!

BluePancakes Mon 07-Dec-15 11:41:24

I have to admit, I'm worried about dryness and loss of libido, as it seems lower than it used to be already, though that could be stress (we moved house recently and house still not up together for Christmas) or tiredness as I feel constantly busy atm.

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