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BRCA2 positive and considering risk-reducing surgery - anyone else in this boat?

(5 Posts)
NotTooBothered Mon 31-Oct-16 14:08:20

So, a month or so ago I found out I'm BRCA2 positive and my breast cancer risk has shot up from 40% to 80%.

Cripes. shock

I am researching my options and I think I am leaning quite hard towards surgery. One of the things that's really apparent is that I am very, very lucky to be aware of my risk and in a position to reduce it. I am spending quite a bit of time reading blogs and forums by women undergoing breast cancer treatment - I do not in any way want to compare my situation to theirs. flowers

I am having a bit of a job separating out info and advice for completely preventative mastectomy and reconstruction with that for the (obviously much more complicated) procedures linked to cancer treatment.

I THINK that, because I would be having a bilateral mastectomy and reconstruction and I am not having any cancer treatment, that I might be a good candidate for straight-to-reconstruction implants with ADM (possibly without expanders, as I should be able to keep my nipples and skin?). And maybe lipomodelling to insulate/make the implants slightly less... implant-y?

I am trying not to think too much about having numb boobs, getting cold easily, and possibly not being able to keep my nipples, but I realise they are pretty small prices to pay for not being at an 80% risk of breast cancer.

Is there anyone else still around here who's been on this journey or is still with me in the boat? I feel very tired and confused, and I'm still only at the research stage (and not even thinking about having my ovaries removed yet - that's for later down the line, I think...)

shewolfmum Mon 31-Oct-16 22:45:59

I am needing to look at this and so far have got to questioning those actual figures before i think...i need to see how they get to those percentages. That's my work for the week. Haven't had test (mum and grandma died of ovarian) and guess it is only worth having it if i would consider surgery...so sitting with it all...

NotTooBothered Tue 01-Nov-16 10:45:41

I find the figures difficult to get my head around, too. Before I had my own gene analysis, I got bumped from 40% (family history) to 50% (mother known BRCA2) to 80% (me known BRCA2).

What I can't quite get my head around is why tamoxifen was the key offer at 50%, when the whole reason why I was 50% was because it was clearly 50-50 that I would be BRCA2 positive like my mum. Now that I am, my risk has jumped - but to 80%? That's a pretty scary number.

So far my counsellor has focussed on my breast cancer risk. My ovarian risk is now higher than typical as well, but I'm in my early 40s so the trade-off with early menopause/increased risk of osteoporosis & all that sort of stuff may not be worth taking just yet.

sofatrainer Wed 02-Nov-16 20:05:15

I'm sorry you are going through this, but as you say, at least you are able to put preventative measures into place. Please remember too that unfortunately you are also at significantly increased risk too of ovarian cancer which is far less successfully treated than breast cancer. I understand that at the moment your focus is on the breast cancer risk but the ovarian one is really significant and worth giving equally serious consideration too.

sofatrainer Wed 02-Nov-16 20:06:09

I'm so sorry, I saw that you mentioned the ovaries at the bottom of your message. Apologies

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