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BRCA gene testing

(4 Posts)
KnickerBockerGlooooory Thu 26-May-16 21:43:50

Has anyone had this testing done privately? I have been through the genetics screening programme with the NHS but because I have no living relatives with the disease, it seems they are unwilling to test me. However I lost my mum to breast cancer when she was 45, and as I rapidly approach the same age I find myself worrying more and more over every little twinge. I am tempted to look into a double mastectomoy tbh and be done with the worry, especially with 2 DC who could also potentially have inherited the gene. TIA

whirlywhale Fri 27-May-16 09:58:48

Hi imagine, you'll get loads of replies,

I've just finished BC treatment, was diagnosed last June, was "high risk" as my mum and aunts died of BC, so when diagnosed wasn't a complete shock.

The BRCA test is a biggy I personally haven't gone for one, even though I got breast cancer. You're right they won't offer it to you with no living relatives, I am now classed in my family as the "living relative" but am finding it hard to come to a decision about having it. I have a daughter so will at some stage have it as would hate for her to have to go through what I have but am giving myself time to recover first physically and mentally.

I had all my treatment privately and if I had the test would probably do it that way too, so will watch your post with interest.

What I would consider maybe is paying for is a yearly mammogramms/MRI's. I had them as part of the family history screening programme. My BC was discovered at my annual checkup last year, (I felt no lumps they were tiny and I wouldn't have felt them for a while..) am grateful that I was being monitored as would have been much worse if I'd have waited as had one lymph node with cancer in.

Is a horrible thing to have to think about, deffo worth talking to someone about, twinges will worry you of course, just keep checking yourself regularly and see your GP if you're concerned and you will be seen quickly..

Good luck and good health!
Nix x

Supposedtobeworking1 Fri 27-May-16 14:10:59

I haven't had the test done but did go through the process with the NHS screening team to be told I couldn't have the test because of the lack of living relative. My mother, aunt and maternal grandmother were all diagnosed with BC in their early 40's and all died from the disease within 8 years of diagnosis. I am the only female left in my family in terms of direct blood relatives because BC has taken all of the others so on paper I'm quite high risk. I am now just a few months away from my 40th birthday and whilst I can't have the genetic screening I have been told that I will be put onto an early screening programme that will begin as from my 40th birthday which is good. It does cause me a lot of worry as having gone through the loss of my mum in my late teens, were I to suffer the same fate at the same sort of age, my DS would also still be in his teens and I really, really don't want him to have to go through what I experienced.

KnickerBockerGlooooory Fri 27-May-16 17:33:51

Thanks both. I am similar in that my mum, her cousin and my DF's mum (so my gran) all were diagnosed with BC in their 40's and so it runs down both sides of the family. Luckily I already have an annual mammogram and attend a breast clinic - but like you Supposed I do panic about the disease catching me early and leaving DC's behind. Having also lost my mum as a teen, I would do anything to avoid the same happening to my girls.
Whirly hope life is good for you here on in xxx

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