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BRCA1/2 gene testing, should I ? Would you?

(18 Posts)
wigglybeezer Wed 15-May-13 22:08:15

I have thinking about this for a couple of weeks as I have just lost a second aunt on my Dad's side to breast cancer ( and he has had prostrate cancer which can also be linked). I am not sure if I would want to know for sure, I think I would opt for enhanced screening, paying for private MRI,s if necessary. I think if I knew for sure I may feel a bit doomed, and I don't think I would go as far as Angelina anyway, or not until I was older anyway. One of my Aunts died at the same age I am now ( 45) : (

SparklyStream Wed 15-May-13 22:10:08

Hello wiggly, I've been pondering the same. My mother died of it in her 40s. I'm pretty sure I don't qualify for it in the nhs. What about you? Or perhaps you're considering the private route?

wigglybeezer Wed 15-May-13 22:22:28

I will go to GP and see if I qualify for extra screening on family history grounds without having to have the test. I was under the misguided impression that it was only passed on from the maternal side and so have been worry free up 'til now. I don't fancy a mastectomy, would ruin my sex life which is still important to me! If my Dad had a negative test we could all relax. I think I would pay for scans etc. rather than testing.

shaggymaggy Wed 15-May-13 22:28:05

if you think you're at risk, please have the test. Otherwise it will always be there at the back of your mind, worrying you. And I'm sorry if this sounds blunt, but if you say you'd feel doomed knowing for sure, imagine how you'd feel if you were diagnosed with cancer and you knew you could have prevented it. I never checked my breasts because I was scared of finding something, and when I eventually did check aged 39, I was diagnosed with breast cancer which they said had been there for up to 10 years.

invicta Wed 15-May-13 22:34:42

I was gene tested after my sister and I both had breast cancer. It came back negative. Prior to the test, I had a long chat with the gene doctor about it, the implications if you have a positive test etc.

One of the main messages I got from the discussion is that the test can only determine whether you are at risk from one of the two known cancer genes (brac 1 and brac2). It cannot determine whether you are at risk from a cancer gene which has not been detected yet ( the breast cancer genes were only identified relatively recently).

wigglybeezer Wed 15-May-13 22:48:28

You both make good points, shaggy, both my aunts did not go to the doctors until their tumours had broken through the skin! They might have been OK if they had checked and reported them. Invicta, that is why I am thinking about seeking more screening, as it might catch non BRCA cancers too. I only count as high risk if my Dads prostrate cancer is counted as a possible BRCA cancer, which is debatable. You need three second degree relatives to count as high risk.

Trill Wed 15-May-13 22:49:44

If I had any reason to think that I was at risk I woudl get tested.

Knowing is better than not knowing.

wigglybeezer Wed 15-May-13 22:50:54

Sorry, forgot to say sorry about your Dx ladies, I hope you are
OK. It's bad the way worry can make me self obsessed.

invicta Wed 15-May-13 23:11:58

Yes - all fine,

paddyclampo Wed 15-May-13 23:31:13

I've not been tested for BRCA1 or 2 but due to a strong family history i'm having a preventative double mastectomy with immediate reconstruction.

Having watched my mum die an extremely unpleasant death from breast cancer for me it's a no brainer. The catalyst was that I was found to have pre cancer during my yearly mammogram that I have (i'm 38) due to family history.

Ragusa Thu 16-May-13 11:31:59

If it were me, I would definitely have the test. I would want to know and would have no qualms whatsoever about undergoing the mastectomy. Also, if you have the test then surely you will qualify for enhanced screening on the NHS?

Sh1ney Thu 16-May-13 17:37:53

Without doubt I would have tests and without doubt I would have a mastectomy if needed.

LaFlotte Thu 16-May-13 17:57:11

My Mum had breast cancer in her 30's. She was treated and is fine, touch wood, and is now 64.

My Mum is an only child, her Mum died young after an accident so we don't really know her medical history. I am also an only child. So, there's not a lot to go on!!

However, due to my Mum's medical history, I am entitled to screening (mammograms) from the age of 40 on a yearly basis. I am a few years off but actually will feel better when the screening starts.

I would have the genetic screening if I qualified for it on the NHS but it seems I don't.

SparklyStream Fri 17-May-13 21:25:49

I think they've scrapped the offer of screening now?

Abitmorestunned Fri 17-May-13 21:45:43

I'm a father and I've just had the letter to see I've the faulty BRCA2 gene.

A bit stunned really.

LaFlotte Sat 18-May-13 07:37:02

I got my offer of early mammogram screening just a couple of months ago so it is still offered.

Would really like the genetic test but I guess I don't qualify. Wonder if it can be paid for privately and how much it would be.

TeaAndABiscuit Sun 18-Aug-13 12:49:36

I know this is an old thread but I was searching for advice on this. My mum died of breast cancer at 43, her sister had the disease at 52 and survived. Their grandmother died of it (no details) and my paternal grandmother died of it at 41. Would I fall into the category that should be tested?
My father also died of cancer at 47 but that was bowel cancer which I don't think is linked. I am 39.

digerd Mon 19-Aug-13 10:12:46

I saw a TV documentary on a family who had the breast cancer gene.
Only one sister had not had it, but she was tested and did have the gene.

The risks are 20% that she will still NOT develop breast cancer but 80% that she will. She was unsure what to do.

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