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Breast Cancer Gene

(15 Posts)
tiredteddy Mon 04-Jul-11 21:47:51

Hi I have just found out that I carry the Brca1 mutation that gives me a greatly increased lifetime risk of developing both breast and ovarian cancer. My head is spinning with all the information and options. Does any one else have this? It would so helpful hear someone else's story...

l4k Mon 04-Jul-11 22:52:45

hello,we are waiting for the results of my mums test,she had breast cancer at 37 but is 62 now and fine.Her family history is bad,5 aunts and 3 cousins all had it youngish.They are only doing the test now because of me really and I'm worried how my mum will take it if it's positive.
What were your reasons for the test?have they told you all the options,like how having your ovaries removed can cut the risk of breast cancer?
This will all depend on your situation,age and have you finished having children of course.
I don't really know what I'll do if mine and mums tests are positive but I wouldn't think it's something that can be decided on quickly.I would get all the information and advice I could and let it sink in for a while.
I'm sorry you are going through this,hope you have someone to talk to at home.

smee Tue 05-Jul-11 10:11:10

Am sure it's unnerving, but maybe try and see it as a positive. A lot of people carry it and never know, but you do, so you can get lots of check ups and regular screenings. That way if anything does start, they'll get it so early it will be treatable.

tiredteddy Tue 05-Jul-11 11:13:33

I am 31 and I have 2 ds . There is a clear history of breast cancer in my family and and I think a distant aunt was tested so then other family members have been informed. My mum discovered that age carried the gene so I got tested. I git my results about 3 weeks ago. My sister was also tested and found out last week that age does not carry the gene. I have gad some counselling and met with a member of the breast team to discuss options regarding both screening and preventative surgery. It has happened quite quickly and I know I need to give it time to sink in. I just can't stop thinking about the options and the pros and cons of each. I don't want to look back in the future and regret the choices I make now.

tiredteddy Tue 05-Jul-11 11:16:15

14K thanks it sounds like you are in a similar situation too with the testing. Knowledge is so powerful I know and I sm glad I got tested as now I can do something fir myself and my family to protect us all. My mum has found it all very hard and feels guilty even though it's just nature.

l4k Thu 07-Jul-11 23:14:29

I hope someone comes along with some experience of this to share with you.Let me know what you're thinking of doing,I might be in you're shoes soon.It really is a good thing to have regular screening ,I've been having that for about 6 years and feel safer for it.
take care.

skewiff Fri 08-Jul-11 11:25:16

This is interesting. My mum died of breast cancer at 45 and my great grandmother also at a younger age.

But when I went to Barts hospital to talk about it with a geniologist (I think he was called) he told me that I could not be tested for the gene and that my mum and great grandma were not enough to suggest it was genetic.

Did you all pay for your test?

l4k Fri 08-Jul-11 15:30:28

No, on NHS.The problem could be that you don't have a living relative to test first .I think that makes testing more difficult but not impossible.I'd ask to be re-refered if you do want to know.
Sorry your mum didn't recover.x

l4k Sat 16-Jul-11 17:59:58

Hi,we were told it would be 6 months for my mums results but I have spoken to the genetic nurse and the results are in and its only been 4 weeks.I'm 95% sure this means its positive.She said mum will get the letter next week with an appointment in August to be told results.Hope my mum doesn't go to pieces,she suffers from depression. Also,will me or my brother or sister have inherited the gene?
Tiredteddy- how are you getting on?

l4k Sun 17-Jul-11 16:46:27

I can't get it out of my mind that our family is soon to find out we have a gene fault and what it will mean for us.
From what I know,I'm expecting it to be BRCA2.
I last had a mammogram 20months ago which found some calcification which they were not worried about after an ultra sound,but now I'm very worried and will ask to have an MRI if I'm positive.
I didn't realize these genes are so rare or so serious untill this year,we could have had this test years ago but thought we were being self indulgent and making a fuss.
Any words of wisdom for me?
I haven't told my mum about the phone call with the nurse.

methodsandmaterials Sun 17-Jul-11 17:09:14

tired, I'm sorry that you're feeling overwhelmed.
I completely understand that you would like to speak to someone that has been through what you are going through. Can I suggest that you also speak to the Cancerhelp (Cancer Research UK) nurses? They are fantastic and will be able to provide you with honest, reliable advice. Their number is 0808 800 4040.

l4k Sun 17-Jul-11 18:14:01

tired-I'm sorry for taking over your thread.
Hope you are ok.
Thinking of you.

smee Mon 18-Jul-11 11:55:43

l4k, sorry you haven't heard yet. And tired teddy, am sorry you are positive. I suppose the only thing that you can do is to try and see it as a good thing. Not sure if this helps or not, but I've had treatment for Breast Cancer, so now know that the earlier they find it, the easier it is to treat and. Being positive for the BRAC gene is obviously not good, but at least you know and can get early screening. Far better to know than not.

skewiff, I was turned down by the Barts team too - they have a scale and you need to reach 15. Both my mother and I have had treatment for BC, but we only reach 12. We're the only women in our respective generations. What's annoyed me is that in some parts of the country they would test at that level. Also that according to the doctor I saw, the test only costs £100. I'm sure it cost more to have him sitting there telling me I couldn't have it, than the actual test would have. hmm

tiredteddy Thu 21-Jul-11 12:51:06

I haven't checked fir ages on this thread so sorry. Had my first MRI scan yesterday and am now panicking as it took ages and the nurse had to retake the last scan twice so I am busy convincing myself that she could see something.

You haven't hijacked at all it's good to share your story. I hope you get negative results for your mum? I was told it is 50% chance of inheriting si you and your brother might inherit however you test would be quicker ad they only have to match your DNA to your mums nit find it from scratch.

I am seriously considering preventative surgery and have been referred to meet with acsurgeon to discuss options

Thanks for reading everyone xx

tiredteddy Thu 21-Jul-11 12:52:25

Methods, thanks for that number x

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