does anybody know anybody or had a mastectomy themselves because of a big family history of BC?

Hi

I was diagnosed with BC june this yr at the age of 22. My mum had it and died when she was 26 and died at 27, both my nannas had it and both of my graet granmothers also had it!

I have 6 aunties 3 on my mums side and 3 on my dads and none of them have had it. I had a gene test in sept this year and my sis and brother are going to get tested when i get the results back…but the doctors are urging my sister to get a double mast as they say that she will probably get it, she is right in between the ages of what my mum and i were when we got it so its really scary! I had a doble mastectomy and that was quite difficult but i know that its saved my life so im not too bothered with it, but am so scared that she hasnt got the gene and she is going to go through something massive as big as a doublemastectomy. Its easier for me but if you have never cad cancer whay have the opp if your not sure that you will ever get it? I just feel for her what a decision to have to make!

Anyones imput would be brill

Thanks

xxxx

Hi Mairead1,

If either yourself or your sister want to talk to someone in confidence about this, then please do phone the helpline who will be able to talk to you and support you through this. The staff are either breast care nurses or people who have personal experience of breast care issues, they’re here to help.

Calls to the helpline are free, lines open Mon - Fri 9am - 5pm and Saturday 9am - 2pm, 0808 800 6000

Hope this helps.

Kind regards,
Jo, Facilitator

hi mairead, i am having a double mastectomy in the next few weeks as i have faulty gene, if a gene was not found i would still have op due to very strong family history. everyone is different but for me with odds of upto 85% BC i cant gamble with those odds and i would rather advice people i prevented BC albeit having a mastectomy but for me it’s better than telling people i have cancer. no it’s not a definate i will get BC but i have 2 kids and i will worry myself sick for the fear of cancer hanging over me. if my risks were only slightly reduced i would def reconsider but not with 85%. do you mind if i ask if you were told you had a faulty gene and odds were upto 85% risk of BC what you would have done? that may be hard to answer because as you say we wont know until it happens. this is a really decision and it will be also for your sister. sometimes i cant get my head around going for a mastectomy with no cancer however i have seen too many loved ones diagnosed with cancer and some lose their fight and i hope i can prevent this possible fate for myself xx

Hi
I had to make a similar decision to your sister last year and I have since had a double mastectomy to reduce risk. My mum (the only survivor) was tested but did not carry the gene fault, however I was graded a high risk on family history alone. I am now 6 months on and sometimes forget I have even had it done. I did not have a known gene fault to base my decision on but I decided to have it done rather than to regret not having it.

It is a very tough decision to make. I hope you are well, you are so young to be facing this.

Jackie xx

Hi Mariead
I have the gene, and had both operations by my 40th birthday. I havent had cancer, but my sister died of it at 42. Even knowing I had the gene didnt make it an easy decision to make, tho knowing I had an 85% risk of cancer helped.
No one knows for certain what is around the corner. Many women have the operation(s) based on just family history alone, I think many of them assume that they may have a gene that hasnt yet been found.
Your sister will have to make her own decision, based on what she knows at the time. I decided that no matter what happened (ie a miracle cure in 2 years time!) I would have no regrets having the op, because I made the best decision I could based on what I knew at the time. I still know that was right for me - my fear of cancer was greater than anything else.
I am not sure what I would have done had I not got the gene, as I felt it sort of left me no choice - but with hindsight, I hope I would have still had the operations, because my relief at lowering my risk is very tangible.
Best wishes to you and your sister.

Thank you all for your imput, I think that she is going to wait until her test results, but because me and my mum and my grandparents got cancer so young (we were all in our 20’s on both sides) thats why they are saying that they will do the opp without waiting for the test results.

I will show my sister what everybody has written, but i think that she may have already made a decision!

Hope everyone keeps well and has a great new year! Heres hoping 2009 is a better one :slight_smile:

xx

hi mairead, i also hope you have a better 2009 and look after yourself also. love lainey xxx