Diagnosed BRCA2 several years ago - thinking about further surgery

I was told I had BRCA2 several years ago after my Mum and Auntie both suffered breast cancer (my Mum twice - mastectomy and chemo both times), I took the decision 2 years ago to have full hysterectomy and ovaries removed as a preventative measure but couldnt even contemplate the thought of a double mastectomy.
However with this being in the public eye much more recently its really made me think that maybe Ive not been thinking about this enough or taking it seriously enough. Ive always been determined not to let it take it over my life (I am married with 4 children and have a full time job) and have refused all offers of counselling. I have regular mammograms and MRI scans and have always been confident enough with this until now. Dont know whether its that at 43 im getting older and thinking that it gets more likely to happen or what but I find that Im thinking about it more and more lately and find that its beginning to affect my daily life. I havent really got anybody I can talk to as my Mum just gets upset and feels guilty as she says its her fault, my hubby is lovely but bless him just doesnt understand and I dont like to burden my friends with it as none of them really know anything about it or understand it anyway.
Can anybody help? I dont really know what I want, I think I just want to be able to moan a bit and talk to people both who have decided to go ahead with mastectomy and people who have taken the same road as me and just hoped for the best as I am feeling very confused right now and just dont know where to turn. The thought of the operation terrifies me I’ll be honest and how I will feel about my body afterwards but the thought of getting cancer terrifies me more.
Any comments or advice gratefully accepted.

Hello Lois,
I dont know much about this myself, but I do know of the National Hereditary Breast Cancer Helpline run by Wendy Watson and her daughter Becky Measures who is a DJ on Peak FM Radio in Chesterfield.
The helpline number is 01629 813000
They have both had a bi lateral mx to prevent cancer as this gene is in their family so I think this would be a good place to get advice. You can also check online but I think a phone call may be best as you can chat things through and ask as many questions as you may have.
Hope you come to a decision that you are happy with. Sending you a big. Love Tracy xxx

Hi Lois,
Like you, I have a strong family history of breast cancer (and also ovarian). I’ve just taken the decision to have risk-reducing bilateral oophorectomy and will follow that with bilateral mastectomy. It’s scarey. I’m 46 and pre-menopausal. I have a daughter and want to ensure I’m around for her. I feel like the estrogen in my body is a ticking bomb. It has taken me six months to decide to go ahead with surgery. I found this website/community today whilst researching my surgery options. I wish you lots of luck coming to your decision.
I think what finally made me decide was the thought of impending menopause. I think that potentially it’s such a dangerous time, but that’s just my opinion.
Look after yourself.
Deb xx

Hi Lois

i think its a hard decision but only you can make it… i have had BC 3 times and brca2 pos, but i havent had bilat Mx just had lumpectomy each time. i did have a full hysterectomy and ovaries out 2 years ago age 42. i had bc at 37, 40 and 43 and like you i have regular mammo and mri. i would prob have the bilat mx if i got BC again.

i know some folk think im mental not to have the surgery but other folk think im mental to even contemplate it,so it has to be something you can live with whatever choice you make.

my breast surgeon is very pro breast conserving surgery and although he knows im brca 2 he says theres no rush for me to have double mx as i have had treatment to both breasts, however my plastic surgeon was not in agreement and was keen for me to have mastectomies sooner saying if id consider surgery after BC, then maybe i should consider it before BC too.

i know im not much help, but wendy watsons website and helpline is very good xxx

Hi Lois,I had double MX after finding I carried brca 1 gene and also had sequence change in brca2.but this was only found AFTER I had already had lumpectomy for BC.My 28 yr old daughter,also tested positive for barca 1 and had double MX with recon last July.She is very happy with results and didn’t think twice about having op but everyone is different and it is an enormous decision,whichever route you decide to take.Good luck with whatever you decide.
Love Di.x

Thanks very much, I will certainly give them a ring, I’ll let you know x
I think my problem is that im just confused, i thought I had done enough when I had the hysterectomy and oophrectomy and felt much safer after that and thankfully my family was complete but lately ive been thinking about it more and more.
My mum has had BC and had mastectomy with reconstruction both times but she has often said that if she had known it was coming again she would have had them both done the first time rather than have to go through chemo and the fear all over again.
Sounds daft too. but im also worried about recovery time, i only get sick pay for a couple of weeks and thats just another added stress.
Thanks so much for being so open and honest though, it helps so much knowing that other people are there who know what its like to be in my shoes.

Hello Lois,
I am 46 yo. Have been diagnosed with breast cancer 3 years ago- 1st stage, underwent lumpectomy, chemo and radio. Have extansive history of breast cancer among my mothers relatives. After treatments found out that I am BRCA positive. After all I have been through had no doubts and went through the preventative double mastectomy. The decision was not hard, but the surgeries went wrong and after a year of 4 surgeries and set backs, still do not have a good result. Trying to look at the bigger picture and grateful that I am fit otherwise.
Anybody who want to know about the double mastectomy with reconstruction contact me, will be happy to share my experience.