Yesterday myself and my sister found out we have inherited the BRCA 2 gene from our father. Why did we get tested? Well beginning of 2012 my cousin (Fathers brother’s younger daughter) was dianosged with Breast cancer at the age of 32… Bit of shock but ok we thought - strong family we can support eachother, she had a double masctomy in the summer of 2012, and is recovering. Just before xmas 2012 we was told my other cousin (her sister) was diagnosed with breast cancer too. Scared now.
My dad had had the genetice test in June 2012, we was offered it but declined as we didnt want to become a walking time bomb. Until we found out about our other cousin then we thought ok, we must.
We went to St. Thomas’ yesterday and got the dreaded news, didnt really sink in till now… What does this mean for us? Im 23, my sister 24… This is going to affect our lives big time… they say woman with the BRAC 2 gene increase their risk of getting breast cancer when they turn 30… We dont have children, not married… our lives are now like a ticking time bomb of when are we going to be hit by this dreading cancer… my mind is all over the place and just need someone to talk to 
Dear jgrillo6190
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Janet
BCC Moderator
Hi jgrillo,you have been very unlucky to have both inherited the gene.Both of my daughters were tested after I was positive for brca1 and my eldest at age 30 was negative but my younger daughter aged 28 was positive.She had a preventative double mastectomy last july aged 28 and will have her ovaries removed at 35.But,this was after seeing a counsellor on 3 occasions and talking it through in great detail.There are other alternatives such as regular testing but you really need to talk to the experts.You are still young and there may be even more alternatives by the time you both reach the grand old age of 30,good luck and try not to worry too much just yet,get as much information as you can
best wishes,Di.x
Hi,
I’m sorry to hear you have inherited a mutation of the BRCA 2 gene, its a big shock when you get the news even if you thought you were prepared for it. I think you need to speak to a genetic counsellor as you quite rightly have many concerns and questions. You refer to yourself as a ‘ticking time bomb waiting for this dreadful disease’. This isn’t necessarily the case; I have 3 siblings all of whom have a mutation of the BRCA 2 gene, none of them have had cancer, only me and that was nearly 9 years ago and today I am fit and well. Not everybody with a mutation will get cancer, there are many different mutations of the BRCA 2 gene and each vary in risk factor. I suggest you make a list of all the questions and concerns that you have and book an appointment with a counsellor and discuss your personal risks and what screening is available to you.
Hope this helps, good luck x
Hi JGrillo
its a shock to find out you carry the gene change and you ahve only just found out so give it a little while to sink in… carry a mutation doesnt mean you will definitely get cancer… just like not having a gene doesnt mean you wont.
it might be a good idea to discuss it some more with your genetics team or a psychologist… often one is attached to genetics.
you might find brca unbrella or the FB page brca sisterhood helpful as its full of young women in a similar situation.
i have BRCA 2 but my 21 year old daughter doesnt want tested, well not at the moment anyway.
i inherited my mutation from my dad too and have had BC three times, but we have no more BC in my family and my dad is well… so far just he and i are know to carry our mutation in the family… my sis doesnt and his brotehr doesnt.
it is a bit of a no-mans land right now and im sure your emotions are in turmoil, but when you are able to absorb the information and look at your options things may become a lttle easier to cope with.
screening normally starts from age 30 with mammo every other year and annual MRI of the breast, but some women chose to have surgery to remove their breast tissue… this doesnt suit everybody but it is an option.
i was 37 when i was diagnosed the first time so for my daughter i feel we still have time on our side before she needs to make any major decisons.
good luck xxx
Hi Jgrillo,
Im sorry that at such a young age you are faced with this dilema.
I was diagnosed on 14th September, and after 2 lumpectomies with no clear margins I had a mastectomy 20th dec 2012.
I am grateful that I am cancer free now, and to ensure I remain cancer free I start chemo this Thursday.
I am 48 and cannot imagine being your young age and having to make such a decision.
Its like a roll of the dice, a gamble, the unknown what you are faced with but, what I will say is this ‘thank god for research’.
How wonderful that they have found a test to give so many women the ‘heads up’,.and empower them to make a ‘prevention’ choice rather than a ‘cure’ choice.
Now you wil think I’m this happy clappy do gooder that is older and has had a family etc, but I wanted to tell you that I couldn’t imagine being you making a ‘could happen to me’ choice, but after what I have been through I wish that maybe I had been pre- warned so that I wouldn’t have to endure 3 lots of surgery, and the fear of chemo.
I had this conversation with my niece who is 20 and I said could she make the decision if she was BRCA and she said 'absolutely!I admired her quick no thinking response, because I’m not brave and would struggle, but she reckons its a no brainer. I totally Was shocked that so young she could see The benefits of the test, but as I say you must find a good surgeon to ansa all your questions and then you can make an informed choice rather than a scared witless one. Another hurdle is body image, I’m sure you are petrified of being disfigured…me too!..but look at the surgery they perform these days. The plastic surgeons are very proud of theiWork and will ensure you look the best you possibly can.
You will get great support on this site, I hope you didn’t find my comment inappropriate, but I welcome the news that many young ladies like you and your sister are being protected by the pioneering research that we are seeing with BC over the past 10 years.
I hope you are able to make the right decision for you.
Maggie x
I’m in the same place as OP. I’m 23 (turning 24 in August) and my mom was diagnosed with breast cancer about a year ago. I’m currently living in rural Japan on a 2-year program, but on a visit home last summer I got tested and turns out I inherited the BRCA2 mutation with 84% risk BC and 27% ovarian. Because I’m currently in Japan, my doctor told me to just spend sometime doing research, but not to get myself too worked up over it because I was still young. But she (and my mom) both sort of mentioned that maybe I shouldn’t wait too long to start a family. The program I’m currently on ends this upcoming August (the week of my birthday) and then I’m moving back to the U.S.
I’m single and facing a turning point in my life (aka the first time I’ll be entering the job market since graduating University). When I got my results my knee-jerk reaction was ‘get them off of me!’ and immediately I started asking about preventative double MX. Everyone around me said I was being a little extreme, but I listened to my doctor and have spent the past year casually reading about BC. I’ve found myself neck-deep in articles calling all these women getting preventative mastectomies ‘brave’ and ‘heroes’ and the Angelina Jolie article that came out today just sort of triggered a mental panic attack.
My sister and mom have both been telling me that I’m too young and still have time before I need to make a decision. That surgery is going to change my life. And I understand their concern, but in all honesty my thinking is ‘then shouldn’t I do it now so I can start adjusting immediately?’
(sorry for the monster post!)
Hi all,
although I have a brca1 mutation and not a brca2 mutation, just wanted to add some words of encouragement to those getting their heads round a very recent diagnosis.
I was 41 when I found out I had a brca1 mutation, I was very shocked and upset. I inherited the mutation from my father, and as I did not grow up with him, did not know the extent of our family history. To be honest, it felt like a cancer diagnosis all over again ( I was diagnosed 2 years after having breast cancer). While I agree with Maggie, it is amazing to be able to have a test which warns you of your risk, and means you can manage that risk, don’t beat yourself up if you don’t feel that positive. Its early days for you. Its like grief, you have to go through each emotion step by step. Give yourself time to take in the information. Don’t panic. Remember, you have not been diagnosed with cancer and there is no urgency for you to ‘do’ anything. Its ont thing to think hypothetically about surgery, quite another to embark on it. While I think its helpful for public figures to help raise awareness, we are not Angelina Jolies! You are also brave and strong and beautiful. You have to do what is right for you and it takes time to work out what that is.
As I have had breast cancer twice, not surprisingly, I always feel I have to bite my tongue when people remind us that not everyone will develop cancer. But someone has to be in that 15 per cent!
I have come to a point now where I feel that information is power - finding out I had a mutation meant that I could make a choice and in the end my bilateral mastecomies meant the early discovery of a seond tumour. Probably saving my life. The Angelina Jolie coverage has made me a bit sad that I did not know sooner of my own risk and I had to go through treatment twice. But, I take some consolation in the fact that as a result of my experience, my sisters and daughter (brca1 is thought to be alot less risky for men) will, I hope, have access to interventions to help them manage their risk.
Thinking of you and sending lots of cyber support.
Rattles
I’m with rattles (thought yr post was very moving btw). I found the 8 week period after brca diagnosis particularly painful, shocking and difficult. I think I spent most of the first 2/3 weeks crying. It is very hard in the early days And I think rattles is right, there are a number of emotions you have to work thru at yr own pace. It’s that dreaded ‘time’ cliche I’m afraid.
Now, a few months on, I’m more resigned to the news and am coping a lot better. Talking to my children about the gene mutation (14, 12 and 8) was very hard, but quite illuminating. We waited until my husband and I had digested the news and were able to focus on the positives of this diagnosis, so we passed on the right ‘vibes’ to them. My son in particular was amazing and summed it up ‘this knowledge gives our family a power now, against cancer, that we didn’t have before, this news is good news and will help doctors keep us as safe as they can’. owlish I’d been that mature at 12.
I was diagnosed with bc at 41 last year (chemo, wle and rads) and found out I carried brca1 gene about 8 weeks after finishing treatment. Yesterday I had risk reducing surgery to remove my ovaries and Fallopian tubes (to reduce ovarian cancer risk) and I’m going to consider bilateral risk reducing mastectomies next year after I’ve finished my OU degree, which I had to put in hold last year. to b honest, I’m still coming to terms with the fact I had breast cancer last year, let alone a brca1 carrier. So, I’m going to spend time getting over the surgery I had yesterday, concentrate on my studies whilst also coming to terms with whether to - and how to - remove my breasts.
Having a brca diagnosis is a terrible shock and it has these awful tentacles that spread out and affect all the family u love so much - but if I’d known there was a brca gene fault in my family, it is likely that it wud have been picked up a lot earlier and Iat have avoided chemo.
it is difficult, but hang on in there