Hi all, I am new to this site and not posted before. My Mum has brca1, she has had breast cancer and now in hospital with advanced ovarian cancer. I have seen the genetic counseller today and had the blood test for brca1. I feel I have made the right decision but at 28 years old I am worried about the future. I already have a duaghter and would love another child but the counseller mentioned about IVF and about screening embroys for the gene, I know this is a very new thing but does anyone have any experience of this? I would be worried about potentially ‘saving’ one of my children and then living with the guilt of my daughter possibly having brca1. I feel so confused and don’t feel like I have anyone to talk to about it x
Hi Emmy
I think the worst thing about being tested for a genetic problem is the waiting for the test results. I have just been tested for another type of genetic cancer and it is driving me crazy waiting. Until you get the results, you can’t do anything except worry like mad and your mind races away with you. First of all, you don’t know that you will test positive. If you do, your daughter may not test positive. Even if she does have the gene, you mustn’t feel guilty about passing it on - how on Earth could you know? I think the counsellor has given you too much to think about all at once - I know they did with me and it just confused me. Talking about future children and IVF and embryo screening is something that you should put out of your head at the moment. If you test positive, you can deal with that at later date, but you don’t need to torment yourself with that now. You sound like you could do with more information regarding the test - why don’t you phone one of the cancer helplines tomorrow. Please try not to think too far ahead as it may all be unecessary and save your energy to enjoy your daughter and be with your mum for now.
Emmy, I don’t know how much further you have got with this. I think the other respondee is right,you didn’t know when your daughter was born, most of us don’t. I was in my late 30’s before I realsied there was possibly a hereditary breast cancer in my family.
Remember because you inherit the gene still doesn’t mean you get the cancer.
maybe the genetic counsellor was trying to reassure you that there was something you could do to lessen the risk of inhereting a faulty gene. I know personally I went through a spell of feeling it was all inevitable and there was nothing I could do and everything was hopeless. I’m not sure what made that any better, but something did.
Best wishes Emmy
Hi Emma
I am BRCA1 positive. I know how worried you are feeling. I created a social network and support group just for BRCA+ people as the care system for dealing with genetic cancer can be complicated.
We have 84 members who are either BRCA1 or BRCA2 - blogs, photos, stories an advice. BRCA umbrella…come and visit us.
Screening embryos? I looked at this but our chances of success are very slim but the younger you are the better the odds at success. It it is a way forward IF you have the gene and want to have children you know will not have the gene. There is so much information to digest, it can be overwhelming.
I planned what I would do if my results were positive before I got my results. It helped me prepare for the worst. My hubby says to not plan ahead, but we are all different. If you need to look at lots of information and talk to people, you do what you feel you need. I am 3 weeks away from preventative surgery and I am glad but it has been a long haul.
I am winning the race at the moment. I have 8 known women in my family with breast cancer - deceased and survivors - I am glad to know that I have a genetic mutation - I can do something.
Come and find us. It operates a little like Facebook and is a private network.
Well, keep your feet on the ground and if you want to talk more, just shout. Always here to listen and help.
Wishing you negative results! x
Hi ladies, thanks for all your comments and lovely messages. Today is the day that I find out, 4.30pm to be exact! Was ok until just now, just starting feeling sick and nervous and burst out crying a second ago, oh well will just have to see what they say. I have planned if it is negative or positive so either way I feel prepared! I will let you all know what the result is x