BRCA1 positive decisions

Hi, I couldn't just read and run so firstly wanted to say hi and thanks for sharing your situation. 

Mine is slightly different, as I found out I had the BRCA1 mutation when I was 31 and I already had 2 children. So yes, this means that my children have a 50% chance of also having the dreaded gene. They are now 16 and nearly 14 and I'm dreading the day I have to tell them both that there is this massive risk to them and their futures. 

When I found out about my risk, I decided to have a double mastectomy with immediate reconstruction when I was 32 and I'm now waiting to have my ovaries removed, hopefully later this year at age 36. 

Having this gene is empowering, as my mum never got given this knowledge and she lost her battle with ovarian cancer 6 years ago in April, just like many thousands of other women. But having this knowledge is also bloody scary! 

What is the right option to go for? It's different for each person, but that doesn't make it any less scary or helpful. 

Maybe speaking to the doctors and nurses again about your options might help? The info you were given, is that recently, or when you first found out about the BRCA gene? Information and guidance that the NHS give can change rapidly, which I've found myself and different NHS Trusts offer different options as well. For example - Guys in London won't take my ovaries until I'm 40, but Maidstone will do it now at 36. 

Also, I think trusting your instincts is best. Do what is best for you, not anyone else. Don't feel pushed into something if you feel uneasy about it. Surgery isn't for everyone and I know ladies that are well into their 50's now and still haven't had a mastectomy and are under surveillance instead. It's what works best for them. 

Good luck with whatever you decide :) x

Hey, I'm turning 30 this Saturday, I have a partner but I don't have children, I found out I had the gene in December last year, I had my 1st appointment a week ago and they are referring me for the IVF part even though I'm really not ready for children.

I'm so nervous with so many options, I'm having a double mastectomy and will need implants, but with covid I have to have 2 operations which I wasn't planning for, but there's so much to take in and think about, don't rush into anything, I have to make my next appointment to confirm the surgery myself as I want to agree and think about it myself 

I hope everything goes well for you x

Hi all, I also have braca 1 (had BC 3 times, 17 years ago, 14 years ago and again just before Christmas - first cancer responded to tomoxifen and didn't recur, 2nd is triple negative so doesn't respond to tomox, and 3rd is spread to lymphs from end one). For first also had surgery/chemo/radio, 2nd just chemo and same again for 3rd).  Hevski I know what you mean about telling children.  I didn't know I had braca until 2nd cancer, when my daughter was 20 and pregnant - I told her straight away as the geanetatist said I should so she could make decisions and arranged for a counselling session at the hospital for her to attend.  She has a lovely little boy and has just had a baby girl. She didn't want to change her life choices due to BRACA but she has breast fed both as long as possible as this helps to avoid braca and eats really healthily and exercises all of which help.  She will have mastectomy in early 30's and waiting to see what research says about overies as more worried about effects of having them removed rather than mastectomy.  I told my son who was then 16 but he hasn't been tested - seems less of an issue at moment but he may be a carrier so an issue if he decides to have children - at moment he's loving life and not thinking about settlind down so not really worrying but will have to face it at some point so will go for test and councelling when ready.  I think they need to know before having children and I quess to be fair to partners, before they decide to settle down.  It's very difficult and I feel quilty for passing it on - but we pass alsorts on through genes, so at least we know about this and can inform our children and make informed decisions. For young people like VicEva it must be so difficult, my neice also has it (tested because of me and her dad/my brother got tested and has it and passed on to my neice) and she is 25 and single and is going through same issues as VicEva, I almost feel its better for my daughter as she didn't know till had a son and settled so decision taken from her - easier! but she still went on to have another child who she will prepare for consequences when ready.  It's so hard!  Hope that helps - but probably doesn't.

Hi, the thing with this gene is we don’t know when or if we will develop any cancers even though we are at high risk, I have just found out I’m Brca 1 I’m 42 and I have an 8 year old, I know how you feel in the way of “it’s all you think about” and you are very young to have to make decisions like these too, all I will say is ovarian cancer hasn’t any screening and isn’t always easy to diagnose,

yes you will have 50/50% chance of passing it to your child, but that is no one else’s decision but yours, I obviously didn’t know I had, but a question to ask myself, would I of not had my son knowing I had the gene, I wouldn’t change having him for nothing.