Hi all,
I’m new here and just looking for a bit of reassurance I think, or I’m not sure actually what I’m looking for.
I am in my 30s and recently had a confirmed BRCA2 faulty gene after being referred for a test following my mum’s positive test last year - she has had two bouts of breast cancer with ER positive and triple negative.
When I was originally told the result over the phone I was fairly numb, I think because I expected it to be honest. What surprised me though is that they have said I’m at risk of breast cancer from age 30 when I thought I had a lot more “time” as silly as that sounds.
I received the letter in the post this week and it hit me like a tonne of bricks saying my risk of breast cancer is 88% over my lifetime. I am just worried - worried that it can happen so soon and worried of what I am going to put people in my life through whether that is cancer or a lot of preventative operations.
My head is a constant whirl of getting the surgery, getting it done soon and worrying time may run out - a bit like I’m a time bomb ready to go off.
I am sorry as I know all of this is stupid. My head is just a bit of a ping pong ball at the minute!
Thanks all x
Hi Wolvensam,
It's such a difficult time learning about a bout BRCA mutation, and I'm so sorry to hear of your Mum's fight with 2 rounds of cancer.
You're not alone in how you feel and all I can say is whilst it all may feel overwhelming at the minute, with time and support you can face your fears and make decisions that are right for you in managing your risks.
Everyone is different and one thing to remember is a mutation doesn't mean you have cancer. It's just a really useful piece of information so you can use, to be forewarned is to be forearmed.
I'd give your genetic counsellor a ring and ask for another appointment where you can discuss your risk and explore next steps. Whether that's monitoring/scans in the interim or moving to request preventative surgeries. Under the age of 40 you breast tissue is dense and it's hard for Breast Clinics to really see what's going on, so you may need MRI's and ultrasounds as well as the odd mammogram in order to get a good picture of your breast health.
I was single and hadn't had any children at my time of discovering the BRCA2 mutation in my early to mid 30's. I eventually went ahead with my PBM at the age of 38, I chose to not have nipple sparing and eventually had a tattoo to cover my scars and reclaim my body. I had support from some amazing friends at that time. I've remained single into my 40's and have recently met an amazing partner who fully accepts and loves my body just as it is. I'm pretty sure children aren't on the cards for me, but that's for more reasons than just my BRCA status.
When I dated previous to this I found that sharing early on in chats with potential intimate partners was helpful, and I can't say I met anyone who found the prospect a turn-off. And even if they did, then that's their problem not mine.
Any questions please ask. You're not alone and you're going to be ok xxx
Love and Light
Anne
Hello - it’s such a roller coaster, isn’t it. I hope you’re mom is doing okay- it’s so much to go through.
I’ve got the brca 2 mutation and was diagnosed with grade 3 triple negative - it had spread to my lymph nodes too.
How you’re feeling is perfectly justifiable! It’s a lot to process and knowing what to do and when must be constantly on you mind. There’s no right and wrong but when you are feeling up to it, do as much research as possible. Most medical professionals will suggest risk reducing mastectomies and the salpingo -oophorectomy to remove the fallopian tubes/ovaries. I’ve had a bilateral mastectomy + reconstruction last week and have a referral in place to see a gynaecologist about the salpingo-oophorectomy.
Great Ormond Street provided me with my brca results and went very thoroughly into the suggested courses of action I should consider. I have two brothers and both of them are getting tested for brca off the back of my diagnosis. They both have kids. I sadly got cancer during my IVF journey and have been advised that the IVF journey is probably over for me. All a bit heartbreaking really.
I’ve also invested in a naturopath. Since my diagnosis I’ve been on tailored supplements to support me and moving forward I’ll probably be on b vitamins as these are crucial apparently in ensuring I remain healthy. I really don’t want to do the other surgery so want to work with a naturopath and optimise my body! Time will tell.
you’ve got a lot to think about but I encourage you to try not to spiral - it’s hard, I know. get all the information you can on your options. Then it’s 100% your choice/decision to make. Sending you the biggest hug. 
