Preventative Double Mastectomy BRCA 2

[user276]

BRCA 2 Mum in London UK

Had my genetic testing done as my beautiful Mum found out she was a carrier when she had her own test. She is currently diagnosed with stage 4 gastric cancer.

I am 28 with 2 young children ( both under 5) and had my positive result for BRCA 2 a few weeks ago. I am based near London, UK and have been referred for the yearly breast MRI but have also opted to speak to the surgeons about the preventative double mastectomy.

I wanted to see if anyone on this group is under the care of the Royal Surrey Hospital and could share their experience please. I would be so grateful.

Also another questions for those with young children, how did you find having the op as I have read it’s a long recovery. Some people have said to get the op when my children are a lot older but with what I am currently going through with my Mum I don’t want to put my children through the same thing.

Thanks for reading and any comments 🫶🏻

I am sorry to hear this. I have had the op with a diep flap at the marsden. Our daughter was 7 at the time. I took 3 months off work with a phased return. This was nine years ago. It takes a while to feel normal again but you get there. Good luck

I am due to have a double M any day now. I am 30s with 1 and 3 YO. The recovery is absolutely terrifying me because of my little ones but I’ve got no other option, so gotta go with it.

you do what you need to, to get by!

Single delayed DIEP & reduction on good side - 4 nights in hospital, first few days pretty brutal, not in a painful way.
Was out and about day 10 walking and fish n chips by the seaside! Had 3 months off work, driving 5 weeks after op. You will need more help for at least 2 weeks if no kids. I can’t comment on with kids sorry

Also brca2 but I haven't had the preventative mastectomy and not sure if I will. I'm having ovaries removed next month (unless I chicken out).
I don't have any advice but wanted to say hi because it's nice to find other women with BRCA mutation here 👋
I recommend looking at BRCA Chat (website and insta). They regularly have events where you can meet other women in the same boat.
I also recommend joining a Facebook group. I'm in one that's really active. It's a good place to ask questions and vent.
Good luck !

Hi Please can anyone on this chat recommend a brca2 Facebook chat? I have just been confirmed as being BRCA2 positive.

Sorry to hear that @underthehawthorntree . It's a lot to take in.
There are loads of Facebook groups but the only one I have experience of is BRCA Support UK. I find it helpful. facebook.com/groups/25128230591/

It really is so much to take in. I have three young children and I'm devastated by how this will affect their lives. At least I had had my children before I found out so was able to make my choices freely- but their lives will be forever blighted by this. I'm so devastated for them.

The main thing is, are you having a reconstruction or not? I assume not, or you would have said. I have had a double mastectomy (due to cancer) and it was a doddle physically. I was back at work after two weeks. But I didn’t have a reconstruction of any sort. I was offered, but rejected it after a consultation with the reconstruction specialist.

It is a lot, for sure. But I don’t think your kids' lives will be blighted. They may not have the gene. Even if they do, there are so many advances in cancer research that by the time they're old enough to get tested, it may be far less of a big deal. Better diagnostic tests, new vaccines, better treatments. I honestly think my DD will have better choices than I do.

@WhereAreWeNowI've been doing some research and apparently that's not where research is headed and due to the number of cells which are affected by brca2 (millions and billions) the focus wouldn't be on cure of the faulty gene it would just be about better cancer treatment options and preventative care. And whilst I know it's 50/50 with inheriting it- all the women in my family have inherited it. So I'm not feeling very positive about it right now.

Apologies I never actually mentioned - I will be having a reconstruction and after speaking with the surgeons / breast nurses I think I am leaning more towards the DIEP flap but with 2 young children and my mum being so poorly I don’t think it’s something I can consider at the moment although I just wanted my breast gone as my risk will be reduced by 97%!!!