If you inherited BRCA1 or BRCA2, what would you do?

[anonymous98]

Asking because I (26) have just been tested for both variants (my father is BRCA2 positive). I'll get the results back in 2-4 weeks.

If positive, the options are:

1. NHS offer yearly breast MRI from age 30 (and recommend breast self-exam at home). I'm wondering if it would be worth paying for private MRIs before age 30.
2. Preventative mastectomy and reconstruction
3. Get ovaries removed after having children (say age 35-40). I would rather have them removed earlier than this, but I know that going into menopause early isn't ideal and/or what if I want to have a family?

Hopefully, I will test negative for any BRCA variants. However, I want to be prepared in case I do test positive. I have terrible health anxiety already and am finding this quite daunting, plus all the news about younger people developing cancer is making me even more paranoid. Part of me just wants to get everything removed "just in case" if positive, but I know that having an oophorectomy would plunge me into premature menopause. Equally, the idea of having a mastectomy is scary, even if it's the best thing to do. I'm single and, as embarrassing as this is to admit, feel like nobody will want me if I have to have all of this stuff done. Am I overreacting?

It’s very tricky to comment unless you are in the same situation.

As you are young I wouldn’t rush into breast surgery without doing lots of research and which type of
mastectomy - there are different degrees.

Ovaries I would have removed as soon as I had finished my family.

Are your chances of inheriting less than 50% as it’s from your Dad rather than Mum?

As PP said, it's hard to comment if you're not in the situation. I think I would opt for the annual mastectomy BUT I would make sure I also got an ultrasound. A friend's mammogram was clear but the cancer was only diagnosed when she had an ultrasound in addition.
There have been cases, in the States, where the women had radical surgery and the BRCA results turned out to have been inaccurate.
If you do test positive, and I hope you don't, just be very careful and get all the information you possibly can.

https://www.curetoday.com/view/two-women-given-the-wrong-brca-results-bound-by-a-blunder

https://www.denverpost.com/2017/10/25/genetic-testing-mistake-breasts-uterus-removal-oregon/

I am perhaps in the minority but I’d go for option 2 and then have ovaries etc removed after dc. But then I’m coming at this as someone who is quite severely disabled and have had lots of surgeries etc to save my life, so I’m not at all worried about having bits taken off me, even my breasts. I’d rather just not have the worry. But I do appreciate others wouldn’t feel the same.

I’m not sure if this helps or not but I’m in a similar-ish position, in that we think there’s a familial gynae cancer gene on my mums side because the amount of cancer going back generations is too much to be coincidence plus they are from a small Island community.

I’m early 30s now and my plan is to have a hysterectomy in my early 40s and pay for private scans etc too.

Annual MAMMOGRAM, not Annual Mastectomy. Goodness me! 😧

Hi OP. I have brca 1 and have had a double mastectomy and will have my fallopian tubes removed in the next few years (Removes risk but no early menopause). Eventually I will have my ovaries removed but not for a while. I have 4 older cousins with the gene too who have all opted for surgery too. It’s a big operation but the recovery for me was straightforward and I am really happy with the reconstruction and the fact I now have a normal level of risk.

Unfortunately it's still 50%

It's okay I understood! 🩷

I did option 1 for 25 years until I was old enough not to be at risk of early breast cancer and was switched to regular age appropriate mammograms. The annual checks together with self exams were enough to ensure I was monitored.

I would do 1 and 3

I just couldn't bring myself to do 2 as a preventative measure

But I have big boobs and they're the one part of my body I like

Im 36 and got diagnosed with breast cancer at 35 so am totally biased.

But I would take the masectomy as fast as possible. The statistics are not in your favour (if you have it) but the surgery reduces your risk by 95%. That’s an incredible number.

Ive had one masectomy and I’m waiting for a second because I want to do everything I can to avoid having another breast cancer. I’ve waited nearly a year before I’m even allowed to discuss going on the bloody waiting list for the second.

the masectomy was the easiest part of my treatment. Chemo is fucking awful. Menopause and the long term view of having that early is also fucking awful. You will survive cancer if you get it and it’s picked up early on your mri but it’s just fucking awful and then you live in the shadow that it might come back elsewhere and then it’s terminal.

if you want children I’d also suggest getting genetic counselling so you can avoid passing on the gene.

@anonymous98 I have been in this EXACT same situation and I’ve had both operations to prevent cancer.

I had a mastectomy in my twenties and an operation to remove my ovaries shortly after. I never suffered with anxiety about it because I knew it had to be done. I had completed my family with 3 DC by the point I found out.

Ask away if you have any questions.

Thank you for posting this. My mum died aged 49 and had the BRCA gene, and I've been debating getting tested for it privately. For now I've told myself if I do get tested and it's positive then I would have any operations available to reduce risk - although that's easier said than done when it's a hypothetical situation. I'm mid 30's now and pregnant with my second child so in a later position in life than you.
Do you mind me asking whether your test was through the NHS or privately done?

Mine was through the NHS as I had proof that my dad had BRCA2. There was a bit of a wait (few months) but we got there in the end

Sorry about your mum 🩷

Thank you for your response. I am so sorry you've had to deal with breast cancer in your 30s. I hope you are doing well now 🩷

My general inclination is to agree with you that a preventative mastectomy is best. I really don't want to have to have breast cancer and some women do unfortunately develop it young.

My only reluctance around the mastectomy is due to a friend having one where honestly the end result was horrific. She’s had the reconstruction work removed which was a battle to get.

I was much older and post DC which makes all these decisions easier tbh.

I've actually got secondary (incurable) breast cancer in my 40s. My treatment put me into medical menopause and I'm really, really struggling with the effects of that. I think if it was me I'd go for a mastectomy.

Food writer Becky Excell had a double mastectomy due to BRAC gene and has written and spoken about it quite extensively so is a great source of information.

https://glutenfreecuppatea.co.uk/2021/04/05/me-vs-brca2-gene-mutation-story/

I have BRCA2. Found out at 25, nearly 20 years ago. Sorry to hear you have this worry. I hope it works out for you. Of 9 cousins in my family generation who have a known carrier parent - only 3 of us have it, so it is possible to beat the odds!

I had the mastectomy in my 20s. All the BRCA positive women in my family got breast cancer under 35 so it felt sensible. I wasn't in a relationship (so wasn't planning on having kids at the time). I did have a reconstruction. Genetic counselling was really helpful.

I went on to have two kids. Didn't BF, obvs.

I'm currently running the menopause gauntlet on the ovaries. I'm probably going to hold out for another year until I'm 46, I've had my fallopian tubes removed already to reduce the risk (I'm in a study, a large proportion of ovarian tumours first appear in the tubes). But I've had a couple of scares lately, so I'm almost ready to let it go and accept what a surgical menopause brings.

I'd recommend getting on studies if you are positive. It tends to qualify you for extra screening (and therefore extra peace of mind).

Would it be okay to ask what happened with your friend? Did they botch the surgery?

@anonymous98yes it did, lumpy, lopsided, implants possibly leaked. She actually shared photos on breast cancer awareness day and it went viral as well”the reality of breast cancer isn’t pink & fluffy”.

Hers was done as part of her cancer treatment and she was well endowed to start with, all factors that may have contributed. She feels much healthier and in less pain since she had the reconstruction work removed.

Thank you, I'll have a read of the article and I do think I'd probably opt for a mastectomy if positive. Sorry you are dealing with health problems - I wish you all the best 🩷

I’ve had breast cancer (not BRCA). In your position I’d have everything off and out. It would be a no brainer for me with such a vast reduction in risk. I’m not minimising the enormity of it of course. I wish you luck and hope you are clear!

2 of my closest friends (sisters) had the rogue genes both late 30s when tested.
Sister 1 happily married and has two children but didn't want anymore so had ovaries removed, a double mastectomy with reconstruction and now takes a gel HRT to manage the menopause. No regrets and is living a healthy and happy life.
Sister 2 had no children but never imagined she would and has been single for a long time. She also had ovaries removed and a double mastectomy with reconstruction however the reconstruction failed and she was very poorly in the immediate period after surgery. She now uses prosthetics (nick named chicken fillets). Uses gel HRT. I don't think she regrets the operation now but did have a tough few months and whilst she's not particularly interested in dating I know if she was the mastectomy and potential reactions to that would give her some anxiety.
Both of my friends are alive and in the most part in good health (Sister 2 has another unconnected illness) and for this I know me and other friends/family are very grateful.

I have the BRCA2 mutation but only found out after I had a lumpectomy after being diagnosed with breast cancer (age 52). It runs through the female side of my family, unfortunately. I then had a bilateral mastectomy (no reconstruction, I wear prostheses) and had my ovaries removed the following year.

Had I been tested in my 20s I would probably have had my ovaries removed after having my children and have had yearly mammograms. As it was, I had yearly mammograms, thank god, as it was when my own triple-negative breast cancer was found.