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?

Sorry to hear you also have the mutation. Keep positive, you have many options - see it like an early warning system that others unfortunately don’t get.

Sorry to hear that @anonymous98
There are some good Facebook groups. Personally I've found it useful to lurk on/join as many forums as possible because the diagnosis made me feel quite isolated. It's good to be in contact with others in the same boat.
As @Ladygaggia says, you've got options and you're in a good position to take control.
Maybe we should have a little BRCA board/thread on MN.

Sorry to hear that it’s not an easy outcome to deal with. Glad you like the counsellor, that will certainly help.

Thanks everyone. I am weirdly calm but I feel very spaced out. Think I am still processing.

Remember, nothing has really changed in your health except your knowledge has increased. And as my cancer nurse tells me knowledge is power. Good luck x

I was part of a national testing programme for this recently so gave it some thought and I would have the mastectomy.

I have always wanted a breast reduction so that may have made it an easier decision!

I'm waiting on BRCA test results as well so have considered this - my aunt and grandmother both died of it, but on my father's side. However I am Ashkenazi Jewish and still at higher risk because of that potentially.

I'm almost more concerned about the likelihood of overian cancer than breast cancer, as that can be so symptom-free. Certainly if I have BRCA1 or maybe even 2 I'd go for ovary removal, as I'm 47 and if all they can do now is potentially kill me, might as well be done with them! Would consider mastectomy with BRCA1 - I'm not someone who would be utterly devasted to lose her boobs. But overally I'd lean towards more mammograms perhaps.

I'm so sorry you got this result.

I have BRCA1. I had triple negative breast cancer (a very aggressive cancer) and at the time, was recommended lumpectomy, chemo and radiotherapy. When I found out my BRCA status, I had total hysterectomy and later double mastectomy and reconstruction. Hysterectomy, because BRCA1 means an increased risk of uterine cancer and I just wanted to maximise my chances of survival.

I've very glad I did both and am happy with both choices. It meant that I could reduce the amount I worried.

So sorry you have to deal with this, OP.

My thinking would be 2 and 3 once I’d had kids. My mum died of breast cancer and I would hate my own children to lose me to the same if there’s a way I could really reduce my risk of it, so I would be of the ‘get rid of it’ school of thought. Breasts can be reconstructed, your life can’t.

But it’s such a personal thing, there’s no right answer. And you’re 13 years younger than me, so I am at a different life stage to you, I have a husband and kids already so I don’t have that extra element to consider. At this point of life I am focused on being around for my kids, but perhaps my outlook would be different if I was still looking for a partner and a lot younger.

I will say that breast reconstructions are very good now, and I would hope that given it would be a prophylactic removal that they would be able to get a really nice result for you if you did decide to do that.

I hope you have some support from family and friends and medical professionals to help you talk it through. There’s no general right answer here but there will be a right answer for you so focus on finding that. Lists of pros and cons are always helpful for this type of stuff I think!

Sorry to hear that, OP

Nothing. I would prefer to take my chances. But then I wouldn't have had the test in the first place.
That may not be helpful, OP, but I think the point is that we can waste our lives stressing about stuff that may never happen. And, in the process, we miss out on just enjoying life.

I’m sorry op, that’s tough. My friend had 2/, then a few years later after she had kids, she had 3/. I’m in awe of her strength actually, although her view defo is she had no choice. Her mum died in her thirties when my friend was young. A very personal and difficult decision op, I hope you get all the support you need.

@anonymous98 if you haven't already found BRCA Chat, I really recommend them. They've got an online talk coming up for people who've recently found out about their brca gene. https://brcachat.com/event/online-talk/

They also have in person meet ups.

I Have brca2. I had a mastectomy and reconstruction at 27. I will have my ovaries out next year at 40. I have two children, now 9 and 4.

Hi everyone, thought I would provide a quick update.

Met with my genetic counseller last week, who told me that I have a 63% lifetime risk of breast cancer and a 14% lifetime risk of ovarian cancer. I also have a 5% risk of getting breast cancer before I'm 40. That information made me feel a bit shit, if I'm honest, although I did ask for it. The good news is that I am a healthy weight, fairly active and I've never smoked and don't drink much, which does help.

She talked me through the various options (screening and surgeries). The NHS is apparently not going to screen me for breast cancer until I am 30, which I am not thrilled by. Annoyingly, if I were in England, I would be getting screened from age 25, but NHS Scotland says differently. I am nearly 27, so that means I could have 3 years to wait for a breast MRI. I think I will have to go private, as I am not sure I can cope with no screening and will be constantly worrying. And yes, while the risk of a woman in her late 20s getting BC is low, it's not low enough for me to not want to be screened.

The bad news on the ovarian front is that there is NO SCREENING AT ALL. That worries me as ovarian cancer symptoms are apparently vague until the later stages. Again, may investigate the private sector for this.

I can theoretically get a preventative mastectomy whenever I want to, subject to the waiting list and approval from a psychologist. While part of me thinks I should just push for this, tbh I am wavering for several reasons. I don't particularly want to cut off parts of my body unless I have to. I'm also single and yes, that is probably partly why I'm wavering too. If I were already settled, I'd probably go for it asap. Is that stupid? Probably.

As for oorphrectomy (spelling?), that isn't recommended until I am 40/am done having children because it would plunge me into premature menopause. Fun.

Overall, I'm feeling a bit overwhelmed by info. I did ask for the facts and I received them.

I’m disappointed that the screening won’t start until 30, seems ridiculous.

It’s also very frustrating that that the situation around screening for ovarian cancer hasn’t progressed in 8 years.

It's made me quite angry, honestly. Like someone at NHS Scotland crunched the numbers and decided it wasn't worth funding screening for women under 30, even if we have inherited an incredibly high risk of breast cancer. Yes, BRCA mutations are rare, and young women getting breast cancer is rare, but it can happen.

Agree re: ovarian cancer screening. I know the CA125 blood test and ultrasound isn't perfect, but I'd take that over no screening at all.

I got cancer at 35. I have a different gene to BRAC, not as “bad” but obviously still bad enough to have given me cancer already!

my sister isn’t entitled to screening until she’s 40. That’s infuriating to me.,

I have cancer.
If I could go back in time and had been offered the option to have anything removed which was not 100% essential to my life in order to avoid cancer I would have definitely told the surgeon to book me in asap.
Cancer is awful beyond words. Even if treated successfully then the rest of your life is spent holding your breath worrying each day about the minutest symptom or change that it might be back again.
Don’t risk it.

I'm sorry to hear this OP, I feel for you.
My niece (only 11 at the moment) will face the same choices when she grows up, she recently lost her mum to breast cancer aged 43 and it has been devastating. The cancer her mum had (BRCA) was very aggressive. I imagine she will opt for testing when she's old enough and then take it from there.
I wish you all the best xx

I know the research on ovary scans was that they change too much in each and every cycle. Just hoped they’d found other options by now.

I agree it's frustrating there's no ovarian screening OP but there just aren't reliable screening protocols yet. Having said that, if you feel anything unusual (bloating, pain, bleeding etc), go to your GP, explain your symptoms and that you have a BRCA mutation, and you should be seen within 2 weeks for an ultrasound and CA125 blood test.

My experience is that doctors don't take any chances as soon as you mention BRCA. In fact, that might be the only silver lining of this shitty gene mutation - you generally get the fast track service!

Ugh. A whole heap of letters about leaflets about BRCA arrived in the post today and made me very depressed. Ever since finding out about the genetics, I've tried to be extra healthy in other ways (gym, diet); today I fell off the wagon and binged on biscuits and sweets and stayed up all night doomscrolling. The one positive is that I will have the chance to participate in research studies which is interesting and hopefully useful.

It can be really overwhelming OP. I'm guilty of the sugar binges and doomscrolling too!
It's a lot to process.
Try to go easy on yourself 💐