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?

I found that I was BRCA2 positive in my early 50s, childbearing long done so having my ovaries out was a no brainer. I struggled psychologically with the mastectomy so opted for annual MRI and mammogram. My understanding is that once you’ve had the mastectomy that’s it, no further support or screening from the NHS.

I don't have the braca gene but my sister was diagnosed with breast cancer at 28.

I was supposed to have yearly MRIs because of this from 30 but in the end they opted for mammograms. So far all have been cleared. I'm not 39 with a 2 year old and seriously considering a full hysterectomy. Due to the fact that my sister died a few months ago from her secondary cancer.

The family history breast care nurses seem to think that breast cancer skipped my mum because she had an early hysterectomy. So to me it makes sense.

No one can tell you what to do though, the decision is yours. Research Research and research more. Discuss things with your family and make the decision that is best for you. I wish you the best of luck with it all xx

I was diagnosed with breast cancer at 36 and then found out I had the BRCA2 gene. I was having a double mastectomy anyway as had cancer in both breasts. I had ovaries and tubes removed, but again that was an easy decision to make as I had completed my family - DC3 was 6 weeks old when I was diagnosed.
My sister wanted the preventative mastectomy but was refused after psychological consultation. She had to have yearly mammograms. She is dead now (not cancer related) so I don’t know what would have happened.
I chose not to have reconstruction, and menopause hasn’t been easy without HRT, but I’m 47 now and my youngest is about to start high school. Good luck!

I absolutely feel the same. They’re just bags of fat. My cousin had a preventative mastectomy because every previous woman in her family had suffered from breast cancer and she had the gene.

I have the BRCA2 mutation @anonymous98 and I'm facing similar decisions (although in late 40s and having completed my family so different circumstances).
I don’t think there are any easy answers. Wait and see what the results are. If it's positive, you'll have the support of a genetic counsellor to help you make these decisions.

Personally, my mind changes from one day to the next. I'm terrified of surgery and the possibility of things going wrong. Removing healthy organs feels really hard to get my head around as someone who's been lucky enough to have never had any surgery before. But I really hear those breast cancer survivors who say they wish they'd had the option of removing breasts/ovaries before they got cancer. And the odds aren't great.
Take your time. Wait for the results. Read as much as you can. If it's positive, join supporter groups like BRCA Chat. There's also a good Macmillan brca forum and and American site called FORCE. If it's positive and you do want to have surgery, you're likely to have a bit of a wait on the NHS so you'll have plenty of time to talk to surgeons and genetic counsellors etc.

Ps. Thanks for starting this chat. It's nice to see there are a few of us brca carriers on MN.

Hiya, I have BRCA2 (late 40s) as does my DD (23).
I had a preventative double masectomy and DIEP reconstruction three months ago and am more than happy to show pics, discuss the surgery via DM.
i was diagnosed in 2018 and did have to wait 4 years for the surgery once I had made the decision to go ahead with it.

Whilst I was waiting for the surgery, I had annual mammograms and MRIs to check the breasts, but there isn’t any regular screening for ovarian cancer. Although, I am on a PROTECTOR trial in which they removed my fallopian tubes in 2020 and the ovaries should follow in a couple of years.

I’m not sure what my daughter will choose to do in the future - that’s the bit that scares me.

Without wishing to give you more worry, be aware that it isn't just breast and ovarian cancers that BRCA raises the risk of. Even after a mastectomy and ovary removal, it's wise to get regular blood tests to check for cancer markers and liver function. My dear friend was so careful on the breast checks but then got cholangiocarcinoma due to a BRCA mutation.

Good luck with the results

I thought about it when I was waiting for testing and decided the most logical thing for me would have been to have surgery + reconstruction ASAP to get it out of the way before any potential changes.

However, despite a significant family history I hadn't inherited either, so I wasn't faced with the reality of having to make that decision, which I think would have been a completely different matter emotionally for both me and my daughters. I hope that you are in the same position.

I’m not in your situation so perhaps it’s easy for me to say but I’d be having surgery to remove my breasts asap.

good luck with the test results x

My mum, aunty and grandmother all have had variants of breast/ovarian cancer. My mum was tested and has the BRCA gene.

Ive been to a specialist who has taken a sample of my blood to test after I have my second baby (37 weeks pregnant currently)

I would probably opt for the preventative mastectomy, possibly hysterectomy too to cancel it all out! My mum had a double mastectomy at 42 and later a hysterectomy, my aunty (mums sister) had a lumpectomy and unfortunately after years of being cancer free it’s recently returned so she’s had the full mastectomy now.

I think, as mentally difficult as it may be to go through it, I watched my mum suffer with chemo at 15 years old loosing her hair etc she was only 42 and and I’m 39 now, I feel incredibly lucky to have the chance to completely avoid it, otherwise it’s just a ticking time bomb and with two small children I don’t want to take the chance.

Good luck OP. I hope you don't have the gene, and if you do have it, good luck with the decisions you'll need to make.

I don't have any experience of it so this is all hypothetical but I think it would get on the waiting list for a double mastectomy (a PP said it can take years) and in the meantime get regular scans, blood tests and check-ups.

If wanting children I would aim to have them sooner rather than later so I could then get my fallopian tubes removed as soon as possible after last child is born. I realise that's easier said than done if you're single! I hope you can meet someone in the next few years if that's what you want.

My friend was diagnosed with breast cancer at 32 and it's now terminal. I have another friend who was diagnosed aged 28. It seems to be affecting people younger. I definitely pay for private scans. In the grand scheme of things they aren't that expensive.

Hi I'm 29 and found out at 21 I carried the brca 1 gene.

you should get yearly mri's younger than 30. I had them from 26 I think. They won't remove ovaries ideally before 40. Especially not if you don't have a mastectomy

I had a double mastectomy and reconstruction August last year, and I'm going to have my ovaries removed at 35 (29 now) as I have my 2 boys and I'm done having children.
knowledge is power in this situation! And the MRIs personally didn't provide me that much reassurance at all I was more than keen to have a mastectomy and remove the problem

Absolutely - good reminder to everyone.

Thanks to all for being so open and sharing your experiences xx

I am in your position - BRCA1- now 50. Found out at 30.

Remember the gene doesn’t guarantee cancer. At all. So you shouldn’t live in fear. But it significantly heightens risk. Environment and diet all promote gene expression. My professor of genetics was glad I don’t eat dairy. Processed food, alcohol, high dairy, high meat western diets are not good for you.

Mammograms are cancer causing (yes, look it up). You don’t want to embark on them too early if you can avoid it. Knowing your breasts is good advice.

My gynae wanted me to take everything out at 30 (prof of genetics didn’t - they fought a bit over it). If I had listened to gynae’s advice I would never have had my gorgeous daughter, plus would have spent 30s and 40s in surgical menopause. As it happened I thought it was such shit advice from him.

I had:

• fallopian tubes removed at 44 (latest research suggests ovarian cancer starts in tubes) - very straightforward day operation
• prophylactic mastectomy at 45 - much bigger op with more down time but frankly didn’t find it completely awful etc. I had removal and reconstruction in one go. Superb surgeon.
• I am now on Bioidentical HRT and about to have ovaries out

You must do everything you can to live healthily and without fear while you’re deciding what to do and when. Your story is not set in stone

I got diagnosed with ovarian cancer at 34 and had the full gamut of surgeries (including. Hysterectomy) and chemo. Bloody awful the lot of it (and surgical menopause was brutal for me). I was tested during treatment for BRCA and decided if I was positive I'd go straight for mastectomy. As it turns out, my ovarian cancer wasn't caused by BRCA (probably some other gene mutation we don't yet know about!) So I didn't have to do it, but there was no doubt in my mind I would have had the mastectomy to minimise future risk.

Hi everyone, I am really grateful for all of your responses and am reading along. A little overwhelmed and worried, as you can imagine. Here's hoping it's negative - if not, I'll deal with it. I am an only child and, as selfish as it sounds, I really wish I had siblings right now so we could all go through testing together. I also know my mum will be worrying about me :(

My best friend chose to have her ovaries removed in her early 40s and has 6 monthly mammograms . Ovarian cancer is what killed most people in her family so she feels this was the right choice for her .

Just to add, I do understand how lonely this feels but siblings aren't a guarantee of anything. My brother doesn't want to get tested and he's not being especially supportive. I'm not sure he really gets what a big deal this is.

This. I have 3 brothers and I can't imagine them being my main source of support if I ever had to go through any health issues.

Perhaps I overestimated siblings! Tbh I am just coming out of a period of very poor mental health, have two parents who are retirement age and ill, so I do feel quite alone.

Have you got any close friends to support you @anonymous98 ?@anonymous98 ?
I do recommend taking things one step at a time. You may not have brca at all so you might not need to worry about any of this stuff. It took 4 months to get my results back so you might have a long wait ahead before you find out.
If you are positive, you'll find there are some really supportive forums and groups who meet online and IRL so you'll find new friends who really get what you're going through.

I've lost a lot of friends due to a bout of agoraphobia. Lots of people I'm friendly with but wouldn't feel comfortable talking to about the genetic stuff.

Trying to take things one day at a time!

Updating the thread to say that unfortunately I have inherited the BRCA2 gene. My genetics counsellor is very nice and we are meeting next week to discuss my options. Not the best way to start the week but oh well!