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?

Thank you :)

I had 4 kids when I found out BRCA1 was a possibility (father died when I was a child and his family didn't think to let us know - lovely cutting off your dead brothers kids because his widow remarried) so id already had hysterectomy and ovaries removed. Think I'd have had the mastectomy. My main fear was for my kids.

i was lucky and didn't inherit it but I believe some of my cousins did, one had mastectomy and one hasn't. It is a very personal decision.

I hope you are getting support and I think you are right to have the private MRI. Good luck.

Annoying update re: private screening: my insurer won't cover preventative care, only cancer care. So I will have to pay out of pocket.

Was supposed to attend a BRCA webinar tonight but missed it, as my mum is unwell in hospital. What a terrible month it's been!

Sorry your mum's been ill @anonymous98 . Sometimes life throws you lots of curve balls all at once.
Was that the BRCA Chat webinar you missed last night? I went and the one thing that might be relevant to you is the genetic counsellor said that the age guidelines for screening have changed in literally the last fortnight. She said the NHS will now offer screening to women aged 25 and over. So it's worth contacting your genetic counsellor about that.

@anonymous98 looks like the guidance was updated at the end of April
https://www.gov.uk/government/publications/breast-screening-higher-risk-women-surveillance-protocols/tests-and-frequency-of-testing-for-women-at-very-high-risk--2

How are you getting on @anonymous98 ?

Well, I'm honestly quite depressed. A lot of things haven't been going to plan recently and I'm feeling fed up.

I have private health insurance but apparently they won't cover preventative care. So I'd have to pay out of pocket for any screenings. I feel I am being pushed into the preventative surgery route and that upsets me. I'm not ready for that.

Had stomach pain and bloating yesterday and starting panicking about ovarian cancer 😬 Fun!

Sorry think I mentioned that previously upthread! Scrambled brain!

Even if you're too young for the annual screening in Scotland, you will still get screened if you have symptoms. If you explain your pelvic symptoms and your brca status to your GP they should absolutely refer you for ultrasound and further investigation. Same if you find a breast lump.
Please do go to the GP.
There's another BRCA Chat webinar tonight. Might be helpful for you.

Thank you, I thankfully think my symptoms are period-related (I'm very premenstrual and they only started this week). But I am going to need to speak to the GP about referring me for private screening.

I have a long history of very bad health anxiety, so having this hanging over my head is really hard

I can understand that @anonymous98 . I didn't have a history of health anxiety before I found out about my BRCA gene but I now definitely do have health anxiety. I'm constantly anxious.
Hopefully your GP will refer you for scans on the NHS. You shouldn't need to go private if you have symptoms that warrant investigation.
Try not to worry too much though. If you're premenstrual then that's probably all that's going on.
This is the peer support group tonight. Might be useful for you as it's gynae focused. https://brcachat.com/event/peer-support-group-3/

Went to the doctor's today to set up screening. GP took a blood sample to check CA125 levels. Am quite nervous. I do have some IBS-type symptoms and mild bloating from time to time. Trying not to spiral.

Getting breast MRI done soon.

I know no one can reassure me, but I've had on and off stomach aches and constipation over the years and I'm really nervous about the CA125 result. My periods are pretty normal and I'm not urinating any more than usual. Appetite is good. I hate having to worry about this.

Try not to worry @anonymous98 . If your digestive/stomach issues have been on/off for years, that doesn't sound like ovarian cancer. Obviously good to get it double checked for peace of mind.
Be prepared that it's very common for 1st MRI to lead to a recall and further investigation. It's such a sensitive test that it shows up all sorts of things they need to check out. I think it gets easier after that because there's a baseline they can compare new images to.
There's a BRCA Chat support group tomorrow I think. It's online and a good place to talk to other women in the same boat.

Thank you @WhereAreWeNow. I'll put tomorrow's chat in my diary.

100% preventative mastectomy and reconstruction as soon as possible and ovaries removed straight after I had had my children. Why would you live with what’s essentially a ticking time bomb when you can avoid the worry?

Does anyone know when a CA125 is likely to come back, if I had the sample taken on Tuesday at 9am? Stressing out!

I had one of these tests and it came back in about a day or two if I remember rightly. This would all depend on how busy the lab is are so please don’t worry if it is taking longer. Also try looking on your nhs app as your results may show up there. Hoping you will get a good result.

I have a high tolerance for risk so would probably do nothing until age 50 and then review my options.

My impression of these genes is they move the likely diagnosis age down by only a small number of years, but make the diagnosis more likely especially at the ages cancers are usually diagnosed. So on average, diagnosis is still in age 60-70s.

Also that the modifiable risk factors are more important when you have these genes. So obviously keep active, don't smoke, don't get fat, eat a 'good' diet, stay off the booze, etc. Those things you can do today.

I have had a mastectomy. It's fine honestly and they do a great boob job afterwards

CA125 is normal, I'm glad to say

That is really good news

Congrats - must be a huge relief!

Option 2 then option 3 at a suitable date later. My mum died due to breast cancer and I have no doubt what I'd do.