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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Anyone done BRCA2 gene testing?

27 replies

WhereAreWeNow · 10/07/2024 19:28

I've recently found out that my aunt has the brca2 gene and there's a 50/50 chance that I do.
I'm going to do the test but I've been told it could be a 3 month wait for results.
I'm trying not to go mad in the meantime. Everything I read about brca2 is terrifying. 80% chance of getting breast cancer and preventative mastectomy and oophorectomy is recommended. I'm getting ahead of myself and worrying about everything.
Just wondering if there's anyone in the same boat or anyone else who's been through this.

OP posts:
Iwasafool · 10/07/2024 19:45

.I've been tested for the BRCA1 gene, I was lucky and didn't inherit it so it was a big relief. The waiting for the result was the hardest bit but it definitely wasn't months, more like 2 weeks I think.

Are you sure you have a 50/50 chance. My aunt had it and I was told my late father would have had a 50/50 chance of having it and if he had it then I would have had a 50/50 chance, if he didn't have it then I wouldn't.

Good luck, I hope you get a negative result like I did but if you don't at least you and the medics know what to look for and early diagnosis is so important.

combinationpadlock · 10/07/2024 19:49

Why would it be 50/50? I think it is a lot less than that. Also, its Brca 2, the best one! Just get the test done, and deal with it if you have to, but it is not so bad, really

WhereAreWeNow · 10/07/2024 20:34

The genetic counsellor said it was 50/50. She also said to expect a 3 month wait.
I'm glad you got a negative result @Iwasafool .
@combinationpadlock is brca2 a good one? Everything I've read sounds pretty terrible! Is brca1 worse? Looks like cancer odds are similar.

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bringonyourwreckingball · 10/07/2024 20:41

I had the test because I was diagnosed with triple negative breast cancer in my 40s which is super rare without the gene. I was negative. It was such a huge relief. I was largely at peace with the idea of having a double mastectomy and hysterectomy having had my children but couldn’t contemplate the consequences for my teenage girls. But I still think better to know and deal with whatever that means. Even if it means you have a massive chance of getting breast cancer you still have options. There are so many treatments these days.
it is horrible and terrifying but it’s the right thing to do. In my experience once you know what is what, you can deal with it. Not knowing is worse, it will corrode you from inside over time.

WhereAreWeNow · 10/07/2024 20:45

Thank you @bringonyourwreckingball@bringonyourwreckingball and sorry to hear about your breast cancer.

My dad doesn't want to do the test. Doesn't want to know. But I agree it's better to know. At least the I can work out my options.

I'm just trying to stop my mind racing ahead. In my head, it's already definite that I'm positive and I need to have surgery and worry about whether DD has it. I need to slow my brain down and just try to wait patiently for the results.

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BaselineDrop · 10/07/2024 20:48

DH was - his dad has it (currently in remission from rectal cancer).
DH was negative. HIs sister was positive and had the preventative oopherectomy and hysterectomy, but decided against mastectomy for now.
The op was fine, short waiting list. The worst was the wait but once she knew it was sigh of relief at having the results and get on with what needs to be done.
It doesn’t change reality, just lets you know. I would always want more information than less. In a way there’s absolutely no point worrying at all. Sometimes worrying can lead you to solutions you haven’t though of but not in this case.
Good luck, I hope it’s negative.

bringonyourwreckingball · 10/07/2024 20:52

I know, I was the same, i had had so much bad news piling on top of each other I couldn’t see how it could possibly be ok. But I am now absolutely fine. And another thing to think about is that even if the worst happens - it might be miserable for you, which is hideous, but not necessarily for your daughter. Science moves on all the time. I am ok because of a brand new treatment which i would not have had if i was diagnosed a few weeks earlier. That is the point of the gene testing, it gives you choices. Not great ones but still better than just rolling the dice

QuiltedHippo · 10/07/2024 20:56

I felt better with a positive result then I did not knowing and wondering, it removed the uncertainty.
It forces you to take your health seriously, it makes doctors take you seriously (e.g. pelvic pain, which is classic getting fobbed off territory becomes meaningful with the ovarian side of things) the screening services are excellent.
I had IVF to avoid passing it on. The science is incredible.
I hope it is negetive but it really isn't awful I promise.

WhereAreWeNow · 10/07/2024 20:56

Thanks everyone. This is making me feel a bit better.

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Jennywren8 · 10/07/2024 21:18

I was tested at a NHS hospital after having breast cancer as uni have young daughters (and a son). That was 6 years ago and results came back as a question mark around BRAC. They advised me to get tested in 5 years as genetics and science move on so I did at the end of last year. It thankfully came back as negative which means mine was just bad luck. It's a huge reassurance to know and that I could tell my children

Jennywren8 · 10/07/2024 21:18

Not uni! No idea where that came from!

lavenderbluesleep · 10/07/2024 23:03

Yes I have it. I had double mastectomy aged 27 and will have my ovaries removed around age 40.

WhereAreWeNow · 10/07/2024 23:15

Thanks @lavenderbluesleep

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tothelefttotheleft · 11/07/2024 02:43

Jennywren8 · 10/07/2024 21:18

I was tested at a NHS hospital after having breast cancer as uni have young daughters (and a son). That was 6 years ago and results came back as a question mark around BRAC. They advised me to get tested in 5 years as genetics and science move on so I did at the end of last year. It thankfully came back as negative which means mine was just bad luck. It's a huge reassurance to know and that I could tell my children

Did you have triple negative breast cancer?

Jennywren8 · 11/07/2024 18:13

No, just oestrogen positive one (funny to think I can't remember the actual name now given that it dominated my life for a year)

Jennywren8 · 11/07/2024 18:15

I had a mastectomy and demanded a double (I didn't need the second one amputated but couldn't face finding another lump in that one later down the line which would have been traumatic) - on a plus side I am now 47 and have very perky fake boobs, don't even need to wear a bra!

StinkerTroll · 11/07/2024 18:21

Husband and SIL were both tested, they had to go for counselling before and have a 'cooling off' period. We discussed the pros and cons and decided he should have the testing as we have teenage daughters, seem to remember the results were back reasonably quickly. Both were negative thankfully

aodirjjd · 13/07/2024 22:31

Jennywren8 · 10/07/2024 21:18

I was tested at a NHS hospital after having breast cancer as uni have young daughters (and a son). That was 6 years ago and results came back as a question mark around BRAC. They advised me to get tested in 5 years as genetics and science move on so I did at the end of last year. It thankfully came back as negative which means mine was just bad luck. It's a huge reassurance to know and that I could tell my children

That’s interesting as I asked about bilateral masectomy in similar circumstances and they said it wasn’t an option.

Maddy70 · 16/07/2024 15:26

I have had my results today. I'm negative for the gene so a single mastectomy for me and very relieved i wont pass it on to my children. I was also told if I was positive for the gene it would be 50/50 for each of my children to inherit

WhereAreWeNow · 16/07/2024 21:41

Great news @Maddy70 ❤️
How long did it take to get the test results?

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Maddy70 · 16/07/2024 22:59

WhereAreWeNow · 16/07/2024 21:41

Great news @Maddy70 ❤️
How long did it take to get the test results?

It was about a month. Thank you x

aodirjjd · 17/07/2024 06:04

@WhereAreWeNow im also waiting on results. In the meeting they said 6-12 weeks but follow-up letter says 3 months. It’s been 7 weeks and counting now.

they didnt wait for my results to proceed with mastectomy which will mean I need a second operation for another masectomy if it’s positive.

WhereAreWeNow · 17/07/2024 06:35

Fingers crossed for you @aodirjjd

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Maddy70 · 17/07/2024 13:03

aodirjjd · 17/07/2024 06:04

@WhereAreWeNow im also waiting on results. In the meeting they said 6-12 weeks but follow-up letter says 3 months. It’s been 7 weeks and counting now.

they didnt wait for my results to proceed with mastectomy which will mean I need a second operation for another masectomy if it’s positive.

Edited

Thats really shit tbh. Im not in the uk but they were insistent on results before surgery. Im so sorry you are waiting

user1492757084 · 17/07/2024 13:10

I had the test after getting breast cancer..

I was advised not to tell my kids about the test (so they could still take out life insurance) and to take out any life insurance myself before any results.

I was lucky. I didn't have the gene for any of the bracas.
It was great to know that. And then I was also able to share my negative results without affecting whether my kids could get life insurance.