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Share your dilemmas and get honest opinions from other Mumsnetters.

BRCA testing for breast cancer

16 replies

backtolifebacktoreality · 27/12/2021 01:21

A teenager I know lost her mother to breast cancer. Her mum was only in her 30s when she died. The teenager's grandmother (mum's mum) also died of breast cancer at a relatively young age.

It has been recommended that, when she's old enough, the teenager should have the BRCA test. Can anyone please shed any light on what exactly the test is and what age she can be tested etc.

Obviously we will need to ensure that she will be mature enough/ready to deal with the results.

Thanks

OP posts:
Roomforanotherraspberry · 27/12/2021 01:26

I had the test as my auntie has this and had breast cancer, I am lucky that I don’t have the gene, and neither does my sister, but some of
my cousins do. I went private for mine, and my sister through the NHS.

Mine was a saliva test, and my sister was a blood test. There is preventative surgery you can have, but I think it depends on age etc. I was asked why I wanted the test, and I had thought about the test and results and what I would do before hand. There is a Facebook group too, but I don’t know if there is an age restriction.

I am happy to help if I can?

SeaToSki · 27/12/2021 01:30

There are a couple of genetic mutations that can be inherited that increase the chance that the person will develop either breast and/or ovarian cancer. There are two main ones that can be tested for although there are probably more out there that havent been confirmed yet

This web page is a very good summary

www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

sparepantsandtoothbrush · 27/12/2021 01:38

They have to be 18 to be tested

Sharingplatter · 27/12/2021 02:08

Sorry to hear you are going through this. I have the brca 2 gene. I was tested when I was 26 via a blood test as my mother got breast cancer at 33. I had preventative surgery. I had genetic counselling prior to testing but this was many years ago and things may be different now.

DestinyIsAll · 27/12/2021 03:17

I was diagnosed with breast cancer last year at 51, my 1 year older dsis diagnosed 6 months before me also at 51, plus a younger cousin died fairly recently too of ovarian cancer so my GP felt there could be a link.

Initially they weren’t going to test for the BRCA gene as my BC surgeon was of the view that though it seems too much of a coincidence, in reality, due to how (sadly) common BC actually is especially at 50+, that it probably was just coincidence. My cousin dying in her 30s from OC was the deciding factor and my GP pushed him for (NHS) testing.

After referral my first stage was a review by the genetics clinic where they decide if your family case warrants it. Mine did and we got the go ahead. You then get booked for a long session with a genetics councillor who takes a detailed individual and family history and talks through it all very thoroughly, including the implications of a positive result. The one I had was very good. They ask for details of cases of family members (living and passed away) who’ve had a relevant cancer (inc men with prostate) and where necessary get contact details/permissions to check medical history.

The test itself is a simple blood test which they send you the forms for. Results take about 6 weeks.

Mine actually came back negative for a specific higher risk genetic BRCA mutation but still at a significantly increased risk of BC. I didn’t know this could be the case but it’s not always as simple as a positive or negative for the gene. I have daughters and the risk is the same for them and they will be invited for early screening at 40. They also asked for permission to retest my sample in future as they couldn’t identify the exact link at the time but as research and testing advances they may be able to.

They test from 18.

I had a mastectomy and treatment last year and for my daughters, we feel forewarned is forearmed. My genetic appointments were affected by Covid, so phone and video appointments rather than in person, but even so in my experience the explanation and counselling were very good.

Hope some of that might be helpful. Happy to answer any further questions if I can.

silentpool · 27/12/2021 03:21

One consideration is that having the test can then affect life/critical illness etc insurances later on as you then have to declare it.

To get around this, we had my elderly father tested (as it came down his line). If he did not have the gene and was not a carrier, we understood that this eliminates his female descendants.

backtolifebacktoreality · 27/12/2021 03:57

Thank you all so much for your very very helpful and thorough comments. They really give me some food for thought. Thanks too for sharing your personal stories x

OP posts:
Starface · 27/12/2021 04:49

Hi there, @backtolifebacktoreality

We are a BRCA1 family. My mum had BC twice, as did my aunt. My grandmother had it too. And various cousins had both BC and ovarian. We knew mum had the BRCA1 gene. It puts you at increased risk of breast cancer and ovarian cancer.

I got tested at about 30, though could have been tested any age from 18. Like others said, you have counselling first. There are psychologists to talk to as well if you need it. It can be a really emotional process but there is loads of support. The test itself was a blood test, but it's the emotional side that is hard. Having lost so many people I can imagine it will be for your loved one too. My experience is that my service is pretty well resourced though. And of course they have seen all this before.

If you do have the gene there are a whole range of options. You can even embryo select and do ivf to screen out the gene for future generations.

I was on enhanced surveillance for BC from 30, as that's when the relative risk starts increasing for BC. It's a cumulative risk, so by 40 its something like 25% of carriers have it, right up to 80% risk later in life. I just did the surveillance programme first, as I wanted to breastfeed my kids, but could have had risk reducing double mastectomy and reconstruction at any time from 18. You can still have kids, and the just bottle feed them. On the surveillance program they check you annually. But they can't actually check you if you are pregnant or breastfeeding, so it can be a while between checks.

I was also at risk of ovarian cancer. There is no effective surveillance program for this. There is risk reducing surgery for this. I think they can do your fallopian tubes first before age 40, then your ovaries from 40 - they won't do earlier because of menopause and increased osteoporosis risk. They balance the two risks.

The choices aren't straightforward or easy, at any age. My personal view is that knowledge is power. As is facing up to and working through the pain of the past. It's hard but worth it. Having the knowledge or not, it may affect life choices. I know it affected mine even before I got tested. It is quite a big emotional deal going through the tests.

FWIW I actually did end up with breast cancer. A particularly aggressive type. I hadn't been checked for maybe 5 years as I didn't squeeze in a check between kids (got pregnant very quickly). I was still breastfeeding but found a lump myself - I was checking, which I might not have been if I didn't have the gene. I was 38 when I found it, so quite young really. It was at stage 3, and seems to have responded to treatment thank goodness, although it was all a bit covid disrupted. I'm due to have the full risk reducing surgery as soon as they have space (should have had it last year, but the winter covid wave disrupted everything). I don't want it again!

I'm still pretty ambivalent about whether I made the right choices or not. I did love breastfeeding, but cancer treatment has been hard, and has really affected my career and life energy. But having the gene also affected that - I had kids younger because of it, which also affected my career. As you can see it's very tied in with fertility choices generally. It's very hard because you are gambling with the future and uncertainties. I'd probably feel quite different if I'd been stage 4 or if I hadn't responded well to treatment.

Anyhow, best wishes to you and your loved one going through all this. Its not easy, and sounds like they had a tough time already.

OompaLumpaLabrador · 27/12/2021 08:01

Starface thanks so much for such a detailed and honest post. I’m 43 and have in the past three years gone from having no family history of BC to having a mum and aunt both with bilateral BC ( and it surfaced also a GGM who died of OC). DM has been referred to clinical genetics and, if we had the gene, then it’ll be my turn. I have a GP appointment in January to discuss getting enhanced surveillance. In my forties, I feel time isn’t so much on my side in terms of waiting to make any choices that come my way. Your post has helped enormously. Thank you. And to everyone else who has posted with information. It really does help. I’m not close to that side of my family and my mum has struggled this month with her mastectomies, so it helps to hear other people’s stories.

backtolifebacktoreality · 27/12/2021 11:07

Thank you again for taking the time to write such detailed responses and for sharing your stories. It is really appreciated and means a lot x

OP posts:
Starface · 29/12/2021 16:35

@OompaLumpaLabrador no problem. Its amazing to send something into the ether and help someone. Feel free to PM if you want to.

navigatingmy20s · 28/10/2023 10:35

Hi Everyone,

I know I am jumping on an old post, but thought i'd give it a shot.

I'm turning 30 next year. Females on my maternal side have the BRCA2 gene.

My grandmother passed away from breast cancer after numerous battles when she was 65.

My mum was diagnosed with ovarian cancer when she was 47. She passed away from secondary OC last September when she was 55.

My auntie was diagnosed with breast cancer when she was 38. She is currently still in remission.

I haven't been tested for the gene yet, but I am thinking of calling up the doctors on Monday and demanding that they put me forward for genetic counselling so I can be tested.

I have 2 DD's and I have spent the last 9 years worrying I will meet the same fate as my mum.

My heart hurts all the time when I think my DD's could have to watch the same thing happen to me that I had to watch happen to my mum.

I feel like if I get tested and find out I have the gene, I can start to take control of things. I would want a full hysterectomy ASAP and regular breast screening.

I don't really know where I am going with this, i'm just hoping maybe some of you are still on mumsnet and I could maybe possibly message some of you for some support when I have had the testing done?

Obviously my mum isn't here for me to talk to, I have friends but I feel like no one would understand unless they are in the same position.

I don't want to burden my auntie either. She was only 27 when she lost her mum and of course she just lost my mum (her big sister and best friend) last year, so this is a very heartbreaking topic for her. She has her own DD (13) as well, so I don't want her knowing my thoughts as she will obviously think of her DD feeling the same way when she is older.

user1494050295 · 28/10/2023 10:47

As the above. Get under the marsden if she can. My daughter will be tested in her mid 20s

Mercurial123 · 28/10/2023 11:07

My dad's side of the family was suspected to be the carrier for my gene mutation as so many relatives had breast cancer and at an early age. It was a bit of a shock when it was my mum's side.

I have Chek2 and BRCA2 VUS (variant of uncertaint significance). It's a lot to deal with but knowledge is power. I had a prophylactic mastectomy and hysterectomy.

Mercurial123 · 28/10/2023 11:09

Zombie post

GasDrivenNun · 28/10/2023 15:02

BRCA genes also increases the risk of prostate cancer in men.

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