Broaching BRCA testing with teenagers

[Hurdygurdy12]

Has anyone here had an experience of discussing BRCA gene testing with teen girls? DH has tested positive and we have a 16 year old who wants to go on the pill which we would like to avoid given the stats. We haven’t told her why. Confused about next steps and how/when to broach talking about it/getting tested. Anyone been in a similar position?

I think you need to be ho eat with her. My friends husband had breast cancer about was found to have the gene. For some bizarre reason, they didn't tell their 38 year old daughter for months. I'd have been very upset to have had that kept from me.

You need to be honest and tell her asap. My sisters gave the gene and my sisters 11 year old will need to be tested when she’s an adult. She knows this, knows her mum is about to have preventative surgery and why and knows it’ll be available to her too if needed.

Yeah I wish I’d had the option of telling her earlier. She was 15 and about to do GCSEs when the results came through. Docs advice is to wait til 18. I don’t think there’s ever a ’right’ time.

I don't have this exact problem, but I was at a doctor's appointment recently with teen dd and I was asked about family history of certain illnesses. I had to reveal that her father has a condition which is partly genetic. I wish she hadn't found out like that. As we're divorced, I'm in no position to insist he talks to her about it, but I wish he had. I had previously given hints but I thought the detail should really come from him.

At 16 I think it's time to be honest with your daughter. Tell her about the gene, what it means for her dad, and what it might mean for her. Now's the time to be able to sit down and discuss it all calmly in a planned way.

Has she seen other family members get ill? The family I know, the grandma was positive and had cancer, her two middle aged daughters both positive but no cancer at this stage and any number of granddaughters, teens and 2Os all tested and at least one positive (I don't know the others) They obviously all saw Grandma suffer so were somewhat prepared for the idea of having the gene. Sorry it's rubbish isn't it? But she does have the right to know asap I think.

I don’t have experience of this but also think you should tell her now, to explain why you don’t think the pill a good idea, as well as not keeping such big news affecting her from her. I think docs can seem authoritative but I’m not sure that was good advice to wait til 18.

I went through the testing once I found out it was on my dads side and I was about 28 at the time. The worst thing for me was that I had been known for at least 3 years before I was told. I would explain it to her now and also ask the docs for the number for the genealogist therapy if required as they were available both before and after testing.

My SIL is 35 and has recently found that her dad has a genetic condition which can be serious if not managed or treated properly. He's known for many years. She's just had her second child and found out, while pregnant, that she's a carrier. My two nieces now have to be tested and there's concern about the impact on their hearts, among other things. It was cruel to keep her in the dark for so long especially as she had the odd symptom which never really made sense and nobody ever diagnosed until it became clear it was all part of the same underlying condition. She was furious she wasn't told years ago.

I don’t have the gene but I have had breast cancer and I discussed it with dd (15) when I went for more genetic tests recently.

It also depends why she wants the pill. dd tried it recently for extreme period pain (it didn’t work for her) , we discussed the risks. It’s actually more of a risk to drink alcohol (which my dd is not interested in). If I needed it badly, would take HRT. It’s all about risk assessment and knowledge. Personal surveillance is key and if she does have the gene it’s important to know as she will also get a lot more health surveillance through the NHS.

She also may not have the gene.

My son is 15 he knows his dad has the gene and will have the choice of testing, following counselling when 18.

Given your daughters want to start the pill she really should have the information, she may access it without your knowledge and that isn't what you want. I would recommend accessing the family pre counselling service, I am in Ireland so it may be different. But they provided us with lots of information and support.

Yes she needs to know but July is ok, some studies show that taking the mini pill or implant lowers risk of ovarian cancer in those carrying the gene. There's some good websites. My friend is a carrier, thankfully her kids have been tested and are not carriers

Thank you, some wise words. Will chat with DH and see how he feels. I know it’s not a disaster if she has the gene and hoping that us being pragmatic and realistic about it will help her to as well.

I would tell her. She can go and get the pill without your consent and, if you don't tell her why you object, may do just that.

@Hurdygurdy12
Please make sure that, as your husband has the BRCA gene, he has annual PSA tests from age 40 as he is at high risk of prostate cancer.

It’s all in hand. Thank you.

She needs to know now. She could be on the pill already, for all you know

not necessarily. Please don't spread scare stories like that. There are many types of defect possible on BRCA genes and most have been shown to have no link at all to prostrate cancer

@defective
I'm not scaremongering.
See this from prostatecanceruk official website.
DH had gene testing at Royal Marsden and fortunately he doesn't have BRCA1/2 genes but they said he was 4.5 times more likely than the average man got get prostate cancer based on family history and his race.

I was told to test- told in my twenties. G.P advised me strongly to have the test but I declined.

I think 16 is old enough to be told, you may want to have some support though as she may have questions that you won’t know the answer to.

Can we just lay this bit to rest please. It’s not what I was asking and is proving a bit of a derail. Thanks.

I did look into the pill a bit re bc risk and the risk isn’t permanent. It’s obv diff with a higher risk gene and you’d have to take advice,, but I basically worked out as long as dd came off it by her early 20s, it made no difference to her risk. As it was for period pain the idea was to get her through exams. As it happens the pill sent her bonkers so she came off it after about 2 months anyway.

you are scaremongering. It is totally unnecessary and this information is obsolete.

Definitely tell her - it’s very easy to buy the pill online now without any sort of checks so she will just do that.

I'm BRCA2 positive (and have had BC). My DS1 is now 16 and knows he can get tested now. I'm aware that the risks are different for males but he already has a different genetic condition (which was a spontaneous mutation).
DS2 doesn't have it as he underwent microarray testing after DS2's diagnosis.
DD is only 10 but knows about BRCA, in that she knows Mum has problems with her building blocks.
I've explained BRCA to her in an age appropriate way so when she is older it won't come as a shock to her.
I think it's important it's discussed - will the hospital not provide counselling before testing too?

What does your DHs genetic counsellor advise?