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Original poster

BRCA Gene positive - Telling DC - WWYD

29 replies

ChangedMyMind · 13/10/2016 21:05

So about to get tested to see if I have inherited the faulty gene from DM - the one that massively increases the chance of ovarian cancer. I'm wanting opinions on how to handle this if I turn out to be +ve Sad.

I have 4 DDs aged 10-20, they don't know I had a aunt die young of cancer and we're fairly estranged from my parents, they're elderly so I don't think it's occurred to any of them about the possibility of a hereditary factor...

Eldest is a drama lama so if I tell her then it will be public knowledge but the age gap is large. Telling a 20 year old she has a 50/50 chance of having the gene is bad enough but what about a 10/12/14 year old - how/when can I tell them SadSadSad

I feel if I tell them their innocence of believing they will have future health and children is over, they will have decisions to make. If I don't tell them they can't look for early signs that could potentially save their lives.

Of course I could be positive and all of them negative, but it's unlikely isn't it Sad - if some are -ve and some +ve how do they deal with the "unfairness" of it all.

It's a really shit hobsons choice, damned if I do, damned if I don't. Desperate to be -ve for their sakes SadSadSad

OP posts:
Sofabitch · 13/10/2016 21:13

Have you been offered councelling? They should be pretty good at helping you work through this dilemma.

Personally I'd wait until I knew if there was something to tell them. It might after all be nothing.

MrsPigling · 13/10/2016 21:22

My dds (x3) are 18-11 and I've told them I've started to process to find out if I have the gene(s). I've had the first appointment but there are a couple of complicating factors, so I've put it on hold for now (sorry to be so vague!). I was told given the family history they's offer some screening even if I didn't get tested myself, but I think ultimately I want to know if I've got the gene(s). I just need to sort out life assurance first.....!

MrsPigling · 13/10/2016 21:25

just re-read your post - you don't seem to have considered the possibility that you're negative :) you don't need to give them 50/50 odds before you've found out if you're positive.

SwedishEdith · 13/10/2016 21:28

How old is your mother (you say she's elderly) and do you know for certain she has it?

fittedcupboard · 13/10/2016 21:28

If +ve, genetics clinic will go through this with you at great length and help you. There is no hurry. what is told can't be untold especially if you think oldest might tell younger ones.

Original poster
ChangedMyMind · 13/10/2016 22:08

My Mum definitely has a genetic fault.

I am praying to be negative!!!

I have had some of counselling already, I just need to go back for the blood test.

There is no screening for ovarian cancer, there is nothing reliable enough. The best option is to have them removed as a preventative measure - hence the difficulty in telling my DDs at such a young age.

I was hoping for other people experiences to help be get my head around what is a 50:50 outcome. I am worried for my dds, the having to wait for testing is awful, what is truly awful though is the 50:50 possibility that I may have to tell them about it.

I feel that I will have to tell them sooner, rather than later and I wonder if anyone else didn't until their DDs were older.

OP posts:
elevenswan · 13/10/2016 22:16

Hi,

My mum found out she had the gene when I was 10 and she told me as soon she knew for sure. If I had been any older she would have kept me in the loop with the testing process too.

Being open and honest has been hugely helpful for my family, my aunt has the gene, and she talks about it with my cousins (4 girls aged 12-18 years old) constantly.

When it came to getting tested myself I wasn't scared as I knew everything about brca, the testing process and the surgery. I tested positive as did both my sisters and while it isn't always easy, it definitely isn't terrible either.

The national hereditary breast cancer helpline are amazing and will help you with anything you need. Any other questions feel free to ask me! Xx

Original poster
ChangedMyMind · 13/10/2016 22:21

Which gene does your family carry? This one increases the chance of ovarian cancer to 1:2-3, if it were "just" mainly a breast cancer risk I don't think I'd feel quite as torn about it.

I feel like I'll be telling my girls, forget having children get your ovaries whipped out Sad

OP posts:
elevenswan · 13/10/2016 22:25

I have BRCA1 which increases both breast and ovarian cancer risk, as far as I'm aware BRCA2 also increases both breast and ovarian cancer risk. It's different for everyone (related to what age your relatives got cancer) but generally the ovarian cancer risk starts later. They don't even start screening till 35 as a rule (30 for breast cancer). All the women in my family that have had their ovaries removed didn't have to do it until their late 30s so it definitely isn't a case of if you have the gene you can't have kids

Original poster
ChangedMyMind · 13/10/2016 22:34

Strange I was told there is no screening programme for ovarian cancer (well not in this area), the trials for it just haven't helped. My Aunt died in her early 40s despite having 3 children and having them young. Plus it's which ever part of the BRCA gene that massively increases ovarian cancer risk.

It's that whole thing of if you want kids have them young so then they can whip your ovaries out - this sort of sublime pressure on what they "should" do.

Sadly a good friend is terminally ill with very aggressive breast cancer - it's all a very real thing for me at the moment Sad and because we are estranged from my family my DDs are completely blissfully unaware!

OP posts:
elevenswan · 13/10/2016 22:48

My grandma was the same she had 4 kids in her 20s and died of cancer at 42 and my great aunt got ovarian cancer at 39 followed by breast cancer. It is scary and hard but it really is best to be honest with them, speaking as someone who has been both the child and the one getting tested.

Screening varies from place to place but here they do internal ultrasounds and blood tests, which are not very reliable but most people do elect to have the screening or just to have the survey. With BRCA1 the ovarian cancer risk is up to 39% and up to 65% for breast cancer, and the breast cancer risk starts earlier.

I have other branches of my family that have hid things from their kids, and when their kids had it sprung on them as adults it was a big shock and they felt resentful. It does mean they will have to make big decisions but not for a long time and science is moving on all the time x

elevenswan · 13/10/2016 22:49

*surgery

TheSnorkMaidenReturns · 13/10/2016 23:02

You really need to be open and honest with all of them (and sod the drama llama) as soon as you can among after your positive result. Obviously I'm hoping you have a negative.

My children are well aware their genetic heritage gives them a pre-disposition for a certain type of horrible potentially life-threatening/life-limiting.

I think it's very wrong to withhold this kind of information.

MiscellaneousAssortment · 13/10/2016 23:09

Picking up on what someone else said. Can you get life insurance? This is a rather important question for me at the moment...

ClaudiaJean2016 · 13/10/2016 23:14

You need a genetic counsellor who will help you with telling your family.

lljkk · 14/10/2016 09:23

from what OP is saying, I would wait until youngest is 18 or 20 to tell them all.

elevenswan · 14/10/2016 11:22

Going to have massively disagree with the last poster. Whatever you do, if you are positive do not wait until your youngest is 18-20 to tell them all. Your eldest will then be nearly 30 and she will have no time to digest the information or to plan her life if she is also positive. It would be a very cruel thing to do.

Haffdonga · 14/10/2016 11:56

Remember OP, knowledge is power If you don't give your daughters the knowledge of their own potential risks, you are also removing their power to make their own decisions, get their own health checks and plan their own families accordingly.

But first, you need to have your own knowledge about your own results before crossing the next bridge of telling your dds.

If the worst comes to the worst and you do have the gene, then I think you need to give your daughters the control over their own lives to choose if and when they have the test. Denying them this right is removing the option for them to control their own lives. Your oldest daughter is old enough to have a baby now (even if not expected). She needs to know sooner rather than later.

Finally, if the worst does come to the worst, remember that there are positives about knowing, (closer monitoring and earlier screening) which you can explain to your girls, so you can try to help them feel empowered.

I hope you don't have to cross that bridge. Thanks

MrsPigling · 14/10/2016 12:45

I was told there had been a big study into ovarian cancer screening and the results have shown it's pretty pointless. This is because the outcome (as in how long you live after having ovarian cancer) is not related to how early it's found. So there's little point screening to find it early.

MrsPigling · 14/10/2016 12:47

sorry, meant to say it was the counsellor at the genetic clinic who said about early detection for ovairan cancer not helping with survival rates.

It seems counter intuitive doesn't it, but apparently that's what the stats show :(

shouldwestayorshouldwego · 14/10/2016 12:56

I did some research in this area and I agree that they should be told in an age appropriate way, however it seems very raw for you at the moment so I would ask the genetics clinic for advice.

I wouldn't want to scare the 20yr old into getting pregnant soon at any cost, but maybe suggesting that they might want to plan to have children sooner rather than later, or emphasise the advances in egg freezing techniques. It is scary news, but better to be informed. You can also point out that your mother is older but so far symptomless. Hopefully it will be negative for you and you won't need those conversations.

Original poster
ChangedMyMind · 14/10/2016 13:58

Well hopefully it's angst over nothing but it is reassuring to discuss it with a more rational perspective on it, if I test positive I will be VERY VERY upset for them privately however blasé I'll will be in person. DH has death phobia so he's not able to be supportive to me tbh.

At the moment you can get life insurance as they are not allowed to ask about genetic testing, however I was advised to consider if I want to review this before getting tested!

Yes I was told the ovarian cancer screening had proved fruitless but who knows if they will find something in the future.

Strangely I too had considered the possibility of financially helping paying for freezing of eggs etc. if it comes to it.

Yes knowledge is power, it's just the responsibilities and decisions that come with having it I don't like!

I just wish the girls were closer in age and that the eldest wasn't a drama lama - it will be created into a massive thing, which is not particularly helpful IMHO.

Thanks for your experiences and opinions, it's appreciated Flowers

OP posts:
Original poster
ChangedMyMind · 14/10/2016 13:59

shouldwestay - my Mum is currently dying of Ovarian Cancer Sad

OP posts:
lljkk · 14/10/2016 15:33

From what OP is saying, it could be quite cruel to tell the 20yo. If she is going to take the news badly. What if OP & some of the girls have it but not others. How much of a drama could be made out of that. Why bring the drama into your life sooner than it needs to.

I don't think that it's cruel for OP to be (what, 40?) before she finds out for sure, either.

MiscellaneousAssortment · 14/10/2016 15:44

Thanks. I thought life insurance can refuse to pay out? Sorry if this seems insensitive. I've just been diagnosed with a condition which is basically shit. And I haven't got life insurance to help DS (6) when I go. And suddenly that seems very, very important.