My sister has just been found to carry the BRCA2 gene - any one got any experience of this?

[growingbagpuss]

Our Dad died of Breast Cancer 2.5 years ago, he didn't know he carried the BRCA2 gene, he died before they found it.

I am going to be tested - I initiated the whole family testing thing - but am 9 months (due YESTERDAY!) pg and therefore it isn't really the right time. Will get tested once babe has been born.

Does anyone have any experience of carrying this gene? What does it mean for monitoring etc?

I know the stats, I'm not stressed about the whole cancer thing, as I know the risks, but I'm interested to find out what this information means on a practical level.

A branch of my family carries this - my father's grandparents' side, ie cousins of his have been found to have it. The geneticist in Denmark wrote a letter with the specific gene affected which my (second-ish) cousin sent to my Dad to take to his GP who refferedhim on for testing.

As my granny was already dead, Dad had to go to be tested to check he wasn't a carrier. We didn't think he would be, as Granny had been 89 when she died (not of breast or ovarioan cancer, which would niormally have shown in the 40s). He was OK, so I haven't needed to tested.

My Dad's sister is in South Africa and it would cost her a lot to be tested. As she is 66, it is probable that her mother wasn't carrying the gene. Her son has just had a boy, so he will need to decide whether they should be tested.

I don't know about the specific gene, but I read, lifestyle makes a huge difference in the age of onset in genetic-linked cancer. So if you have the threatening gene, you will probably get the cancer one day, but if you live the right lifestyle (don't smoke, lots of exercise, healthy diet, healthy weight) the cancer strikes 15-30 years later.

I think that's worth confirming.

Having the gene doesn't mean that you WILL get cancer, it increases your lifetime risk of developing cancer up to between 50 and 80% -but i agree that the lifestyle thing has a lot to do with it.

Tamum is a good person to talk to about genetics!

Anyway - hope you pop soon , and for the moment, don't worry about it!

It'll depend on which gene it was as to the likelihood of it having been passed on. the gene that had been identified in Dad's family was quite "dominant" in that I think there was a high likelihood of it being passed on, and nasty in that it was an aggressive form of breast or ovarian cancer that could then result. But as Dad is clear, then neither my brother nor I need to worry.

I'm sorry to hear about your dad. I'd have thought the chances of inheriting the gene from him would be 50%. I imagine your sister (& you, if found to have it) will be offered more breast screening than usual, though I think pre-menopause that is not always very accurate. There have been reported cases of having elective breast removal to lessen the cancer risk, though that seems quite extreme. Breastfeeding for as long as possible also gives some protection against breast cancer (don't know for sure if that works against BRCA2, but maybe worth asking?).

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Growingbagpuss, I'm so sorry to hear about your dad.

My experience is limited, but here's what I know. My sister-in-law had the gene and died last year. Her DD is going to be tested next month (she's 15) and, if she carries it, will be monitored carefully (breast screening).

We've been told to get our DD tested (9months old) but not until she's a teenager.

Your post has inspired me to look into this more closely. Haven't been much help, but hope this will bump the thread and someone more useful than me will come along.

Good luck with the baby.

the oldestcat - has your DP been tested? If he comes up neg then you don't even need to think about it for your DD -it would save you quite a few years of anxiety?

If they know your SIL had the gene, testing is v easy, and results come back in a matter of weeks. My understanding from Guys Genetics centre is that they won't test unless a first degree relative has the gene - in your case it is your DP who would need to be tested first.

Sorry for your SIL too - she must have been young -did she have the BRCA1 gene?

Growingbagpuss - he hasn't been tested. Thanks - that's a really good idea. I'm not sure how I'd raise it with him, his sister's death is still so raw. He didn't get much of a chance to grieve as six weeks after she died, our DD was born.

My SIL did have the BRCA mutation - I'm not sure if it was 1 or 2 though. She was 42 when she died. Am amazing woman.

Thanks so much for your help.

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My family are currently going through the process of being tested at the moment. Two of my aunts have died and we have a family history so its apparently more than likely. It does seem to be a long process though.
My cousins have to go to councilling before they will release the results of my aunt (who has now passed) and test them. Next they will test my dad and if he's positive its then my turn.
I don't know if this is how you feel... but I just want to know so that I can deal with it and move on with my life. I honestly think that I will stress about it less once I know... either way.
I do worry about what will happen if I want private medical cover etc in the future.
They do say though not to worry about our childrens generation as they believe there may be a cure by then. So thats something...
I'm sorry not to be of any help though. Just really saying I want to know the same as you!

Jackmummy -it is interesting - the gettign on with your life thing is very much how I feel.

with this gene i know that the risks are much lower, and my Dad was v unlucky as when he was first diagnosed and treated they were v unsure about using things like Tamoxifen to treat long term.

In terms of medical cover etc - at the moment there is a moritoreum (?sp) on using that kind of info against people. When we recently got life cover, they asked the standard questions about cancers etc, and weren't interested that it was my Dad who had had CA -I'm sure it'll all happen eventually

If you know you carry the gene, I'm sure in some ways medical cover ought to see it positively (?) coz at least screenign is improved, etc? Or am I being naive?