Do I need to ask about testing for BRCA gene?

[MrsTylerJoseph]

My mother’s sister got breast cancer quite young, early to mid 30s. Had a mastectomy and then in her early 50s died from ovarian cancer.

My maternal grandmother also got breast cancer in her 50s and died.

My mother now has peritoneal cancer which apparantly is often caused by the BRCA gene and is closely related to ovarian cancer, she is in her early 70s so older I guess. I have no idea if her specific case is due to the gene or not and can’t ask as we’re not in contact and there’s no other family who would know.

I’m beginning to feel slightly concerned.

Hmmm. Yes, I guess you have a reason to ask to get tested. My mother's sister died of breast cancer in her early forties, and one of her daughters indeed has the BRCA mutation and ended up having a double mastectomy before she was 30. Her siblings are clear, as far as I know.
We had few rather uncomfortable weeks waiting for my mother's test results, but she doesn't have the mutation.
In your situation, I'd get the ball rolling to get tested...

I'd say speak to your GP if it's causing you worry, but there are two types of BRCA mutation, one more typically associated with early onset breast cancer and the other with ovarian, so it could just be a sad coincidence

Thanks, have just been googling at how testing is done and normally you need an affected relative with a positive test and you need a copy of that test so the doctors will know what to search for. I can’t do that.

Then it says if no relative test available it may be possible to do a full gene test for those with at least a 10% chance of having the gene.

One other issue is that I have another chronic medical condition which gives me all the symptoms of ovarian cancer.....so I would never spot it.

On your family history I think they would be willing to test. All the GP needs to do is refer you the clinic do everything else.

My DM got ovarian cancer in her 70s, her sister died of breast cancer in her 40s they were happy to test me on that history.

Definitely speak to your GP but they might not be completely up to speed with genetics - so request referral to genetics centre / family history unit. They will assess your risk and discuss it with you.

Normally a relative who has had cancer will need to have a genetic test before healthy relatives are tested. The genetics team can go through this with you and talk through your particular family situation.

I am hoping to request genetics testing for BRCA as my maternal grandmother had it, two 3 maternal aunts had it (one died) and my mum had pre cancerous cells. My maternal grandfather had bowel cancer (he died), a maternal uncle also had bowel cancer. Paternal grandfather had a brain tumour (he died) and paternal grandmother had breast cancer.

Does anyone know if the doctors are likely to test my mother to see if her cancer is caused by the gene or do they not bother and just treat the cancer?

I can not get in touch with my mother and ask her to have the test, I just can’t.

I had breast cancer at 26 and later tested positive for brca2. Have had double mastectomy and ovaries removed.
My poor dds will need to be tested, dd1 is 16 and I'm just in the process of requesting it.
Get a referral in the first instance. It was a long wait in my area.

They might well have recommended that she had the test, as it could affect her risk of future cancers and therefore influence decisions about monitoring etc once the current cancer is treated.

I am estranged from my family don't worry about it. They prefer you to have the results from other family because it's much cheaper to be looking for where they know the faulty gene us rather than the whole string of DNA

I have a mother and maternal great aunt who both had post menopausal breast cancer. On my paternal side an aunt died of ovarian cancer and her daughter pre-menopause has just had breast cancer.

My Dr told me I was not eligible for NHS testing (about 3-4 years ago). It needed to be mother & sister or more than 2 close relatives per side. The guidelines used to be on the NHS website and my Dr had followed them. But they could have changed.

I'm now abroad and my insurance won't cover the testing. I've been quoted £5k-£8k for private testing. I haven't done it despite my Gynae pleading for me to do it at every appointment.

It also gives higher confidence that any gene faults they do find are in fact disease causing. We all carry lots of small gene faults that don’t have any effect on health.

Right, will go see GP. Thanks.

MrsTyler I don't think they do test the genes. They may test for the type of cancer (eg: my mum was tested for the type of breast cancer and hers was oestrogen receptor positive) and know whether it could be caused by the gene but genetic testing is very expensive and therefore not routine.

Some info here. It's changed since I last referred to it:

www.nhs.uk/conditions/predictive-genetic-tests-cancer/

Herethere...

My Mum was tested after being diagnosed with ovarian cancer presumably because her sister died of breast cancer and between them they have 5 children, on our side there are 6 grandchildren inc 4 DDs. Possibly more on her sisters side.

I therefore assume they test because the repercussions of her passing on the faulty gene would be huge.

Like I said they would have tested me just in Mum and aunt having cancer, it was an added bonus that my mum had the gene as it made the testing cheaper.

I had no idea when my parents got in touch if they were telling me the truth, the GP still referred me though on the limited information I had, this was 18 months ago.

Mrs Tyler Joseph- I have a BRCA1 mutation and now work raising awareness of testing and helping people understand eligibility.

It's not the case that you always have to have an affected relative, and you don't have to ask your mum to be tested in order to be tested yourself.

I'm happy to chat this through with you- my email is [email protected] (you can see my story here so you know I'm not a random weirdo!) ovarian.org.uk/news-and-blog/your-stories/jo-stanford/