BRCA gene testing

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Has anyone been tested for the BRCA gene? What is the procedure for this?

My Nan currently has breast cancer and I want to be tested for the gene to be safe. Do I just go to the GP and explain the situation?

TIA

I don't want to derail this but I wonder what the process is for someone who is adopted and unaware of any family medical history?

My mam got tested after she got diagnosed with ovarian cancer as my grandma had suffered with breast cancer x2 whom was also adopted so we didn't know any further back.
Think it also worked in my mams favour that my grandma has it fairly early (38 years old).
Luckily it came back negative.

Has anyone here with strong indicators (several relatives etc) decided not to be tested? I suppose that's the point of the counselling, so some probably do decide against it.

Not BRCA, but HNPCC. I so far have not been tested as I worry about insurance implications. I just proceed as if I'd tested positive. Don't know if I'd feel the same about BRCA as maybe I would consider a mastectomy, but there's no way I'm up for having my (for now) healthy colon removed, so I'll stick with screening for now.

OP, genuinely saying this to be helpful and not a dick: One (presumably) quite old relative having breast cancer is frankly not remarkable at all. Loads of women get BC and the survival rates are great (obviously depending on the specific cancer, stage at diagnosis etc, I'm speaking very generally here). If you're feeling very anxious about it, maybe speak to your GP.

One of the benefits of getting private testing is that they do full panel testing. There are more genes than just BRCA 1 and 2 that are associated with breast / ovarian cancer.

If you have any ashkenazi Jewish heritage you can be tested regardless of whether you have any family history as you would be at much higher risk than the general population,

Remember it’s also a risk of ovarian cancer too, and that’s much harder to treat than breast cancer

@MindyStClaire regarding insurance there is a moratorium on declaration of genetic testing at the moment - ie they can't ask you and you don't have to declare it.
Obviously it could all change in the future especially as Matt Hancock is now on the genetics band wagon, but at least for the foreseeable there's not way any insurance policies can be affected by you getting tested.

Thanks Danny. If a person wouldn't opt for a preventive mastectomy for a positive result, what are the other benefits to knowing you're positive, I wonder? I appreciate nobody will know for sure whether they'd opt for a mastectomy until they get the result - that's one of those things you can't know until you're in that position, I suppose. And of course some (many?) people would rather have the certainty either way.

Yes, I'm aware of that kids, thanks though. I've already been asked a question on a critical illness form though (reputable company) that affected the company I chose. And I worry about changes in the future. It genuinely doesn't prey on my mind so I'm happy enough not knowing for now. If I ever do feel like a positive or negative result would have a big impact, I will get tested.

@SoonerthanIthought you can have annual MRI screening from the age of 30 instead of surgery. Obviously screening only picks up a no / yes cancer but by having annual MRI screening it would hopefully be picked up at a very early stage rather than the standard over 50 3 year mammogram screening.

@MindyStClaire they can ask you if anyone in your family has had cancer / other diseases (ie do you have a family history). But they can't specifically ask you if you've had genetic testing done. If they are asking you this specifically they are breaking the rules and need to be reported.

Thanks Mindy, that is interesting - yes I suppose the decision does depend partly on what the possible treatment is.

Thanks kids - I wonder if the NHS would offer someone annual screening if they had an indicative history, even if they didn't want to be genetically tested? If not I suppose you might be able to have it done privately (though ££££ obviously!).

Is it MRI screening from 30? I had heard that mammograms weren't necessarily as effective under the age of 40, so sounds as though MRI is the preferred test for the young?

The NICE guidelines have changed recently, depends on who their age and whether it was breast or ovarian cancer.

Print off the current guidelines and if you qualify ask for a referral.

I guess the tide is changing in terms of it's cheaper to offer preventative treatment than treat cancer.

First thing you are told to do is sort out your life insurance though which is rather sobering.

kids I'm reluctant to put much detail as I can't quite remember all the details now. I was looking to change my policy from one company to another, and when I saw the question I felt there was a risk the policy wouldn't pay out on diagnosis so I just stuck where I was rather than have the worry.

It was a reputable company, a huge multinational and I'd be astounded if they were getting away with breaking the rules. There's no way a company that size won't have lawyers pouring over every little detail. The question was something along the lines of "Has a doctor advised you to have genetic testing" or similar. I think there was another question about actually having been tested (no conditions specified, I remember the previous policy asked about FAP and Huntington's as I think insurers are allowed ask about those) but since I haven't been that obviously wouldn't have mattered for me. Questions about family history wouldn't bother me either.

I'm not actually that familiar with the laws - perhaps the data is gathered but doesn't affect payment or something. Like I said, it wasn't a big deal for me to stick where I was and I didn't want the worry, so I didn't switch from Giant Insurance Compnay A to Giant Insurance Company B.

Clinic I went to said only 50% decide to go ahead with testing post first counselling appointment I was shocked it was so low.

@SoonerthanIthought
There are people that have very strong family histories of breast cancer but actually come back BRCA negative. There's clearly some sort of generic / familial thing going on but it's not BRCA. I know where I am these women qualify for MRI screening from 30 even though they are actually BRCA negative.
MRI is the scan of choice for younger women as mammogram isn't as effective when the breast tissue is denser in younger women.
As someone else has said the NICE guidelines are a good place to start but still many NHS trusts offer different services. I know I'm exceptionally lucky where I am and the services are much less restricted than in other places in the country.

You can have a very strong family history and just not have inherited the gene.

You can have strong family history choose not to be tested and still qualify for the additional screening.

At least at my "local" centre.

"The question was something along the lines of "Has a doctor advised you to have genetic testing" or similar."

I suppose there though the answer would be unaffected by whether you had actually had the test!

All my siblings have tested positive for BRCA2 but I've not been for the test yet. Must get around to it as apparently having it means cancer can spread much more aggressively.

"Clinic I went to said only 50% decide to go ahead with testing post first counselling appointment I was shocked it was so low."

That's interesting random - did they say what sort of reasons people had for not going ahead? Would be interesting to know what emerges from counselling that makes people decide against.

You have to consciously make the next appointment and for whatever reason I guess they don't!

As the chance is 50/50 perhaps they are happy with those odds, perhaps they don't want to sort out life insurance, ignorance is bliss, don't want surgery if it's positive, perhaps they are young and rush off to have DC. I knew I wanted to know, perhaps I'm the odd one 😂

@RandomMess you're not the odd one out. I wanted to know too and I wanted to take control of the situation and have the surgery. My mum had BC when I was 11 and I categorically didn't want my kids to see me go through that.

I have 4 daughters so clearly I wanted to know for their sake. I was tested because my Mum tested positive, although in her 70s her sister died at 41 of very aggressive BC.

Being 40 and done with having babies it was any choice to have had surgery had I tested positive, as I was going through the testing process my good friend was in the last 6 months of terminal BC Lump to death in 27 months 😭

My GP was hopeless with this and didn't have a clue. He was completely uninterested in referring me despite a strong family history.

If you're in London or the South East then ask your GP for a referral to Guy's Hospital - they have some info here:
www.guysandstthomas.nhs.uk/our-services/genetics/clinics/specialities.aspx

If not, then try McMillan cancer charity and so on for advice on who your GP can refer you to - I have no confidence in my GP so investigated independently - make sure you do the same if your GP is dismissive.

Has anyone here with strong indicators (several relatives etc) decided not to be tested? I suppose that's the point of the counselling, so some probably do decide against it.

I can get the test but I don't want it right now. I don't know if I will do later but right now, it's a no.
I can't imagine if it comes back positive the stress and worry it would cause me. (I have previous shit record with mental health/overthinking/anxiety)
I'm currently happy to go to the GP with any changes or issues - Within the last few months I have had a scan to check all is ok with my reproductive organs (symptoms of ovarian cancer)
My breasts are continually changing, by the month it would appear, so I had to go the breast clinic to be checked and got the all clear for both.
I may change my mind at a later point, I don't know.

I have BRCA2. My mother died aged 50 with ovarian cancer, her mother at about 70 with breast and/or ovarian (records are long gone) & I had breast cancer myself at 49.

I hadn’t planned to be tested but my brother has 3 daughters & 3 granddaughters, & I have 2 daughters, so it seemed sensible that I should.

In the event, of the 2 families, so far I am the only one who has it. My brother hasn’t, so his descendants are all OK, & my daughters have been tested and are negative, so big relief all round!

My ovaries & tubes have now been removed & I’m having annual mammograms.

My sons do have an increased risk of some forms of cancer so they should be tested but it hasn’t been discussed yet.