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BRCA gene testing

50 replies

incogneto · 11/05/2019 19:38

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

OP posts:
NoSauce · 11/05/2019 20:25

They won’t test you with just one family member having BC. I had 2 members - sister and Paternal GM and the consultant I saw for a breast lump said I wouldn’t qualify for testing.

Are you anxious about this?

gubbsywubbsy · 11/05/2019 20:28

I've been tested , you have to have a good few incidents of it in your family to get referred to a geneticist.. every direct female member in my family has had breast cancer but I don't carry the gene which is weird . Just bad luck.

Knockthreetimes · 11/05/2019 20:30

My partner was tested in january after his mum was found to have the gene. He just went to his GP who arranged the appointment with the hospital geneticist.

Hiphopopotamous · 11/05/2019 20:34

cks.nice.org.uk/breast-cancer-managing-fh#!scenario

Have a look here to see if you are eligible for referral to genetics based on your family history.

(Doctor, BRCA1)

KitNCaboodle · 11/05/2019 20:37

As others have said there needs to be a long line of it. My mum’s cousin was diagnosed with it a long time ago. As there was a strong family history my mum was tested too. She had the gene (and subsequently a few weeks later found out she did actually had breast cancer) and so me and my siblings were tested. I visited my GP for a referral and had a few years of ‘counselling’ as they called it, before I decided the time was right for me to have the blood test. Luckily for me it came back negative.

Hawkinsfirefly99 · 11/05/2019 20:48

I tested positive for BRCA2 after my paternal nan and aunty both suffered from breast cancer and ovarian cancer. My dad told me that he had the BRCA2 mutation so I simply made an app with my GP who referred me to the genetics department at my local hospital.

I had to have a counselling session before they were willing to do the test but other than that it was just a simple blood test.

I now have yearly MRI's but will be looking at getting preventative surgery in the future.

GoodPlaceJanet · 11/05/2019 20:52

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?

Hiphopopotamous · 11/05/2019 21:02

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?

You can't test for every genetic condition someone may carry, and plenty are worse than having BRCA1/2 - there wouldn't be any rationale for "screening" in this case.

Nitw1t · 11/05/2019 21:09

Sorry to hear about your gran. I have tested positive for BRCA 2 , over 10 years ago now.

My mum, aunt and sister all had BC (under 40).

Generally you won't be eligible for testing unless your gran was very young when she first got BC (under 45/pre menopausal) or there are other relatives with BC. It's much less likely to be genetic as BC it's a quite common, so they look for family history indicators (young, +ovarian cancer, men with BC, lots of relatives). Because BC is quite common cancer, it's often not genetic.

When I got tested the process involved comparing my genes with the relatives they knew had the gene. So they couldn't test me on my own. I think the technology has moved on but I still think the usual process is to test pairs, one of whom is known or strongly suspected to carry a gene.

I went to the GP and got a referral to the cancer genetics unit my other family members were registered with. You might be able to discuss with your GP if you are concerned and they can refer you if there is a strong enough family history. Then genetic counselling. Then testing. It all took a few months I think.

Sup3rCooper · 11/05/2019 21:17

Your Nan would have to test positive for the gene first before you could even take the first steps with this. It isn't just a test you book in for or anything and your GP won't entertain the idea I'm afraid.

mrswarthog · 11/05/2019 21:18

I live in a University City with a renowned medical school. I was asked at my GPs if I would consent to being tested for the BRCA 1/2 gene as well as ovarian cancer markers as part of a research project (I don't it was all clear). Also am part of a breast mapping/ 2 yearly mammogram program. It may be worth asking your GP if you could be included in any research.

BloomedAgain · 11/05/2019 21:21

Is it possible to pay privately to have the test?

SoonerthanIthought · 11/05/2019 21:30

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.

tribpot · 11/05/2019 21:32

Some info about private genetic testing at the bottom of this page from Cancer Research, BloomedAgain. Nuffield prices as an example can be found here.

DannyWallace · 11/05/2019 21:34

I have had the test. Just to let you know though the rules seem to change depending on where you live. As I've moved around some places make sure you have genetic counselling prior to the test, other areas will just test.
However as far as I'm aware you need a strong family history. Mine took a while to pick up as it's on my dad/grandads side. But every single female member of their family (so my auntie, and my grandads sisters and their girls) have all had the cancer or tested positive for the gene. X

kidsmakesomuchwashing · 11/05/2019 21:36

I had Brca testing in 2016 it's only a blood test. I came back brca2 positive (so is my mum, my aunt, my sis and my bro). I had an elective bilateral mastectomy in 2017.

DannyWallace · 11/05/2019 21:36

@SoonerthanIthought I almost decided against it. I at least held off (I didn't want to know while I was at uni and single as I was worried I would panic and it would change decisions I made in life). However I decided to get tested when I got engaged, as I was curious.

incogneto · 11/05/2019 21:36

Thanks everyone, I didn't know more than one family member had to have had it before GP entertained the idea of referring me for testing.

I do feel quite anxious about it. It probably doesn't make a difference but an aunt on my dads side has also had breast cancer. Not sure if that changes things somewhat

OP posts:
incogneto · 11/05/2019 21:37

@kidsmakesomuchwashing I'm sorry to hear that Thanks❤️

OP posts:
kidsmakesomuchwashing · 11/05/2019 21:37

Ps you can pay for a private genetics test if you don't tick enough boxes for NHS. It's about £400.

incogneto · 11/05/2019 21:38

Couldn't afford to have it done privately or I would to be on the safe side Sad

OP posts:
incogneto · 11/05/2019 21:38

Thanks @kidsmakesomuchwashing. The Nuffield link above says £800 for BRCA testing

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kidsmakesomuchwashing · 11/05/2019 21:39

Don't feel sorry for me, best decision I ever made. Surgery means I don't need to worry about it now in the future.
Depending on where you live the genetics services are different. Where I live the breast service is the national centre of excellence and you don't need to have as many relatives with cancer to get tested. I only had one relative.

kidsmakesomuchwashing · 11/05/2019 21:41

@incogneto Message me privately and I'll send you a bit more info. You don't have to go to your local genetics service. The hospital I go to is the national centre of excellence and they get referrals for NHS and private patients from all over the country and the world.

incogneto · 11/05/2019 21:41

@kidsmakesomuchwashing I think I'm definitely going to enquire about it. I've a GP appointment coming up anyway so it's worth asking about.

Like you, I would want to prevent it if I knew I had it so I wouldn't have to worry about it in the future

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