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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Best place for private BRCA Gene testing

5 replies

Canyoudigityesyoucan · 17/07/2024 15:31

My mother, maternal aunts and maternal great aunt all died from ovarian or breast cancer under the age of 50. My mother was diagnosed at 31,and died at 49.

Unfortunately, the NHS does not believe I meet the criteria for gene testing with them for the BRCA gene.

Does anyone have any recommendations of places to go privately and any experiences? London/South East preferably. I am 35. Thanks!

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AnnaMagnani · 17/07/2024 15:46

Who has told you that you don't meet the criteria?

You prompted me to look at the NICE Guidance and it clearly says

Offer a referral to secondary care to people without a personal history of breast cancer who have one first degree relative diagnosed under the age of 40, or one first degree and a second degree diagnosed at any age.

You clearly qualify on both. There are additional criteria including ovarian and you qualify on those too.

Batinahat · 17/07/2024 15:48

I fell short of the NHS scoring by 2 points so couldn't get tested on NHS. I had mine done through Spire and they were good/efficient. It's not offered at all Spire hospitals but I travelled to do it at one a couple of hours away. It was one face to face appointment then they sent me a test kit.

Canyoudigityesyoucan · 17/07/2024 17:02

AnnaMagnani · 17/07/2024 15:46

Who has told you that you don't meet the criteria?

You prompted me to look at the NICE Guidance and it clearly says

Offer a referral to secondary care to people without a personal history of breast cancer who have one first degree relative diagnosed under the age of 40, or one first degree and a second degree diagnosed at any age.

You clearly qualify on both. There are additional criteria including ovarian and you qualify on those too.

Thank you for your reply!

I found a lump in my breast last year and was seen on the 2ww pathway (turned out to be nothing!) but when I was there they suggested I could and should be referred to the genetics team for review for testing.

I completed a full family history and sent it to the genetics team and after 6monrhs I got the letter today saying I don’t meet criteria.

I will challenge this given the NICE guidelines; but what slightly complicates it is my maternal aunt and maternal great aunt are estranged (due to adoption) and we don’t have copies of their death certificates to prove death and this is what the genetics team asked for. But this would be irrelevant as my Mum (who’s detailed diagnosis and death cert I do have!) would mean I qualify.

Ill push back on their refusal to refer, thank you!

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AnnaMagnani · 17/07/2024 18:29

@Canyoudigityesyoucan unfortunately the NICE guidelines only say you should be referred, not what happens next. I'm finding it hard to google that!

Are you or any of your relatives Jewish? Because the NHS has recently launched a programme for BRCA testing with 1 or more Jewish grandparent. I can't see how they would know except by you saying so

https://jewishbrca.org/

Canyoudigityesyoucan · 17/07/2024 21:08

AnnaMagnani · 17/07/2024 18:29

@Canyoudigityesyoucan unfortunately the NICE guidelines only say you should be referred, not what happens next. I'm finding it hard to google that!

Are you or any of your relatives Jewish? Because the NHS has recently launched a programme for BRCA testing with 1 or more Jewish grandparent. I can't see how they would know except by you saying so

https://jewishbrca.org/

No, no Jewish heritage. They’ve said I can have mammograms from 40+ but I don’t get the gene testing. I’ll just go private I think!

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