BRCA testing. : Just to confirm, that while I... - My Ovacome

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BRCA testing.

Jessica-DianeB profile image
9 Replies

Just to confirm, that while I know this test is available to everyone diagnosed ( has been for 6 months now ) via information from Target Ovarian .

It appears this was offered at my hospital through a pilot scheme. Previously to this I would have had this test done at Birmingham woman's Hospital.

Just for reference as I know last week we discussed in here whether this may be a new thing rolled out across NHS England. But I believe from the statement ( shown in photo ) This is not the case yet xx

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Jessica-DianeB profile image
Jessica-DianeB
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9 Replies
Lily-Anne profile image
Lily-Anne

I had bloods at the hospital and filled in a questionnaire a couple of years ago. Although I’m BRCA negative I am P53 positive. Apparently a random event 🤷‍♀️

LA xx

Jessica-DianeB profile image
Jessica-DianeB in reply toLily-Anne

Ah I'm P53 positive to. Only know from pathology report. Not sure what it means! Xx

Sunfleury-UK profile image
Sunfleury-UK

I thought that any woman now diagnosed with ovarian cancer (except mucinous) was able to access BRCA testing.... from about last year onwards. Not sure if just NHS England though... SX

Neona57 profile image
Neona57

I was sent for counselling at a local hospital but was told I would not get the test.

Jessica-DianeB profile image
Jessica-DianeB in reply toNeona57

I spoke to Target Ovarian they asked me if I'd had test. I said no abs they urged me to pursue it. I did and it just happened that my own hospital were offering it as a pilot scheme. I was one of the 1st consents to be done by my gynaecologist surgeon.

I think some hospitals are very forth coming with offering it at the start and others perhaps don't look into it until the patient isn't responding very well to platinum and therefore is looking for avenues to open up the option of Parps. Xx

Sunfleury-UK profile image
Sunfleury-UK

OvacomeSupport ... could you please advise or link to current guidelines re qualifying for BRCA testing? Many thanks Sx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply toSunfleury-UK

Hello All

Here is a link to the current NICE guidelines for BRCA testing: nice.org.uk/guidance/cg164/...

NICE guidance recommends BRCA testing for anyone with a 10% chance of carrying a mutation. Scotland and Wales also follow the 10% guideline.

This means those of you with high grade serous epithelial cancer should be eligible for genetic testing, as 15% of women with high grade serous ovarian cancers have the BRCA mutation.12% of women with endometrioid ovarian cancer have BRCA mutations and so are also eligible. If you have these cancers and haven't been tested you can talk to your team about being referred to a genetics service.

It is also worth asking your team if your tumour was tested for mutations. This is because genetic mutations can be inherited (germline) or occur in the tumour (somatic).

If you have clear cell ovarian cancer, the BRCA incidence is 7%, so does not meet the NICE threshold.

If you have mucinous or borderline ovarian cancer it is unlikely you would be referred for testing, as an increased risk of BRCA mutations are not associated with these types of ovarian cancer.

These are broad guidelines and there are genetic mutations other than BRCA, so if you have any concerns about this, do talk to your team who will be able to look at your individual history and advise you.

I hope this is helpful, do message me if you need any further information.

Best wishes

Anna

Ovacome Support Service Manager

Jessica-DianeB profile image
Jessica-DianeB in reply toOvacomeSupport

Very helpful Anna :)

Neona57 profile image
Neona57 in reply toOvacomeSupport

Thank you-explains why I didn't get tested.

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