Predictive genetic tests for cancer / BRCA - experiences?

[thetapeworm]

Not my usual kind of post but having spent yesterday at another family funeral that once again came about due to cancer and after chatting with a cousin I haven't seen for a while I have concerns about inherited cancer genes. I'm not worried about myself as such, it's my young (8) daughter.

All the bits I've read online about testing obviously tell you to go speak to your GP about BRCA1 and BRCA2 testing as well as there being 100 other potential genes to look out for but my GP isn't taking routine appointments at the moment and this seems pretty low down the pecking order in the grand scheme of things.

I just wondered if anyone on here had any experience of going though this and if you were taken seriously by your GP. I kind of feel like I'm being a bit of a hypochondriac / worrier.

The details I've seen are very much geared around testing a family member with cancer first to then assist with your own test but I've pretty much run out of family on my side now so that might be an issue.

https://www.nhs.uk/conditions/predictive-genetic-t...

Anyway, interested to hear your thoughts even if you haven't done this and if you have been tested, privately or via the NHS I'd be really interested to hear more about it if you don't mind talking.

[jackh707]

Private genetics testing is a can of worms for insurance, anxiety and other reasons.
The test is only as good as the database used.

Speak to your GP, they can take a family history.

If your family history is suggestive of a BRCA Gene or other you will get referred to genetics for further discussion/advice.

[BevR]

thetapeworm said:

Not my usual kind of post but having spent yesterday at another family funeral that once again came about due to cancer and after chatting with a cousin I haven't seen for a while I have concerns about inherited cancer genes. I'm not worried about myself as such, it's my young (8) daughter.

All the bits I've read online about testing obviously tell you to go speak to your GP about BRCA1 and BRCA2 testing as well as there being 100 other potential genes to look out for but my GP isn't taking routine appointments at the moment and this seems pretty low down the pecking order in the grand scheme of things.

I just wondered if anyone on here had any experience of going though this and if you were taken seriously by your GP. I kind of feel like I'm being a bit of a hypochondriac / worrier.

The details I've seen are very much geared around testing a family member with cancer first to then assist with your own test but I've pretty much run out of family on my side now so that might be an issue.

https://www.nhs.uk/conditions/predictive-genetic-t...

Anyway, interested to hear your thoughts even if you haven't done this and if you have been tested, privately or via the NHS I'd be really interested to hear more about it if you don't mind talking.

There are very few 'predictive' mutations for cancer, have the rest of your family had the same kinds of cancer?

As you say its not a priority now as your daughter is only 8 and while I understand it is a worry would there be anything you could do except worry if the results came back that she was a carrier? I am not a parent but I don't think I would be able to talk to a child and explain this sort of thing without scaring them (it can be difficult for most adults).

I would avoid any private genetic testing company at the moment for a number of reasons, predominantly that the statistical software they use is pretty poor and can cause unnecessary worry about things beyond your control and that you don't own the data.

By all means talk to your GP, they will do a better job at putting your mind at ease than anyone on a forum. Just based on the age of your daughter I would wait ten years, technology and understanding will have moved on.

Edit: in the link you posted the lifestyle changes that may be recommended if a test returns a positive are for women over 35 and men over 50.

[thetapeworm]

Thanks for your replies.

The family history has various cancers so maybe we're just an unlucky lot rather than specifically lumbered with one bad gene.

I'll chat with my GP at some point, it's just on my mind currently after yesterday I guess, I hadn't given it a lot of thought previously as I'm generally an "ignore and hope for the best" kind of chap.