How do you decide whether to have genetic testing?

[Dilbertian]

It's not a neutral thing to do, because if I get a positive it affects my dc.

How do I decide? Is there any organisation I can talk to?

Also here, in their FAQs:

I've been through the testing. You do get counselling at each stage.

Remember it's 50:50.

50% you don't have the gene and therefore your DC are in the clear.

If you do have the gene, it's still 50:50 for each of them that they don't.

Ideally you'd have a picture what you would do with the information, should it be bad news. I have a friend who had a lot of ovarian cancer history in her family tree & decided not to test. She felt happier hoping for the best & reducing her lifestyle risk factors rather than embracing a hyper-medicalised approach (removing ovaries, I suppose). I respected the confidence she had in her decision.

I'd only just started exploring the website. Was a bit worried that all I had found (at the time I posted) did not mention anything about counselling.

@ColleenDonaghy I already had bowel cancer when I had my genetic testing and I still had to go through counselling. My counsellor was lovely and very informative. This was in the public health system in Australia.

There is still a lot of information to process even after a cancer diagnosis regarding risks of other cancers and the risks for family members. Not just your own children but siblings, cousins etc.

@SierraSapphire I’m sorry you were not offered counselling.

Is the Jewish brca test comprehensive ?

I had a 23&me test done and discovered Ashkenazi Jewish ancestry on dads side (we don't talk). 23&me also test for three common variants (there are over 4000 in total) ... the most common ones in Jewish people.

Is this test fuller? More variants detected?

My aunt (dads side) died of breast cancer in her 30s.

The genetic testing wasn't going to inform my treatment Colleen, because it was caught very early. Now I think about it I never actually got my results properly either, I was just told by the oncologist that he thought they were negative, he'd seen some results and mine were the only ones he tested recently and he would have remembered if they were positive. Nobody gave me that other number so it's good people are raising awareness. I do think the decision is different when you have kids that it might affect and it's not just your life.

I went to a genetic counselor on the NHS, but that must have been 20+ years ago.

That mapped out my family and whether there was likely to be a genetic cause.

I chose not to go further.

In our family, those diagnosed with cancer didn't have counselling (in Ireland but the systems are similar) and those of us in the next generation who were tested pre cancer did (both Ireland and NHS). It does seem to be the way it's done. In our case, the family history was enough to be diagnostic of the family and anyone in my generation could've had the testing without the previous generation being screened, but the results from our parents pinpointed the gene to look for as there are a few that can be involved with Lynch.

Those tested following a cancer diagnosis were on their second or third cancers so already knew they had it.

With Lynch, the result of the test does inform the treatment. So for example, my dad had three separate bowel cancers - not recurrence, three different primaries over more than 20 years. So if more had been known first time around they would have been more likely to recommend the full removal of the colon rather than resection. Or both endometrial and ovarian cancer can happen with Lynch, so once one is diagnosed a full hysterectomy should be considered rather than just removing the womb or ovaries as would be done otherwise. Also, once cancers are more advanced, Lynch cancers are likely to respond very very favourably to immunotherapy so it should be considered from the off.

On the NHS, when cancer is diagnosed they do genetic mapping pretty much as standard because it tells them which targeted therapies might work. This mapping can show up things like BRCA or Lynch but mostly just the mechanism of the individual's cancer and give the doctors more info than just "lung cancer" for example. I think they also look for, for example, Lynch and FAP if someone has bowel cancer at a young age. Obviously I fully understand the repercussions in terms of worrying about other subsequent cancers and children etc but IME it is very standard to be tested once diagnosed with a cancer.