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?

What are you trying to find out? Or expecting to discover?

I'm Jewish, so eligible for BRCA testing. No history of breast or ovarian cancers AFAIK, but history of prostate cancers on one side. Prostate cancer can be linked to BRCA.

I'm currently under the genetics clinic regarding breast cancer. I'm doing it because I want to live as long as I can for my child and if I can get screening then why wouldnt I take that option. If my mum and nan had that choice they'd probably still be here!

I’ve had genetic testing. My nana (and her sisters) have Brca. My mum was eligible for testing and held off for years - fearful of the consequences for us. She was tested when I had early detection of cervical cancer in my twenties. I’m so grateful that our family spoke openly about our risks, as it enabled me to access testing and treatment that otherwise - could have meant a very different story of my life (currently typing this with my third baby, 5 days old in my arms).

I know each and every persons story is different, but for me, knowledge was power.

There is support available alongside the testing programme:

Speak to a genetic counsellor via the NHS helpline dedicated to this service on +44 20 3437 6001. The helpline is open Monday-Friday 9am-5pm with extended hours until 7pm on Wednesdays.

Speak to one of Chai Cancer Care’s trained counsellors by calling 0808 808 4567

Fwiw I am Ashkenazi and will have the test done, although no recent family history of breast / ovarian cancer. I've discussed it with my adult DD and we agree it is better to know and be prepared.

I'm not afraid of knowing for myself (I think). I am worried about putting the burden of that knowledge on my dc. Both in terms of what it might mean for their mum, and of what it might mean for them. One in particular has fragile mental health.

I don’t see why you wouldn’t? I don’t mean that rudely but BRACA runs in my family, my dad was tested and has it, me and my siblings then got tested, 2 of us don’t but my sister does. She’s since had her ovaries, breasts and nipples removed and breasts reconstructed. It’s better to know and take all medical options available, than potentially get poorly later down the line. Plus it means any children have the best chance of future screening. Ovarian cancer is what shows in my family.

hopefully if you get tested it comes back negative and you can rest assured x

I've had genetic testing. Not for the same thing though.

Thanks. I shall call them.

I had the sort of ovarian cancer that can be linked with BRCA. The NHS kind of behaved if I had no choice in testing, but I would've done anyway, as there is action that you can take to reduce risk, and I would want my DD to be able to make informed decisions, and also to consider her own family planning. It is hideous though waiting for the results because it isn't just about you, the impact on DD was the worst consideration for me. I did learn that that would have been plenty of time for her to have a family before the likely age of onset, although obviously there would need to be some sort of screening of embryos if she was positive. Anyway, they were all the things that went through my mind, but mine came back negative. Good luck, and fingers crossed that little history of it is a positive sign for you, the pancreatic cancer could just be random.

IME the NHS talk you through the options and implications before you get anywhere near being tested and getting the results. I opted to know before having children, as a first cousin died from a life limiting genetic illness.

I think I would go for the test because unlike some hereditary diseases, there is positive action you can take to reduce your cancer risk if you know you carry the gene.

My grandmother died from breast cancer that wasn’t picked up quickly enough and spread. My mother is alive and cancer free 10+ years after being diagnosed with breast cancer because she sought medical help at the first sign of a problem. If you know you have the genes that put you at a high risk of cancer, you can choose to have surgery before any problems arise. If your children have the genes, knowing that allows them to make plans around it eg girls might choose to have children in their 20s and then have preventative surgery.

I don’t live in the UK but where I am it’s not possible to get genetic testing without going through counselling first.

I have a genetic condition that causes bowel cancer. I was in two minds about whether to be tested as there is no surgery you can have to eliminate the risk of bowel cancer, you can only have screening and you can have that without the genetic test. However what was swaying me towards it was discovering there is also a link to ovarian and endometrial cancers. So I can have a hysterectomy to eliminate that risk. Before I could have the testing done I discovered that I had bowel cancer so that was the question answered already. I’ve had successful treatment and will be having a hysterectomy soon.

Of course I am worried for my children but ultimately I can’t change reality for them. They are still u/18 and screening isn’t recommended until 25 so they still have time on their side to think about it once they are adults.

I had genetic testing through the NHS for Lynch Syndrome. You get genetic counselling as part of the process, and they didn't pressure me to test at all.

Medics had pressured me in the past but I preferred to continue with screening on the assumption I was positive until I was at a stage where testing would actually influence a real decision. Once I'd completed my family I got tested as I likely would have chosen a hysterectomy if it was positive. It was negative.

I would get a referral, it may be slow. You don't need to go through with it unless you're truly ready - it can't be undone, so don't do it unless you're ready to deal with either result. Good luck.

Are you UK? I got a decent amount of discussion, and counselling when going through it with NHS. It helped a lot. Getting my positive result (my mum was already tested for BRCA) wasn't as bad as I thought as at least I could plan and the uncertainty was removed.

I had screening IVF to have my baby (NHS funded as I was positive for the gene), I get yearly MRIs until I'm old enough for mammograms, and doctors take any symptoms seriously (e.g pelvic pain, lumps) and don't dick about. For me it has all been worth it but there's no right answer.

Hmm. Interesting. I had no counselling at all, I wonder whether it's different once you've had cancer or whether my hospital just didn't do what they should have.

I think it's different once you have cancer, because the genetic test results will inform your treatment. Whereas if it's because of family history but you're currently healthy, the implications are different and they need to be sure people know what they're getting themselves into (or not getting themselves into!).

No counselling.

Ah that's crap OP. Ask your GP if it's possible to be referred for genetic counselling? It's a big decision.

You can choose to have pre-test counselling on the numbers I shared above and if you get a positive result they do offer post test counselling via phone and an onward referral to your regional genetics service to look at planning for the future and any risk management you might want to do.

Results by post, that's shocking. I've not forgotten the kindness and care I had from the genetic couseller who gave me my results. That was a decade ago and a lot has probably changed sadly

We had genetic testing for Tay Sachs, as we're Jewish, I think we just wanted to rule it out basically.

There is definitely genetic counselling available under the Jewish BRCA testing. I've done the test and was offered counselling at about three points during the process.

There is! Have you explored that website? It's mentioned several times (I've been looking into it for myself).