NHS now offering free BRACA testing to anyone with one Jewish grandparent

[Charlieradioalphapapa]

I’ve just read this on the Guardian online and have sent off for the saliva test kit. Eligibility is for anyone who has one Jewish DGP. As both DPS were both Ashkenazi Jews, I thought I’d fill in the online form. You just need your NHS number and the usual name, address, d.o.b,etc

Thought id post about this in case there are others, like me, who had no idea this was being offered. I know if you’ve had a known family history of breast or ovarian cancer, you would be tested, but this is for anyone of Jewish heritage.

Thank you for sharing this - I wish I'd thought to do so! I sent mine off a couple of months ago and I'm still awaiting results as there is a massive backlog.

I think it's very important to do this if possible as due to the Holocaust and other pogroms and persecutions it is quite likely there is no family history of cancer for many, as family members simply died too young to develop it but would still have passed on the gene.

Thank you OP. I wonder if two half Jewish grandparents qualifies. I will have a look.

I wasn't aware this was being offered OP, thanks for posting!

Humdingerydoo. That’s a very good point. And also in our DGPs time there wasn’t the technology to diagnose which cancers people actually had I imagine.

Saturnspinkhoop. It’s definitely worth finding out. Does two half Jewish DGPs = 1 whole one? 🤔.

It’s good to know about the huge backlog. Good luck everyone. It sounds a really good initiative.

DP just told me he's sent off the form for this. Bit scary, didn't realise the risks were so high for people with Jewish DGP. As ever MN to the rescue with lots of threads inc this one, covering the scary stuff, the reassuring stuff and the stuff in between- had not occurred to DP that for our DDs this might be very significantly life changing news 😓 but knowing that they (and he) could access screening and preventive care if he tests positive is reassuring. Hope everybody involved, whether getting tested or doing the testing ends up okay.

Breast cancer has been known about for centuries, if not millennia. The symptoms of advanced BC are extreme.

It might not have been talked about openly, being as it references women's intimate parts. But it's the sort of thing the older women would have spoken about. Though, yes, the Holocaust could well have broken that chain of older women passing down family history for many families. Nonetheless, surely there have been enough generations since then for patterns to show up?

Surely there have been enough generations since then for patterns to show up?

Of course breast cancer has been known about for centuries, what's different now is the genetic testing. People with the BRCA mutation are more likely to develop breast, ovarian and some other cancers. This mutation is much more common amongst people of Jewish origin.

I was involved in a trial that lead to the development of the NHS screening programme. Part of the reason the researchers started looking for the mutations in Jewish people is because they knew about those patterns of disease.

I was lucky in that my test confirmed I don't have the mutation and it put my mind at rest. If the screening shows you do have it, you would be offered extra monitoring and testing. It is well known that earlier detection of cancer gives people the best chance of a cure.

I can only speak for myself but my grandmother (Holocaust survivor - the only one in her family) passed away almost 30 years ago so when my parent was mid 30s. We have no patterns. No family history of anything, really. My grandmother was also 18 when the war ended, so would've been too young before the war to know about her family history. So I personally think these tests are very much needed :)

I am absolutely not saying the tests aren't needed. Nor that everyone will know their family history.

One half of my family was murdered during the Holocaust. I know virtually nothing about most of them as the one survivor never spoke about them. On the other side there were enough female survivors to create a repository of stories.

Maybe that one grandparent survivor carried the gene. But if there is no history of breast cancer in any of the grandparents' families, nor in any of the descendants so far, is there any need to have the test?

Is having the test simply because of Jewish heritage a knee jerk reaction? Is it truly necessary if there have been no cases of breast cancer in your wider family?

My science-minded brain would say that yes, it is necessary even without confirmed cases of breast cancer in the family. Just like only certain ethnicities are screened for sickle cell, only some babies are offered the BCG vaccine etc.

When I was at uni, 1 in 3 were said to get cancer. Less than 20 years later it's 1 in 2. So I'm all for doing what we can to fight that number as much as possible for the sake of future generations

Another question.

If you have adolescent or adult children, would you consult them before going being tested yourself? Because finding out that you carry the gene is not something that affects just you. It forces them to consider it, too. And they may not be in a position to cope with that knowledge or uncertainty.

If my mum, or even a sibling, got tested I would hope they'd share their result with me regardless if it's good or bad news but I wouldn't expect them to consult me before testing. I personally would want to know. I do get what you're saying though - you're essentially making a decision for other people! It's an interesting moral dilemma, so not sure there is a right or wrong answer. Only an answer that's right or wrong for each individual family.

So I am not sure I would take the test, although since I don't live in the UK its theoretical.

Only my fathers side is ashkenazi Jewish (mother converted) and as far as I know all the female relatives lived to a ripe old age, except those who died in the holocaust.

My kids will absolutely have to get tested though due to family history on my husbands side.

My observation is that if your parent tests positive, or you have a family history, its probably a good idea to get tested before 35 or so. I don't think I would encourage a teen to get tested, but once a bit older asolutely share the information and say this test is available.

I've been doing some more reading. Apparently BRCA genes are implicated in some prostate cancers. On my df's side there is a history of prostate cancer.

This is so interesting- thanks for sharing. I've sent off for it (no email received yet although it's been a few days - is this the same for others?)

Had been aware of this gene but had no idea about its association with male cancers so thanks for that - I've shared with relevant male relatives as a result of this thread!

No family history of any of this although of course we don't know about those who were killed at a young age. That said, those who escaped to the UK in time had pretty long lives in my family which must be a good sign as the stats for the BRCA gene look fairly terrifying.

Opalfrootee. I’ve not had any response to my email either. I sent off for a kit on 1 Feb.

We are phasing the distribution of testing packs to ensure our labs, who are processing the samples, can turn around the tests in a reasonable timeframe to ensure no one is waiting too long for a result once their sample has been sent. We will be distributing testing packs in the order that people registered, except for women over 40, who will be prioritised, and can expect to receive a saliva pack within the first 12 weeks. Everyone else can expect to be waiting up to 20 weeks for a saliva kit to arrive in the post to your home address. Once you send your sample back, you can expect to receive your results in the post within 16 weeks.

Abovw is the relevant para of an email I got today . Gives an idea of who is prioritised and likely waiting times for kits and results.

Just as an update, I got my results back this week. I sent my sample off at the beginning of November (I think!). So yes, a bit of a slow process but worth doing if you're so inclined.

Glad yours are back Humdingerydoo . That was quite a wait but definitely worth It. Hope all is well

My husband applied recently and knows there is a long wait list.

My test kit arrived yesterday . I wondered what the box was as it’d forgotten I’d requested it at the beginning of Feb. The info says the results should take around 16 weeks. Hope everyone is doing ok and have a wonderful Pesach

I got mine today! I think I requested it in early Feb.

It asks for my sex assigned at birth but I'll overlook that...maybe a discussion for another board 😅

We had our results within 6 weeks, we have confirmed brca2 genes in our Paternal grandparents. So far no one else who has tested below them has had the mutation. My df refused to test himself but said he didn't mind me testing. If I'd had the mutation it would have meant he did as it can only be passed on from those with the mutated gene.

0palfrootee. Same here. Beginning of Feb. Good luck.

TerrysOrangeScot. 6 weeks for the results is really good. So you dont have the gene? I hope I have that right.