Genetic results question

[Regenallotment]

My gynae follow up after my over range Ca125 result has come through. It’s next Tuesday..

I’ve got DNA data from an Ancestry DNA download from a few years back, I’ve found a series of OC/BC related genetic mutations by using the free upload service of Genetic Genie and a few others.

Would this information be useful? What do NHS think of using Ancestry DNA?

BRCA2 CA

ABCG2 GT

NQO1 GA

CDH1 GC

Plus a bunch of others linked to thyroid (I have thyroid cysts also being investigated).

[Lyndy2]

Hello, I suspect you may get blank looks as the NHS struggles to link two of its own hospitals together!

However if you are pushing to get genetic testing it would be worth mentioning this and any family history of cancer (not just OC).

My testing was done at Addenbrookes by a geneticist who was fascinating on the subject…There’s a lot more depth than you would get through Ancestry which is focused on demographic links and family traits.

Best of luck xx

[Doglover1410]

I agree with Lyndy, I doubt whether they’d look at it but I would definitely push for the NHS testing.

Mine was also done at Addenbrookes and the geneticist was really interesting to talk to (not like the one I had seen 15 years before who was a b**ch!!)

Good luck x

[Eriksendi]

my testing for the BRCA gene was done at my local hospital but a specialist came down from St George’s and explained everything. She was extremely interested in my family history and any possible genetic links. She also spoke about the results and possible effects and how I wished to receive the results. I guess it depends on where in the country it’s done but I would certainly mention it.

[Regenallotment in reply to Eriksendi]

ah thanks that’s great.

[Trickysite]

ask your onc,

[Regenallotment in reply to Trickysite]

i don’t yet have a diagnosis x

[OvacomeSupport Partner My Ovacome Team]

Dear Regenallotment,

As some of our other members have suggested, you would need to speak to your local clinical team to discuss your situation and family history to find out if they will offer you genetic testing, if this is something you're concerned about.

Ancestry DNA state on their website that: "This DNA Data download is for your personal use and is intended for genealogical research and general information only. It is not intended to be used for medical or health purposes..."

These type of tests do not look at your whole genome, and it is not uncommon for them to show errors in the data files. The type of testing done on the NHS is very different to these heritage tests and run only by approved laboratories.

We would always suggest you avoid direct-to-consumer genetic tests and leave interpretation of genetic results to genetic experts who can explain the implications. Instead, speak to your GP or clinical team, who will be able to explain whether genetic testing is something you could think about.

If you wanted to get an idea as to whether your situation and family history might make you eligible for genetic testing, you can have a look at the Hereditary Cancer Risk Tool that was created by our friends Ovarian Cancer Action. This will also give you a print out to take to your team explaining your family history. You would need to collect information about both sides of your family in order to assess your potential risk. You can find the tool here: ovarian.org.uk/risktool/

If you have any questions about this, you can call the Ovacome support line on 0800 008 7054. We are open Monday to Friday, 10am to 5pm.

Best wishes,

Jo

Ovacome support

[Regenallotment in reply to OvacomeSupport]

thanks, the side these genes most likely come from is mostly men (Dad is one of 7) so I only have my paternal grandmother who recently passed with breast cancer in the history. Before her most of the women died quite young but I don’t have details it was pre 1960s. I’ll look at that link and talk to the team. Much appreciated 💚