My Ovacome
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Gene Testing

Hi my lovelies,

Can anyone recommend a private gene clinic in the south west area? Our local hospital only tests for the BRCA1&2 genes which is no good as my special person has been tested and is negative we have been told it could be a different gene so we want to go and get it done privately so we can go to the next few appointments armed with new information that could help a future reoccurrence and most certainly help future generations of the family xxx

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When the NHS did my genetic test I thought it was just BRACA, but they did more, and discovered a mutation which is implicated in ovarian cancer. Unfortunately they have done no work on it to see if any treatments work better.

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I would be careful with the clinic you choose. My cousin lost her mum to ovarian cancer, not my blood relative, so the fact I have OC on her dads side had worried her. She sent me the report which was full of inaccuracies and didn’t actually prove to be any help despite the cost

Personally I would ask for a referral through the GP and ask to include tumour testing too

LA xx

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Thanks LA I wil definitely put that to my special person xxx

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Even if they can’t do the testing on the NHS most hospitals have the relationships with the reputable screening services. Eg Christie’s prof of genetics who sees oc patients to see if to do screening for mutations eg brca using Leeds teaching hospital service. I paid for my testing but he guided and set that up.

When I wanted to have my tumour profiled. Again Christie’s organised it. I just paid - £5k. They used Caris platform. These results showed what mutations I did or didn’t have, relevant gene expression. Also which of existing therapies were likely to be effective. Well worth it.

If your local hospital don’t test, they may be able to suggest what the major centre to you can do.

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Your GP can still request these on a private basis if you want them. You just need to ask.

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I’ve looked up the full details of the tumour profiling that I had done. Including who does it and the uk agent. pM if u would like the details and to confirm what a report looks like

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A good way to get the testing done is via a trial which requires this. I hadn't realised that there are two lot of potentially useful info:

germ-line - what's in us - I'm neg for anything interesting with this

somatic - what's in the sampled tumour - mine did have some potentially interesting leads.

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