Paying For Genomic Testing: Has anyone paid... - My Ovacome

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Paying For Genomic Testing

Worrieddaughter95 profile image

Has anyone paid privately for Foundation One genomic testing?

My mum is more than likely in her first recurrence after a short NED.

I don't want to put her through treatments that aren't prescriptive for her.

Any advice would be great :)

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Worrieddaughter95 profile image
Worrieddaughter95
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8 Replies
Notage profile image
Notage

I may have already answered you in another thread so won't repeat but I'd say do it. The only two risks apart from financial as it's not a cheap undertaking is that they don't find an actionable mutation and if they do the drugs recommended aren't available in the UK under the NHS.. We are progressing in the UK with genomics but it feels that gynae cancers particularly rare ones are the poor relatives in relation to other cancers in terms of access to genomic profiling under the NHS or the drugs available. My personal view is just do it and then battle for the drugs (if any are recommended) after. It might be the drugs recommended are available so like you say your mum will avoid the trial by drugs unnecessarily. It's a fairly easy process but you will need the hospital to sign the form to release tumour samples and take blood (you can get blood taken by other routes). Then it all gets shipped off and tested. Happy to discuss further.x

Trickysite profile image
Trickysite in reply toNotage

I am Brca2. Does that mean I have had genomic testing? Or is there another type of genomic testing I should ask my onc about? Emma x

Notage profile image
Notage in reply toTrickysite

BRCA testing can undertaken to confirm if you have either inherited the gene or you have a BRCA mutation within a tumour (a certain percentage of people with the BRCA in the tumour may also have an inherited BRCA gene but not everyone). It is possible to have more than one mutation. Genetic testing is generally available free on the NHS particularly if someone has high grade. Genomic testing doesn't appear to be available for ovarian cancers at the moment on the NHS. This can be bought privately. It is a really complex subject so could I suggest contacting Ovacome: ovacome.org.uk/testing-for-... a Please also do give their helpline a call (they are fab and will be able to answer your questions): You can call the Ovacome support line on 0800 008 7054. open Monday to Friday, 10am to 5pm. They also have a video of a webinar talking about the difference between genetic and genomic. Best of luck.x

Neona profile image
Neona

My oncologist expressed the view that there was no point because he wouldn’t have access to any different drugs anyway. However I know I would do it if had the money !

Formydearmum profile image
Formydearmum in reply toNeona

thanks so much for your insight, I’m hoping any results could help us with any future trials or off label drugs x

Trickysite profile image
Trickysite

Webmd website has some easy to understand articles on genomic testing and also a list of questions to ask one's onc about it. Emma x

Worrieddaughter95 profile image
Worrieddaughter95 in reply toTrickysite

Thanks Emma :) x

georgiageorgia182 profile image
georgiageorgia182

Hi Worrieddaughter95 - Im just wondering if you went ahead with this and if it was helpful? (Coming from another worried daughter of a similar age!)

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