Genomic testing in UK

Hello ladies

After reading through many of your posts over the last few weeks following my MBC diagnosis and receiving some advice on my first post on here regarding pursuing genomic testing I did just that when i had a face to face follow up with my oncologist who is lovely by the way.

I mentioned having the testing as a means to guide any future treatment pathway. He explained to me that if I wished to go down that route I would have to self fund and in the end I might actually be disappointed as it may very well be an interesting report pointing to my having a particular gene and advising certain meds may be more beneficial etc...but he went on to say that if the medication specified isn't available within nhs approval or funding then I would be left frustrated knowing about a medication that I can not access. He did say that if you live in America and your insurance covers it then oncologist have more free reign but unfortunately we do not here in the UK, he said he finds this frustrating too, I could tell by his tone that he meant this.

I just wanted your thoughts really on this as I'm sure I have read some of you in UK have had the genomic testing for this particular issue, on the NHS and if so did it open more doors to targeted meds specific to your gene that was discovered?

Many thanks.

[Barbteeth]

Hi there

I’ve just had it done...had to self fund though!!... probably a waste of money in my case...someone is ringing me tomorrow re results

Felt better for doing it though

Barb xx

[mariootsi in reply to Barbteeth]

Good for you Barb. I hope your results will guide your treatment going forward.

[Hidden]

Hi Caroline,

I had genomic testing done in January. It showed that I have the PIK3CA mutation, which piqray (alpelisib) targets. It was all done for free on the NHS. When I had it done I assumed it was widely available on the NHS, but I have since discovered that this is not always the case. Whatever the case may be for you, I would recommend you have it done. You may learn more about future treatment options, or you may not. I felt it was worth taking that risk.

Sophie

[WordNerdSharron]

Caroline, my new oncologist ordered genomic testing to see if I have the PIK3CA mutation (for treatment later down the road). I believe my insurance is paying 80% of it, with the remaining 20% out of pocket. However, I've already met my out of pocket max for the year, so I may not have to pay anything. Looking forward to seeing what does or does not turn up. Good luck to the rest of you with the testing!