My Ovacome

Tumour Profiling

Hi All. I had an oncologist appointment yesterday, though saw his registrar instead. I had lots of questions that he couldn't answer, and he told me that he hadn't worked with ovarian cancer before, which was reassuring!

Anyway, I asked him if tumour Profiling was available on the NHS (he didn't know) and how I would get it done privately (ditto) . What did interest me though, was that he said that the tumour sample of mine that had been retained would not necessarily show the same strain of cancer cells as a recurrence, due to the fact that cancer cells constantly mutate! Presumably profiling would have to be done routinely at the time of the op. Has anyone had this done?

I thought this information would be of interest, and think that it could be of benefit to the NHS, as using targeted therapies would surely save time and money rather than trying different chemo treatments on a hit and miss basis.

Jenny

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Hi

I had tumour profiling done in March 2017 and had my op in Sep 2015- I assumed that the sample was from that time.......

Juliet

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Mum had her surgery performed in 2010 and a sample taken then which showed low grade serous ovarian. She has had a further biopsy taken in late 2016 as part of testing her eligibility for the LOGS trial. Three pathologists looked at the latest sample with one concurring it is definitely low grade, one not sure and one saying absolutely no, with Mum being refused access to the trial. We were also told that cells mutate over time so queried whether this contributed to the pathologists decision that it isnt low grade and should they have used the initial sample post surgery. It is so disappointing that Mum has been denied access to the trial when absolutely everything points to low grade.

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You are absolutely correct. A most up to date sample would be preferable. However I presume it would be even more costly to do the procedure!

Keep pushing regardless. Although a double edged sword. The upside of positive BRCA mutations would open up access to parp inhibitors. ( though there are consequences for the family )

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