Hi Annie

Alex and I had exactly the same battle with our oncologists and they gave the same excuse for not doing it as yours did. I ended up emailing the most senior one, making the following points
a) agree that HPV status makes no difference to treatment today
b) however, that is likely to be because we still don't know exactly what makes HPV different and respond better to treatment
c) who knows, in the future treatment of an HPV positive cancer may well be different to other cancers and I would be devastated if, in the event of a recurrence, I couldn't make the correct decision because Alex had never been tested (or in your case, not given the information about which type of HPV it was)
d) Alex and I have decided that we would definitely like this information for the future and would be grateful if Dr T could arrange this for us (gave him no choice)

They tested the original biopsy sample so Alex didn't even have to do anything.

A week later we were found to be HPV +ve and whilst it didn't change our treatment, it made Dr T start paying attention when Alex had a dramatic response - first to chemotherapy and then to chemoradiation!

Our cancer co-ordinator bailed me up during one of Alex's treatment sessions a few weeks later to ask me to share what I knew about HPV and oral cancer as Dr T had asked for testing on another 6 patients with similar diagnosis.

I thought that was a pretty big win and I remind Alex of this incident when he momentarily forgets my goddess status .

Karen
PS we did not get tested for the actual HPV virus as such but were tested for a marker of HPV type 16 which according to my reading, is a pretty good surrogate (on shaky ground here so unable to explain any better).