Post treatment for hpv tonsil & tounge cancer

PET/CT post-RT is to establish a new baseline profile rather than to search for recurrence

I was told it was to check whether treatment had worked. 
Swansea used to rely solely on post RT MRI but now they have access to PET/CT at Cardiff everybody gets a scan at 16 weeks. 

Interesting. From what I understand it’s pretty hard to do primary diagnosis from a scan as they are so fallible. Mainly used to back up clinical observation when there is something specific to look for. Hence the post RT scam is typically to establish the new ‘normal’ as the landscape will have changed from surgery and/or RT. However I guess some may tell a different story.

Hazel

Thanks for your reply. However, I haven't had any taste buds for a ages and yet the metallic taste is over 10 days running (at least) now and getting stronger each day. 

This metallic taste was the same when I was diagnosed. I didn't get anything with the radiotherapy. So I now fear the worst.

Regards

Dave

Thank you Hilary

Beesuit

I totally agree with you. Most of us can deal with the treatment etc.

It's always the waiting that plays on your mind.

I had a scan of sorts but wasn't told what it was for, or the results.

I did want confirmation of sorts, but haven't had anything explained as to how they check it's been removed or monitored and it doesn't come back.

Regards

Dave

Hi Dave

Don't be too despondent on the taste front. I'm 8 years on and it took the best part of 18 months before I got anywhere near "normal" and chocolate is still only enjoyable in very small amounts and it took about 6 years to get to that stage..

It is horrible and very upsetting and depressing when everything tastes like sh*t especially when you are hungry but it did get better, albeit slowly, for me.

Oh Dave it really sounds as if your team aren’t communicating with you at all. Not getting clear answers is so distressing. 
post treatment I had an MRI at 12weeks( these take half an hour in a clanging noisy tunnel and they put head phones on you) and a PET/CT at 16 weeks. You get injected with radio active glucose, wait an hour then get scanned. The scan is quite quick at ten minutes or so. 
I know there are some different views here on scans and different hospital boards seem to have different approaches but there are NICE guidelines. 
The trouble with PET scans is that although negative predictive values ( no disease on a negative scan ) are nigh on 100 % accurate, positive predictive values can be as low as 50% which is rubbish! 
I would recommend you take somebody with you at your next appointment, sit your consultant down and get some answers. 
I hope you get somewhere as it’s too much to expect an ex cancer patient to cope in the dark. 
good luck.