Diagnosis

Hi Steady. Sorry to hear that your worst fears have come to pass. If you put immunotherapy into the search at the top there are posts describing how well some people have done so don’t despair. Ask your oncologist about a new trial called Modi. 
I don’t suppose this was missed on the scan you had after treatment. We have only one scan, that’s the problem. 
I presume you weren’t offered RT initially? 
I hope something can be done to keep you well for years. 

thank you DANI

I wasn't offered RT after the tonsil surgery and yes you are right - ongoing scans are not the norm, which is unfortunate as I read in USA ongoing scans are standard procedure during and after treatment

But then thats the private sector!

After being told that the cancer had totally gone it seems it probably never did.

Thanks for the heads up on Modi i will certainly mention when I see the Consultant

Hi Steady Sorry you e found yourself in this position. As Daninsays immunotherapy is having great results And the modi  vaccine trial is in its infancy. Hoping that there is something that can help. 
Hazel x

Hi Steady

Really sorry things went this way for you Scans are a real problem that should definitely be addressed 

I had private treatment in Germany and had three PET CTs as follow ups I had doubts, but my professor sent me several links to research papers They all had one thing in common One PET CT as follow up is inconclusive Three probably too much, but still ok in some cases But two (at least 6 months apart) are the best choice Negative predictive value is very close to 100%

So every time I read about follow up without scans I wonder how is it justified from medical perspective

Good luck with your immunotherapy! 

Riotsupervisor said:

One PET CT as follow up is inconclusive Three probably too much, but still ok in some cases But two (at least 6 months apart) are the best choice Negative predictive value is very close to 100%

Which is why there is talk of having one PET/CT at 1 year. 

I would think the only way to be sure there is no spread to other areas is to do PET/CT within a year or so as I had no symptoms at all of any issues with my lungs   

Without a doubt. I agree. Were you HPV positive? 

not that I am aware of - was not tested? 

not sure what that is?

Hi HPV stands for human papilloma virus. A lot of head  and neck cancers at the moment are driven by the above virus. Mine was. At any one time over  80% of world population has this virus. We don’t know we’ve got it ir had it in a few unlucky ones our bodies don’t get rid of it and 30-40 years later pops up as cancer. The HPV virus is better known for being the one that causes cervical cancer in females. The plus point of being HPV the tumours respond well to treatment. Maybe ask your consultant the majority if head and neck cancers now  are tested for HPV. If you want ti tell us how old are you. I was 61 when diagnosed 
mine was tonsil cancer HPV 16 positive. 
hope this helps. 
Hazel