Decision time?

The only qualified advice will come from your oncology team, that would be my choice, the treatment is harsh and comes with lasting effects but all are manageable...I'm also on apixaban, Atrial Fib, probably from Cisplatin chemo treatment.

Hi PCH. I really don't know what to say, this is an awful situation to be in. The only thing you can do is to ask your team what they think is best for you. There are lots of people on this site who have had second opinions, this is a route you could take. I wish you all the best in whatever you decide. Stick with us, we're here to help if you need us.

Ray. 

Thanks

I would guess they think that therapy is best for me as that what I have agreed to ...but with a few weeks to think about it, inevitably one begins to consider other options and especially as I feel as fit as I did 5 years ago before all this started.

The choice is only yours to make, but have a good read of my profile.  Although I was 10 years younger than you the situation was very similar.  It is unusual, but not rare to be in this situation.  For brevity I decided to go onto "watchful waiting" rather than have treatment until the tumor did turn up.  I don't regret that route one iota and I had 4 really good years and, post CRT treatment am now still enjoying life, but I know I have not wasted my one shot at dealing with a tumour that may not have been there.

If I wait they say that if it moves elsewhere it will be untreatable? "rare" was the word they used.

HI 
 I totally know where you are right now. 
I had a pet scan which only showed the 1 lymph gland that had already been biopsied and p16+. They wanted to do the TORS/neck dissection op on me to look for the primary and I said what if you cant find it if its not showing on a pet scan ? 
They seemed to be just want to play with their new robot tors machine and use me as a guinea pig so I refused. 
I went private and asked to just have my tonsils out as a first step in locating the primary. 
Luckily for me, if you can call it lucky, my private oncologist agreed and also thought it would be in my left tonsil but tiny. 
It was!
I had lost a lot of sleep though over what to do if they didn't find the primary and had come to the decision I wasn't prepared to just be hacked about and radiated and still be no better off or not get it, or it actually wasn't even there anymore. 
It takes guts, and yes you're gambling with your life, but sometimes you have to look at what life you will be giving up with these treatments and do you want that as a pay off. 
I had read about the other gentleman on here who stood his ground and said no and watched and waited it out, and I think it was almost 18 months later finally something showed up on a pet scan... 
For me, I think I would have waited, or asked for just the lymph node to be removed with surgery next, and then said right we'll sit it out then until you know what you're aiming at. 
I sobbed when I got the news they had found cancer in my left tonsil, tiny mm's and totally surrounded by good tissue, it took away this horrible decision you are forced to make now. 
All I can say is go with your gut! You are well now, and you know you definitely won't be well if you have this done, its brutal. its a big choice how you feel now is something you cant let go of just on a hunch and dr's statistics. x 
But you know everyone here will be with you whatever you decide. take care