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 

Thank you.

The problem is that they have no idea where the primary is (all secondaries so far have been removed and they are adamant that it is highly likely to be in the head/neck area due to P16+) and if I do nothing now...I mean no radio/chemo...by the time there is a check up in say 3 months, it could be elsewhere (in my body) and then, apparently, untreatable. "Only palliative care".

Of course it could (could it?) also spread, even with treatment now?

I am not clear as to whether if it appears in head/neck region it would be treatable wheres if it 'travels' outside it is not? I have asked the oncology team this.

Thanks again.

I find it highly unlikely that something so small that it isn't detectable on a pet scan could seed and set itself up in another part of the body in three months and be non treatable. 
I was told when they couldn't find my primary its probably tiny if there at all, and the lymph node was high up, first in the chain as it progressing in lymph nodes. I asked can it spread from the lymph nodes to other places if I do nothing or have it biopsied? They said from a biopsy very rarely, and ... they hesitated in time doing nothing even if the primary is indolent and the secondary lymph just ignored eventually it will spread and grow that's what cancer does. But i think they were thinking the primary would more likely get larger before it actually spread. 
I know it can spread to the lung and stomach if it does spread. Neither of which I would consider is not treatable, fair enough not as successful outcome as HPV head and neck cancers but definitely still treatable. 
I get the distinct impression they are basically trying to frighten you into treatment but suggesting if you dont do something about it now you lose your chance.? 
They did that to me when they offered TORS tongue cuff and dissection of the neck. When I said no thanks the consultant bascially wheeled himself away from me on his chair folded his arms and said 'ok we'll just send you back to where you came from then !' ( I'd been referred from a smaller hospital) 
I dont react well to blackmail so I left and reported him. 
Its your body, your cancer, your treatment, ask for other opinions if you have doubts. 
Like I told the Mac Millan nurse who rung me still trying to persuade me to have the TORS etc if i go ahead with this, I feel like I will be his victim not the victim of the cancer because its not my choice. 
I know everyone says trust your team blar blar blar but do you know what, they've know you for like 10 mins .... you've lived in your body for 70 yrs, and at the end of the day you're you and special and individual not a number or statistic or another cured or not not cured nhs number  x 

By way of an update.

I considered getting a second opinion, but that would just be another opinion. The fact that 2 opinions coincide (if they did) proves very little and if they didn’t coincide then that creates more indecision for me.

So I have trust in all the people I have come across in surgery and oncology and am pressing on with radio and chemo therapy ASAP. I have had my ‘mask’ made, so all is geared up for an eventful run up to Christmas.

I'm glad you have been able to make a decision you feel is right for you and are moving forward. 
Good luck with your treatment over the next few weeks, everyone here will always want to help and support you so if you have any questions or need some encouragement everyone is here for you. 
We all know this is very much at the end of the day only something you do alone, but knowing everyone is waiting in the wings really helps. 
I am due to start radiotherapy 1st Dec so we will both be missing out on xmas dinner most likely... but there will always be next year due to sacrificing this one. Take care x

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Mandi