40% success rate

Hi Mark 

Who told you? Your consultant? 

If it was I think he’s trying to tell you that if they can’t find the primary there is a chance that the treatment won’t find it either. 
I would go back and ask for an explanation so at least you know where you stand 

Stats are retrospective and generalisations. We are all individuals. Stay positive, consider yourself part of the 40% and wait to see what’s said. 
It’s all you can do. We can play around with figures forever. The five year bit is a bit of an illusion. Oncologists use that as a time we are discharged from routine review. But we still remain on their list and we are more at risk of another cancer than if we hadn’t had the first one. But what is the point in spending your remaining years with the spectre of cancer sitting on your shoulder. It’s hard but the longer you survive the easier it gets 
Best wishes 

PS if it was me I’d insist on a PET at a year too

PPS have a look at this essay by Peter Harvey. It explains some of what we feel into recovery. 
workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Hi Mark . As Dani says  we are all individual. Stats are just that statistics.  I know a few whose primary wasn’t found they are now well past the 5 year mark. Often consultants forget we are vulnerable during treatment  and blithely quote statistics.
I’m in the glass half full side I don’t dwell on the what it’s. I am living my life none of us cancer or not none of us can predict the future. One life just live it. Yes ask for a pet ct scan at one year. The article Dani has highlighted is an excellent one. I still read it from time to time. 
Hazel. xx

Hi Mark

I am/was CUP after detecting SCC HPV+ in a lymph node.  Had tonsils and lots of lymph nodes removed in early 2020.  No sign of the cancer in any of that.  Aside from "just" surgery no treatment.  They guessed my immune system had dealt with the tumour and I was given as 70% change of return.  Roll forwards one year and a tiny tumour was found at base of tongue.  Did not show on scans.  6 weeks later when I went in for a partial glossectomy it had gone.  Same assumption.  Roll on to almost exactly 4 years after initial diagnosis and it looks like it has made a reappearance in the same spot.

My decision each time, supported by the MDT, was not to have radiotherapy without and target or sign of the cancer after surgery.  There have been a few other scares along the way.

As to your next 5 years, having lived with similar odds (but, I agree better treatment options) my advice is to ensure you religiously attend each follow-up (both my "real" tumours have been found by my consultant without me really knowing they were there).  These check-ups give you the best change of early detection and treatment.  Also, don't be scared to raise any concerns you have between appointments.  I had one serious concern and they had me in within 24 hours to look and assure me it was nothing!

Your mind will run riot, especially in the near future.  But you will settle down to a life where you are wary of a return and not running scared of one, because you have a good clinical support network.

Finally, and I think we all understand this, live life to the fullest extent possible as we don't know what is around the corner.  Be wary of a return, but don't let it rule (and ruin) your life.

Hopefully time will minimise those long term effects.  I found 18 months was a good yardstick for me.  We're all here for you!