Research Question: Does PETCT-guided, patient-initiated follow-up result in similar overall survival compared to current post-treatment routine surveillance for head and neck cancer (HNC) patients? International guidelines recommend regular routine follow-up, aiming to detect recurrences early and enable successful re-treatment. This regimen is effective at detecting recurrences. However, because detection rates are low in asymptomatic patients attending routine consultations, this routine surveillance regimen is inefficient, resource-intensive and increasingly unsustainable. Patients also report that follow-up schedules are too frequent, and may exacerbate fear of recurrence. In contrast, detection rates increase dramatically when patients initiate earlier review because of developing new symptoms.
Aim and Objectives: With patients and clinicians, develop a patient-centred, evidenced-based and theoretically-informed complex intervention and information and support resource for PETCT-guided, patient-initiated follow-up for HNC.
More info is here https://fundingawards.nihr.ac.uk/award/NIHR200861
I’m so proud to be a tiny small part of this trial and I’ve been involved in Zoom meetings to help draw up an App as part of this resource; an App to enable patients to self monitor and keep in touch with their hospital team. There are lots of other extras like links to support groups and living well tips.
I thought I might sneak in a few snaps of what this might look like on your phone.
I think this is very exciting and might well suit quite a few patients. Much as I like seeing my wonderful Oncologist and Surgeon (though I must admit both have been either a distant voice at the other end of the phone or hidden by an alarming amount of PPE paraphernalia for the last year) I guess seeing them less frequently wouldn’t impact much. My Oncologist has done his job…..I sorely hope my surgeon has….. so I feel my survival is now down to luck.
Ive left this on Twitter …….“Just been in a PetNeck2 Zoom call, So proud to be helping finesse an app for Head and Neck Cancer follow up. Do I want an App replacing my oncologist? Human intelligence or AI? Daddy or Chips? Seriously; done properly it makes sense and I would be happy with it. They have done a brilliant job with it.”
Today my coffee tastes like Christmas in Costa Rica 
Hi Dani, yes of course I will. I will give you my 6 weekly updates as there may be things you can share with others that may just be beginning their own journey with this. to date you have been extremely suppoortive and rational; exactly what I need. Speak soon. Stuart x
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Hi Stuart…How did that second appointment at The Marsden go?
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Hi Dani, Sorry, I was meaning to write earlier but time just slipped. The visit to the Marsden went well, that said, I didn’t have a camera examination, it was just questions to me and a quick feel around my neck. They said that the fact id had the camera six weeks earlier they would not do another one. I am due back at St George’s in 4 weeks when they will do another one. The reason the Marsden are still seeing me (and will only be for a year) is because I’m involved in one of their trials, I thought it was to be extra cautious. I still have pain and worry when the area around my lymph node in my neck feels lump-like, but its soft and I am sure its just the lymphedema but doesn’t stop the sudden feeling of panic. My taste is returning but like you, when I eat stuff it must be accompanied with fluid as its too dry otherwise. How are you doing? When do you next have a check up?? Stuart x
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Hi Stuart. That’s great news.
I’m on three month checks these days. Next one is September with oncology. It’s booked for a phone consult. I am due a Maxfac consult this month but I’ve heard nothing so will phone to see what’s going on.
My last F2F was in January.
All’s good. I hardly think about my cancer these days. Just getting on with life. Stan and I had a nice city break in Bath just recently and it was nice to get back to near normal.
Take care and keep going with the exercises.You’ll be nearly as good as new before you know it
Dani xx
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Oh and for heaven’s sake don’t apologise for not replying. It’s time to get on with your life and forget your cancer. Pop back on your first anniversary and say hi xx
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Befire your first anniversary for heavens sake! It’s always nice to hear from you xx
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Hi Dani, Well I have my Marsden appointment last week; they just basically ask questions, no real examination as such, it was ok. Yesterday I was at St Georges to be scoped, this was the third oncologist I’ve seen there and his bedside manner left a lot to be desired. He seemed to be frustrated with me as I was gagging on this occasion, never happened when the others did it. He took out the scope and sprayed stuff in my mouth and nose, not even explaining what is was, and proceeded to scope again (it was an anasetic of some sort). To be fair he did a thorough (somewhat aggressive) examination and was satisfied there had been no reoccurrence, he said he will see me in 2 months. It is now a year since diagnosis and I still struggle in my mind most days but I am getting better. How are you doing?
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Hi Stuart. Some consultants just don’t do patients do they? They might be the cleverest ever but just can’t communicate. I’m lucky. My consultant’s a gem. He’s speaking at the Swallows virtual conference in November so that will be the first time I’ve seen him without PPE for quite a while 😂😂
You’re looking great on your Facebook posts, by the way ( I can say that because I do know how you feel which isn’t great at times, I di understand) and it’s wonderful news that everything is on track on the scope.
Feeling down and unsure is normal but I do promise it gets better.
I say this a lot but it’s worth saying again that the doctors fix us but cancer messes with our heads, our self esteem and our self confidence. It takes time to cope with it all. The best you can do is be kind to yourself and accept the help and understanding from your family.
Keep busy and get back to the things you always enjoyed.
I’m just back from a short spell in the Forrest of Dean in the camper.
Had some lovely walks and pub grub.
Back home now to consolidate the garden and poly tunnel. We have a large sick Ash coming down on Tuesday so I expect the guys will leave a dreadful mess behind. The log splitter will be busy for a week but at least we will have enough wood for years.
Thanks so much for the update and hold on to the wonderful future you have.
All the best
Dani xx
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Hi Stuart. How lovely to hear from you. I was thinking of you just the other day when my conscience started pricking me to update here. I am getting lazy.
Scanxiety and anxiety about appointments; The bane of us cancer patients.
Your dream was a stress dream. I know all about these. I remember just after I took my finals and got my first job my stress dream was failing my exams. Every time I was stressed that was my dream. Eventually they got rare and eventually disappeared.
They were replaced years later by recurrence dreams.
Doesn’t your brain do funny stuff?
They have all but disappeared like the earlier ones.
It’s a natural fear but the longer you are well the fewer you get.
You just have to ride it.
You’ll be fine
Treat yourself to something exceptional when you’ve got the all clear
Re the proposal.
I have the beta app to test
They need to work on it a little.
It’s not going to be possible without a decent amount of consulting with support staff. Fur a start you have to know what’s normal after treatment. You have to know what’s normal for you and basically you need to be looking for anything NEW that lasts for more than three weeks.
All this will need decent education and patients will have to be super confident they can monitor themselves. Otherwise people will be in touch with their Clinical Nurses every week and the system will be overrun.
It’s going into trials for a few years yet
Try not to worry
Let me know how your appointment goes.
Best wishes
Dani
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Hi Dani, how wonderful you are involved, they are lucky to have you 👍 reading through is very interesting, I have a check up tomorrow with a camera (had one 3 weeks ago at St George’s this next one is at the Marsden) and again the lead up is scary. I had a dream the other night it had returned, and since am convinced it had. It’s still all the same symptoms as before but it really is doing my head in. Looking through this proposal, my only worry is, what would I look out for? As it is I would be flapping! Stuart
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