May 27 2021

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.”
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2026 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007