As I hadn’t had a nasoendoscopic exam for 8 months I asked that my next appointment wasn’t over the phone and was a F2F. I was looking for that reassurance even though I felt well. Dr Banner and I talked about follow up. I was keen to clarify a few things as my mate Hazel had been eased out of the cancer pathway for her checks and I was not happy that the same fate might befall me. (she wasn’t happy with her situation either….in fact she was furious and did something about it)
Bless him. He was keen to assure me that I would remain on his list and he would definitely be the one to “discharge” me at five years. His words, “I don’t just want to see sick people. I want to see that I can make them better, to see them well.” Hardly surprising that. Can you imagine how miserable it must be to see ill people in various stages of radiation decrepitude and not see them thriving? Another thing I learned was that it was his policy to not actually discharge his patients but to simply say he didn’t need to see them again and that if there was anything worrying us that we thought might be cancer we should bypass our GP and go straight to his secretary.
Anyway I digress
The long and short of it is that follow up of head and neck patients is labour intensive, inefficient and unsustainable. Most recurrence is symptomatic and reported by the patient. Nasoendoscopy in particular is invasive time consuming and doesn’t pick much up. Clinicians are looking at changing the way head and neck cancer patients are monitored with a view to making the whole thing more patient led. One protocol being looked at is to have patients undergo a PET/CT at a year and those at low risk (ie no cancer) go on to a patient initiated appointments with guaranteed contact with their clinical nurse specialist and a two week emergency appointment with a clinician if needed.
This is the way patient surveillance is going and is the future
Below is information from Birmingham University exploring how this might be done. Anybody interested in this should have a go and we can shape the future of the folk who walk in our footsteps
The above link is not clickable so please copy/paste email@example.com for further information
Online survey is at http://www.smartsurvey.co.uk/s/PETNECK2
3 thoughts on “The future of follow up”
Hi Hazel. Yes get this PETNECK2 survey out there. It’s an opportunity to have some impact on how this will be formulated…..and we are well placed to have an opinion.
Excellent post as usual, my next one is a phone call and then 3 month later a nurse led clinic with the consultant being on the same floor and if I need to be seen will see me.I have also been given the reassurance that if I felt anything wasn’t right I would be seen by a member of the clinical cancer team within 2 weeks.This is the way forward as like my oncologist has always said we know our bodies they know the science,
Onwards and upwards .,will put similar post in my next update as well.x