morning All, thought I would just pen a few thoughts, having been "fortunate" enough to have a face to face consultation yesterday for the first time in over 18 months. Brief scene setting, I was diagnosed June 16 with HPV pos R tonsil mass, and completed my treatment (surgery, cetuximab and 35 DXT sessions) in December 16. Previously robust/ invincible GP; I had noted a neck lump in 2011 and was referred by 2WW to max/fac surgeon who diagnosed "branchial cyst". To be fair, he did offer to remove it "if I wanted" but advised follow up CT and USS which happened once and I was discharged! Anyway, clocks cannot be turned backwards can they?
post treatment, and I am now 4 and a bit years on, still have some residual problems with saliva/ taste etc which most of us have some issues, and day to day some discomfort with the fibralgia type neck pain, but life is pretty tolerable and still exists! The reason for the note was that even this long after treatment, I was really pleased/ reassured to actually "see someone". Now I am well aware of the current thinking that F2F FU for HNCs is not "cost effective" and the trend toward interval scan and then patient self referral. The trouble is that with the NHS, accepted patterns of behaviour and access to services generally is so variable! Since I finished treatment, I have never seen an oncologist; my consultant left and has never been replaced. The ENT surgeon who operated on me retired the following year, before I saw him for more that a routine check the scars type appointment. Since then I have been seen by no less than 7 different ENT consultants/ locums/ clinical assistants, with no semblance of continuity. I have had no MacMillan follow up since month 2. issues raised have included being advised that I need vascular follow up and scans to rule out carotid artery thickening/ fibrosis; that has not happened as my DGH now has no vascular surgeon, and GP referral elsewhere just has not been actioned. My local GP commissioning group has actually now contracted all HNC surgery to a University Department 50 miles away, so in theory, my host hospital has no head and neck cancer care.
I suspect that I am only being given the courtesy of any local follow up because of my profession, even though now retired. I realise that, in this, I am very fortunate, and also I have actually now for the first time in my follow up, been consistently seen by the same consultant for a period of time, which is also a bonus. My point having meandered for a while, is that while I understand that F2F may not be effective in medico-economic terms, its value to me is inestimable. I don't linger on my diagnosis or actually worry too much, but I think we would all admit that it never completely "goes away", does it? We (or myself anyway) don't burden spouse or family if we can, knowing how distressing the initial event was for all concerned, in the current circumstances, access to GPs for anything ~"routine" , is difficult/ impossible and we all know they have better things to do, so while it may have been an unnecessary, non cost effective 15 minutes in the ENT outpatients yesterday, it helped me. My professional curiosity to have an intimate view of my own nasal passages, upper airway and vocal chords does not diminish, and the short time having a chat about how I was faring, (and hearing his experience of dealing with CV19 in the hospital), did me good, as did his offer to meet again in 6 months, which as he says, will be a 5 year milestone.
i am interested to hear other thoughts and views, or am I just being selfish and wasting precious resources by hoping that F2F reviews can continue? Best to all! Phil
Hi Phil
I don't have the luxury of your ex profession but I was a vet before I retired and having seen plenty of oral SCCs in cats I knew exactly what I had under my finger.
Two out of my last 4 consults have been over the telephone.I have been assured that any telephone consult can be changed to F2F at my request and I did indeed do that before Christmas so that I could discuss ongoing follow up. I have taken part in the PETNECK2 survey which addresses the way forward and to my mind, provided that I can be seen if I have any concerns I am happy for a F2F once a year.
I was also assured that if I make 5 years I will be signed off clinic but retained on my oncologist's list so that I can circumvent a GP referral and go straight to his secretary should I be worried. That is worth fighting for.
Most of my fellow Zoom survey participants were uncomfortable with not being scoped every time. Maybe it's just my medical knowledge that gives me more confidence in monitoring myself. It's a difficult one.
PS Good to hear you are only months away from that milestone
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Yes. Low risk patients only .....clear at 1 year PET/CT
There are already such protocols in place for other cancers. I think it will be inevitable in a matter of a few years and I suspect patients may not have a choice. Covid catch up for cancer and the rest will take years.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Quite a few are with F2F too. There are plenty of tales of folk getting two three four courses of antibiotics before being referred. My GP couldn't see anything on my tongue but bless him....as a courtesy to a fellow professional I got my cancer pathway referral. Not everybody is so lucky.
Having said that most GPs are aware of the solitary enlarged lymph node as being a real red flag symptom and do get cracking
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
