Hi all
Most of you know that I have been exceptionally luck over the last year since my various surgeries. I did not need radio or chemo although the primary site was unknown. I was put on watchful waiting with regular face to face checks. All through the Covid crisis my hospital has been magnificent with arranging checks and managing any unusual lumps and bumps I've found.
It would be easy for someone to let the checks slide because of Covid fears/pressures, or just the feeling that everything is all OK. Please don't do that - EVER.
I went for a regular check yesterday - the last one was exactly 3 months ago today and totally clear. After what felt like having a camera down my throat for 10 minutes and far deeper than I'd ever had it, my consultant said there is a growth at the back of my tongue where he would expect the primary to pop up...
This just highlights for any new people on here, or those feeling the relief of having just completed treatment, the need for going to those outpatient appointments. From work on cancer in a prior life I know that the drop out rate on follow-ups is around 30% over the 5 year cycle. I cannot sense this growth at all - even now knowing it is there. I suspect that if it had been delayed until I felt it there I would be in serious trouble. So I reiterate keep your follow-ups and fight for them if your hospital is not as diligent as mine.
Anyway, I was straight off to pre-op assessment ready to be called in for a biopsy so we know what we are dealing with. Might need some scans first, but probably not. Hopefully not too long to wait as they normally do ENT on a Wednesday or Friday theatre slot...
Hi Peter and thanks for the post.
Do hope all is OK but if not, at least it sounds like you've caught it early. I'm keeping everything crossed for you.
Linda x
Hi Peter
Thanks for the update. Not what you wanted to hear but I imagine you half expected it at some stage. I remember you posting about trying to not live on a knife edge. My cancer was in the same place and caught earlier than it would have because I am a surgeon and I found it. There aren’t any sensory nerve endings there which is why your consultant is right in saying that usually these lesions are found in an advanced state.
I have just returned from my 2 year check up and was offered a PET/CT at 3 years. Your post has encouraged me to grab that chance.
Keep us in the loop and I hope the treatment plan comes quickly.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks for posting this peter, i am sorry to hear this news, but hopefully you have caught it really early. Crossing absolutely everything. Trev
Interesting post. I don't know if this is a national directive (I suspect so), but I received an email the other day stating that the five year face to face check ups will be stopped as the majority of recurrences are not picked up by them. I was asked to complete a survey about alternatives e.g. an app.
This will only affect new patients when this becomes live. I am in the Nottingham area.
Wendy
Good evening Peter, sorry that they have noticed something but better now than later my friend, it just goes to show how important these check-ups are even though you are feeling well in yourself. Normally with cases like this, you will get seen and treated very quickly due to your prior encounters. Fingers crossed for the biopsy and scans if needed, best wishes, take care.
Chris
Wendy, was this the PETNECK2 survey? I have done this and discussed it with my Oncologist.
The reasoning behind this is that clinical appointments don't very often pick up disease and are time consuming and unsustainable. Most recurrence is diagnosed after patients report symptoms so they are looking at a more patient led system for those deemed at low risk at a year.
I doubt Peter would agree but then his circumstances are exceptional and he would have been classed as high risk and be continued on the clinician led follow up even under a new system.
My consultant assured me he would be the one to sign me off at five years but rather than discharge me the protocol was that although he didn't need to see me if I suspect ted anything I was to bypass the GP and phone his secretary to make an appointment. But this is Wales, not England.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
When I worked the cancer pathways, 3 years ago, there was a programme of work whereby if the clinical team thought you could be trusted then you would go through the 5 years with less frequent face to face checks on the full understanding that if your had ANY concerns you were to raise them immediately. I was put on that type of pathway back last summer. I did raise a couple of concerns and so they called me in for a face to face last October (the issues were false alarms). The October check was early. This January check was the scheduled one I was due.
Clearly if the clinical team don't think that you will look after yourself with checks etc then they will call you in as normal.
I suspect what you are describing is a development from those prototype pathways. I am out of touch with them now as I retired...
Personally I don't have a problem with reducing contact and using virtual meetings if people are happy with it. But if you feel a need for the face to face then fight for one. I am so lucky with my local hospital that there is no need for any fighting to get seen :-)
Hi Wendy too am involved in the PETNECK2 survey that is looking at starting trials. Most reoccurrence s are in the first year. Patients would be seen as now then at end of year 1 a pet ct scsn would be given. Like Dani says its rare that reoccurrence s are picked up by scopes. It’s usually the patient that feels something. The plan would be to report via either an app or paper work There would be a safety net of a guaranteed 2 week appointment if needed. It’s a way off this happening. I too talked it over with my oncologist.He said treatment in last 40 years had changed dramatically but follow ups are still as they were 40 years ago. It’s rare for scope to pick anything up before patient. A contentious issue maybe but research will be done before it’s widespread roll out.
yes Peter would have been kept in with his primary not being found.
hope this makes sense
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
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