Keep up with those post treatment checks!

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. 

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.

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 

retired47

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.

Thanks. I will let you all know what the outcomes are

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 :-)

Exactly my feelings and I went into the 5 year watchful waiting on that basis.

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