Follow up scans

Hi Emily73 ,

Firstly you’ve done the right thing in chasing things up, it’s really important that you’re aware of your follow up plan now now the study has finished if only from a peace of mind perspective! I would be tempted to give them another call next week to jog them along.I can only share my experience & apologise I can’t give you more concrete advice.

I was part of a clinical trial for my treatment which was over 8 years ago now, I’m sure different studies all have different protocols & I can’t remember if I was followed up as part of the trial for the first 2 or 3 years! I was reviewed via my oncologist throughout the trial who then passed on the data that the trial required. Once my participation in the trial was over I was discharged from oncology into surgical care & continued to see only my colorectal surgeon for the remainder of my 5 years surveillance. I recall my oncologist saying that had I not been in the trial then I wouldn’t have continued to see him for as long as I did. 

Absolutely nothing, sadly including cancer protocols, seem to be running to any kind of realistic timescales in the NHS right now & that’s not a dig at the wonderful staff that work in the NHS, waiting lists are getting longer & even getting tests to get on those waiting lists is a painful wait! I’ve just been advised to self refer back into physio, for the 3rd time in 3 years with GP & other interventions in those 3 years, I can’t even get a telephone assessment until October then there’ll be another wait for a face to face appointment. 

I hope you hear something soon, remember sometimes we have to shout to be heard. 

Nicola 

Thanks for your advice Nicola. I think I will give them a call during the week. Hope you are not waiting too long for your face to face appointment. 

Hello Emily73 

I agree with Nicola - chase them up.  Sometimes the lack of contact has nothing to do with the actual team treating you, the follow-up may have slipped through the net between the instruction and the contacting you.

Depending on the staging at diagnosis, checks can be anything from three to six months for the first couple of years, then sometimes less frequently.  So please get on the phone and don't let it rest until you have an appointment.  It would be a good idea too when you do eventually see them to ask just what the plan for future scans is and the timescale.

The best of luck, and please let us know how you get on.

Irene xx

Thanks Irene, I initially thought it was every 6 months but as they hadn’t contacted me I thought it must be yearly.