I was told last week at my appointment that a pet scan was required to look at the liver due to irregularities showing up on ct scan, I was then advised if I haven’t heard by yesterday to give CNS a call and she would push to get the appointment.
So called CNS yesterday at 9 in the morning to say I had not heard anything even said maybe due to the bad weather it maybe sat at the postal depot, at 1.30 CNS got back to me and was quite confused as to what she told me.
Basically the form completed for the scan was an old form and basically illegal, therefore had not been auctioned, she was very apologetic said the correct form has now been completed and should get scan within a couple of weeks, also she didn’t think I would have been seen this week as the machine has been down a couple of days.
I really do understand waiting is part of having this beast, however I will also have to Wait even after pet scan as it then has to be reviewed at MTD meeting to agree treatment plan. I do know that our medical teams do a fantastic job under extreme pressure, but how can a admin error like this happen.
Ellsey xx
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ellseybellsey
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This extra wait must be so frustrating for you. Consider approaching PALS as it would appear there is some learning to be gained here. That an old form was completed is one thing but it would appear no-one took any action regarding this until your phone call. Not good enough.
When I was waiting for my bladder scan I was put off for four weeks. In the end they did an u/s which showed the tumour but still wanted me to have the scan. Meantime the consultant radiologist had stopped the scan being booked as Id also been referred for an MRI
Six weeks later ended up with a CT which didn’t actually answer anything. Too many fingers in the pie trying to save money
I’d speak to your consultant secretary as they can pick up the phone and get action immediately
This sort of error is very frustrating,& sometimes you wonder what an earth is going on. Hopefully you will not have to wait to much longer & for an appointment. I wish you well with the scan.xx
Well done you for chasing this and shame it is a bit of a dog’s breakfast proces on this occasion. I agree about going to PALS if you have the energy etc as the person needs to be told to fill in the right form so nobody else gets this. I agree about it not being just that but the fact that the wrong form sat there ignored. I know they are busy but this could be avoided so they need to find out about this. I’m so sorry you are having the extra stress of longer waiting. I’m not going to say “try not to worry” because that would be stoooopid. I have found easy crime thrillers on tv such as The Coroner on BBC iplayer and Father Brown to be a help here, and have been reading easy going books to pass the acres of time I have when feeling a bit crook.
Take care of your lovely self and I hope you are warm in this weather
Hi Ellsey. I feel so cross on your behalf! The old forms shouldn't even BE there, should've been thrown out. Also how can such an important scanning machine be out of order for a couple of days?? What's happened to the hospital engineers? PALS or a direct feedback if you can.
Yes the medical teams do do a great job, under pressure - but sorting out some of these hassles would help them too! BW, Linda xx 🌷
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CA125 rise but clear PET/CT scan
Nearly made it to 5 years
Scan and Results Update
STILL CLEAR 
