Hi all. We need some advise re NHS and cancer treatment. Mum was diagnosed with cancer of bladder and spine on June 10th. Since then mum has had several PET scans, MRI’s etc. no one can give us a prognosis for her, we keep being told we are waiting on MDT every week but no further information. Mum has drastically deteriorated and is now bed bound yet we still have no information. We received another appointment for an MRI in Stanmore next week and MHS ambulance can’t take her as it’s “too early” so Dad in his desperation for answers has paid £700 for private ambulance. As a family we are struggling and mum just don’t know what she is facing. Is this normal from NHS? any guidance or words of wisdom appreciated.
Hi Wkelley79 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like your mum has been on a long journey of tests, etc and it's natural that you'd want to know if this is normal.
As the online community is divided into different support forums, I'm going to recommend that you join the bladder cancer forum where you'll connect directly with others who have had a bladder cancer diagnosis. You will then be able to ask the members there what is normal in terms of tests and expected time to find out a treatment plan.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
I hope that you don't have too much longer to get answers and a plan from her consultant.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
It must be a very difficult situation for you all if the tests haven't been able to establish which is the primary cancer.
I don't know if the wait time you've experienced is normal for the types of cancer that your mum has, but this is a link to the Cancer Research UK site which sets out what the current guidelines are.
You could speak to PALS (Patient Advice and Liaison Service) at the hospital your mum is under and they should be able to help resolve any problems you have with getting the results of tests and finding out when your mum's treatment plan might start.
If you wanted to join the bone cancer forum as well, just click here.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
