Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Results

ChloeD
Posted by

Hi everyone, was just wondering if the Macmillan urological nurse would discuss PET scan results over the phone? 

rily
Posted by

Hi . You can call the helpline on 0808 808 0000, open until 8pm. Hope it helps. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

ChloeD
Posted by

Thanks rily,

we have McMillan nurse who we speak with from the hospital but just waiting on results and was wondering if they do discus results over the phone or bring you in to discuss them with the consultant 

rily
Posted by

Hi Chloe. Sorry,  I misread your post thinking it was the nurses here you meant. I was given my scan results over the phone when I phoned up. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

ChloeD
Posted by

Thanks rily 

the nurse we have been in contact with wouldn’t give us the results, she said they will call us in next week once it’s discussed at there team meeting, 

i keep thinking it’s the worst as she won’t tell us over the phone

Denby
Posted by

Hi Chloe, please try to distract yourselves with pleasant/kind-to-selves/busy activities as much as you can. The thing is that the results on their own are not all of the story you need. Depending what they are, you immediately need to know what if any choices you have next and what where and when those could be. This is what the Multi-Disciplinary Team [MDT] need to discuss with each bringing their particular specialist knowledge to the discussion of your situation. So although waiting feels horrible, at least when they have had their discussion you'll get their considered opinion of best way[s] to handle what you've got.

I'm dealing with our wait by having read all of the stuff on RC [radical cystectomy, taking out your bladder so you can't get any more cancer in it] so I'm prepared knowledge-wise for the most drastic treatment if that's what they say he's got to have. I personally have chosen to do this reading up [all on Macmillan website, no google] only because our particular hospital hasn't been brilliant at giving info-so I hope yours is much better. And if they then give my man the option to carry on with more BCG's or anything else, well that will feel like a big relief by comparison. Meantime, I read it but I don't keep going over it.

All the very best, and don't forget whichever of you is the carer is entilted to a good deal of support, it's worth taking up.

Denby