I sent you a few emails with a BUNCH with info and references, but I've been having trouble and my messages to AOL people get bounced back. I asked my husband to email them to you via his job.
SOmething that confuses me is that the newest staging and grading systems for blc divide T1 tumors into either low grade or high grade, and here you are with an intermediate grade. Now...if we could pin it down and get a definite LOW grade T1 diagnosis, and without CIS, you would have a much more easy ride regarding the stress of waiting between follow ups, and the risk would be much lower.
In my messages to you I copied references to a good article along with parts of webcafe, on the topics of second path reports, re-TUR for T1 tumors; staging; risk calculation.
I'm gonna have to work on this AOL problem, it's been going on for weeks now.
In the UK its very dependent on where you are. I'm in the south west. Except for the odd blip, my treatment with the NHS has been really very good; responsive and responsible. I met with my consultant regularly and whenerver requested by me. He was personable but frank. His team have been great. My follow-ups, if anything, were too frequent for me! Now I've had my cystectomy (which went pretty smoothly), if I call up I get a call back usually within the hour from a specialist nurse. But these guys are right. not meeting the consultant? regimen changing with no explanation? I'd be raging! I HAVE to know whats going on at each stage of my treatment. I'll make a nuisance of myself if necessary. My main criticism (from my personal experience) of the NHS is the state of our hospitals...mine is shabby. My sis is a lawyer and she has always encouraged me to WRITE as opposed to call with any complaints or issue. You call and it gets lost. If you write then there's a paper trail and someone MUST respond. I would also encourage hand or registered delivery wherever possible. You'll find it "oils the wheels" somewhat!
I spoke to my actual consultants nurse today and she said she has read the notes and that is ok. He is the senior consultant so I cant really go above him!
I dont know where to go next as my GP will go by what the hospital has said.
I wonder, is there someone above this uro's head that you can complain to? The head of the clinic, hospital or whatever? I would be very tempted to do this if I were in your shoes. Or even complain to the uro, over the head of that ill-informed nurse.
I would get a hold of a couple of good sources which state the guidelines of follow up for stage T1b bladder cancer and shove them in somebody's face! But that's me (from NYC).
I find the attitude of the assistant negligent and arrogant, aside from dead-wrong. And the invisible doctor who supposedly knows what he's doing, well...who knows if he is even aware of your situation and diagnosis? I know that there are terrible waiting times in the UK but this is simply not acceptable when someone has your diagnosis.
I know more than one person who is sitting with a lot of 'what ifs' due to the long waits for follow up in the UK. It's not a good place to be.