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Did you get a plan when you left active treatment? A plan that showed all your treatments and what was done, surgeries, type of chemo or immuno therapy, expected follow-up, doctors names and contact info, appointments in the future, common complications (either early or late onset), where to go for help, etc.?
Would such a thing be valuable?
I had to make sure I did the writing down as noone did it for me. The nurses made sure that I knew surgery dates, BCG etc but it has always been up to me to do all the calling for everything. I have always kept a journal of all my stuff to do with BC so I can refer to it. It is hard to remember what was what. This came in handy when I switched uros. I was able to tell him what had been done already. Not everyone understands the importance of that or thinks to ask about followup. When I was at the Vancouver conference in November I was approached by a lady who asked if there was any followup for a TURBT. She had had one about a year before and said that she wasn’t given any instruction as to whether there was going to be any further treatment or checkups. I advised her to make an office appointment with the uro to discuss her situation and follow that up with a cysto to make sure that there wasn’t anything going on. I also told her that she should have been instructed as to what to do and if she didn’t get it straightened out with the current uro to switch docs. So yeah, I’d say that it would be a good idea for docs to give you a written plan of everything for past, present and future. That way people won’t fall through the cracks.