Im going for my cystectomy on 18 oct this year. In fact I have a preliminary CT scan this very afternoon. Im dealing with it at the moment by thinking what im gaining rather than what im losing! My pathology isn't quite as aggressive as yours but I have been in and out of hospital with this illness for 14 years. Sometimes I feel a bit like Im being pushed down a surgical route. But its hard to separate these feelings from the quite understandable fear and uncertainty. One thing I do know is that, statistically, this surgery gives me the absoloute best chance of still being here in 30 or 40 years time. Im 44. And that is the cold hard fact on which I eventually based my decision. I feel totally happy with it now and just want to get on with the business of dealing with it.
As far as choosing the right diversion, Im still messing around! The frontrunners are the neobladder or the internal catheterisable pouchy thing. My understanding is that the neobladder requires more of a learning period but, if the surgery is good, pays off with minimal or no leakage and a relatively normal body image. The other option has better leakage control but you have a permanent opening (stoma) in your abdomen and a potentially greater dependence on supplies like catheters. I think, as we say in england (and maybe there too) its "swings and roundabouts". In other words, each have their strengths and weaknesses.
I went down a conservative route for a year and a half while my surgeon recommended the cut. Im happy I did it but ive arrived back at this point anyway. Im glad ive had the time. However, with the knowledge I have now that the conservative bladder sparing treatment isn't really working, if I went back a year id probably have opted for the surgery sooner. If im to have the surgery I want to absoloutely maximise its effectiveness. Honestly, if I was you now, knowing what I know, Id do the surgery. But Im not you and its unfortunately your decision mate!
I've always thought this illness is kind of primarily a disease of the mind for me. Im having to resoond and make big decisions all the time based solely on something im told. I have no symptoms at all and yet ive elected to have major, life changing surgery based on being told by a doctor that I have a dangerous illness. Its incredibly tough. But, now ive made this big decision and am resigned to it, I do feel a lifting of stress and a keenness to crack on with it and deal with whatever needs to be dealt with. I know its tough ahead but the uncertainty Ive experienced over the last 14 years or so has been incredibly tough too.
Surgeons want to cut. It's what they do! But I believe (and I've been through half a dozen over the years!) that inspite of this, their aim is to give me the most effective treatment they can. I also have met recipients of blladder replacement surgery and that has been tremendously useful (more than anything actually) in helping me understand that there's a good life on the otherside of this surgery. Can your hospital hook you up with some real-life in-the-flesh patients? I hope you find your peace through whatever decision you make.
On Sept 8th 06 last Friday I returned to my urologist for a pre surgery consultation. I told him I was considering the Indiana pouch. He admittedly shot the procedure down saying it was a procedure that was not commonly performed any more. I was told that one of the two surgeons that would be working on me use to do Indiana pouches and now doesn’t do them and the other surgeon won’t do it due to the amount of compilations after surgery. My surgery date is scheduled for Friday the 22nd of this month. ( an RC )
They have already bumped up my surgery once already saying that five weeks out would have been to long and that the bladder needed to be removed as the cancer is aggressive and invasive and has already gone through two layers of the bladder.
I can’t help but feel I am being moved along here a bit to quickly and I am wondering if perhaps I have a cut happy doctor. But at the same time I feel if I delay this there is the possibility of the cancer making it through the bladder walls. Have any of you experienced this feeling about your surgeon or am I being paranoid. Yes I am very nervous about this sugery.