Dear Rosemary,
Most of us hate statistics, I know I do and seeing my own almost killed me on the spot, 7 yrs ago.
There was a good long term retrospective study from USC in '01. The findings were basically, the sooner the better. The long term surival for post cystectomy by stage was indeed close to 100% for path specimens with the least amount of tumor,
blcwebcafe.org/cystectomy.asp#cystectomystats
When a path specimen is staged a P0, it means the TUR eradicated the cancer pre-op. And that's the highest survival group.
Statistics differ depending where you look. Thus the wide ranges we often see in articles. The above study was all from the same institution. 2006 European cystectomy stats reported a rather large drop in survival if a tumor invades from a T2a to a T2b, underlining the risk of understaging.
First line therapy for T1G3 bladder cancer is a hot topic with experts in disagreement of what is best. Many times it's the doctor's preference, other times it's the patient's. Dan's story and his search for a doctor willing to perform cystectomy for his T1,G3 tumor+CIS was an eye opener to me! and maybe more the exception than the rule.
It really boils down to patient preference. For every person that wishes to try bladder sparing, there is a person who wishes the cancer out. There are stats in favor of both approaches, BCG's safety and effectiveness for T1 tumors and CIS "vs." better survival for earlier cystectomies.
I think before BCG panned out to be so effective cystectomy was the first line treatment for T1 tumors, while these days it's more like "if BCG fails, get it out", along with data saying that progression while on BCG gives a worse long term prognosis. And not every expert agrees on the subject (of course...)and due to the lack of randomized phase III trials, there is room for speculation.
Take care,
Wendy