Rosie,
All I am saying is that personally looking at the statistics (EORTC in particular), about 75-85% of your 5 year risk for recurrance and 50% of your 5 year risk of progression is in the first two years.. Rosie - your first recurrences happened within this 2 year time frame as well.
Those who make it through the first 2 years without progression or recurrance, statistically have much better odds of never having a recurrance or progressing... Statistically your risk never actually drops to zero, but for each successive year that you have no tumor recurrence or progression, your overall long term risk (statistically) drops more and more. I think Dr. Schoenberg in his book "The Guide to Living with Bladder Cancer", stated that at 5 years without a recurrance or progression that you could call yourself a "Survivor" and were probably cured.
"Q. Can bladder cancer survivors ever count themselves in the "cured" column?
A. As with most cancers, the longer one goes without a recurrence the better. The majority of patients with bladder cancer are initially diagnosed with a non-muscle invasive cancer that can be managed initially with tumor resection via cystoscopy with or without intravesical therapy. These patients however, are at high risk for developing another tumor. The majority of recurrences occur within the first two years. The status of the bladder at the first three-month follow-up cystoscopy is a very important contributing factor to remaining disease free. Recurrent tumors do occur after the critical two year period, though less frequently, and patients should continue to be followed at least annually."
www.bcan.org/index.php?name=Emails&op=view&id=8
I did talk to a gal who had superficial bladder cancer last summer who had gone 20+ years without a recurrance.. it was a one time event for her. I think many of the long term recurrance/progression free survivors have put their cancer scare in the back of their minds and have gotten on with life and are not pouring over statistics and websites. This website has probably only been significantly trafficked in the last 5 years or so? Incidence of bladder cancer increases with age. People over the age of 70 develop the disease 2 to 3 times more often than those aged 55–69 and 15 to 20 times more often than those aged 30–54. So most long term survivors who had bladder cancer 20 years ago are probably dying of something else in a nursing home or have already been planted, probably not too many 90+ year olds posting on BLC Webcafe.
OK, I'm just rambling now - I'll stop