KC,
Yes, I remember you were a bit anxious about your diagnosis. Glad you are recovering well. I do agree that having the bladder out would help alieve that worry/stress of progression/mets. With one single T1G3 tumor I guess I can hope its a fluke one time event, where if like in your case if multiple T1G3s are present upon diagnosis, it would seem to indicate that there was a more prevalent change in the bladder lining.
There is also the issue with age, being 35, even if I had a neobladder constructed, I really don't believe those things will last longer than 20-30 years before becoming problematic and requiring a replacement. Now at 54, if your neobladder lasts 30 years, thats probably around as long as you will need it. And of course impotency is something else I would rather not deal with at 35. If I were 55-60 I am sure it wouldn't bother me as much (or so my dad tells me
)
I had a second opinion done at the UW Medical Center out here in Seattle this afternoon, where the chairman of the urology department Dr. Lange confirmed my original urologists statistics/EORTC statistics that I probably had about a 5-year 17% chance of progression and 45% chance of recurrance (after my initial course of BCG treatments) or less. He also indicated that he probably wouldn't perform maintenance in my case, as he did not believe the benefits were worth the trouble, pointing out that most people don't even complete the maintenance schedules, and soemtimes the BCG treatments themselves ruin the bladder.
Dr Lang also agreed with my observations in the 16 year EORTC bladder cancer risk graphs that after 5-10 years the risk graphs appear to flatten out, indicating most people making it to this point are in fact cured (although there will always be a few late recurrances/progressors). He indicated that the first couple years are the most important.
And most importantly, he did confirm that he has long term T1G3 survivors with their bladder intact 20+ years later, some were patients being treated prior to him being a doctor.
So, for the reason we don't appear to have any of these long term G3 survivors on the webcafe boards again must just be the nature of the board.. People diagnosed 7+ years ago (prior to Webcafe) who didn't get a bladder replacement or die, probably found their support network elsewhere, are now "cured" on yearly cystos not impacting their life on a daily basis. Seems weird, but maybe the nature of the board just draws people who need support for their cancer, i.e. people dealing with day-to-day urinary diversion problems, people with mets discussing treatment and newly diagnosed worriers. So, if my theory is correct we probably don't even have very many TaG1 20 year vetrans on the board, although I would expect more (but not that many) people with long-term neobladder diversions.
I guess that gives the perception to some of the newly diagnosed that you either end up with a urinary diversion or mets, when according to my consult with Dr. Lange and the EORTC statistics (among others), its obvious that there is probably a number of long term T1G3 surviors with intact bladders/cured.
Of course another part of me suspects both urologists colluding to feed me a rosy picture get me to stop worrying about dying.