Thanks for the "kick in the behind" replies! I have already been told not to keep digging for numbers from Jude, she doesn't think it does any good. But Mike made a good point, the numbers are scaring me to rethink what I want to do. I have wanted to keep my bladder for as long as possible, thinking that if/when another tumor came then I could decide on the RC or not. Now I don't think I want to wait for another tumor before I act. Also I have down loaded the forms for M.D. Anderson and have been looking at the University of Washington up in Seattle, they were #6 on the list for cancer centers. I guess a lot depends on the next pathology report. Thanks again, Warren.
Lots of things go into those statistics and lots of things are left out. Let me know what you like to prove and I can prove it with statistics.
I'm 3+ years after my cancer came back as T2G3. It was two years for it to come back after being CIS T0. I'm still here and my doc just told me after 3 years it is pretty rare to come back after the RC.
Don't forget, the statistics so far on guys named Warren look WAY better. Also, break that down by guys named Warren that are the same age as you. What about guys named Warren who are treated at the top bladder cancer hospital?
One good thing about the stats is they scare enough to take this seriously. You'd be surprised how many people delay and delay and say they aren't going to let the doctor's take their bladder, etc. Those are the ones (more often than not) that are dead and we're not. It's not something to take lightly and aggressive treatment gives the best chances.
Many studies are trying to prove some point or another and you'd likely be surprised if you did the math and got under the covers on some of the surveys.
The question becomes "How do I maximize my chance for survival long term?"
1. Get to the best dang doctor at the best dang hospital you can as fast as you can.
2. Treat the cancer aggressively (it's going to be aggressive with you so it's certainly fair to be aggressive with it and kick it's butt to the curb).
3. Rinse and Repeat.
Before mine was diagnosed as T2, I had already decided that ANY recurrence of high grade was my trigger for removing the bladder. Aggressive!
T1 is a more challenging diagnosis if you ask me. T2 is pretty clear what to do. T1? If it were me, I'd have gone for the RC anyway. Since I was T2 I didn't have to argue with doctors or insurance companies to take the aggressive route.
Good luck on the follow up. We understand looking at the stats. Most of us did the same thing. Many of us also decided "Well that's nice. I'm going to be in the percentage that's still alive in 5, 10, 15, 20 years". I encourage you to take the same approach.
Warren, glad you found us. This site has been a blessing for me and I hope you find it the same. NO, not boo-hoo!!! Your post is what this site is for. We have all been there, and all know we could be there tomorrow. I had the same feeling about the numbers with my first cancer. It took me a while to figure it out. Numbers are for large groups, not individuals. What diff. does it make if you have a 90% chance and you fall into the 10%.
Or you only have a 10% chance and you fall into the lucky 10%.
Someone has to fall in that 10%, why not you. My first cancer, bone cancer, % very poor, second cancer, lung, % worse, third cancer, bladder! I am still here and don't worry about the numbers anymore. You jump in and do everything you can, best Dr's, R/C, chemo, what ever it takes. Keep fighting.
Wishing you the best.
I guess the other subject title could be "boo-hoo me", I have been looking up survival rates for T2,grade 3 tumors and I was bummed out, 50-55% at five years. One UK study pointed out that even after radical cystectomy 50% of the bladder cancer will have metastasis to another part of the body within five years and will be fatal in 18 months on average after showing it's self again. That's pretty scary and is freaking me out a little bit. As I posted before, the first TURBT came back as a grade 3, T1 with no muscle showing at all. They are going in again at the end of the month to try and go deeper and get some muscle with margins.
Maybe it's just me being all sorry for my self but I figure that when that comes back I will be bumped up to T2. Then comes the radical cystectomy and all that comes from that...I can accept that, even if I am not happy with that. But I am finding it hard to accept that even after that there is only a 55% chance of survival at five years.
I am knew to all this and I am sure you have all done the same serches I have done and seen the numbers I am seeing...so what do you think? I know others here have had worse DX and are still going strong...are the numbers off? Or is it that bad? O.K. thanks for any opinions and letting me boo-hoo, I can't talk about this stuff with my kids and I hate to bring my better half down with this stuff.