cf944,
So sorry to hear about your situation. I think you've found the right place though.
First, get a second opinion on your treatment plan from a top cancer institute. Like you said, east coast certainly has some top centers.
It's nothing against your doctor, and my urologist actually recommended 2nd opinion. You want one from a major center because they are the ones with the most experience with less common situations.
Also, while it is scary as all get out when you first get diagnosed, you will also find a LOT of people on this site who were diagnosed years ago. There are lots of options and some kinds of chemo for bladder cancer are VERY different. For example, they often instill the chemo in the bladder which does not cause all the side effects of in the vein kinds of chemo. It is localized to just in the bladder and not your blood system.
Thousands have had cycstectomies and are doing just great. Getting a cystectomy prevents it from being able to spread to other parts of the body.
I was just at UCCC (University of Colorado Cancer Center) this morning because I have CIS that spread to both kidneys. Was also going to go the MD Anderson (in Houston) but because of Hurrican Ike, they closed tomorrow.
So, in my case, my uroligist recommended getting to a cancer center because he's not dealt with it spreading to both kidneys.
I picked the one closest to where I live to go to first and then I picked MD Anderson because they are on the top of the list in the U.S.
I'm just saying this so you understand why it is important to get second opinions from the best place you can get to (if not the best 2 you can get to).
My first bout with bladder cancer was 2 years ago. They knocked it out and then it came back again just last month. I am planning on getting mine taken care of and being here to give advice to others in five years or so.
A bladder cancer diagnosis is not necessarily a death sentence. Catching it early gives you a chance to get it taken care of quickly. Getting rid of your bladder makes sure it doesn't come back.
Hang in there! Have a nice glass of wine and hot bath. Read all you can here on the site from others. Most importantly, get yourself to the best centers you can as quickly as you can so you can get information, a treatment plan, and reassurance.
You do those things and there is a good chance that you will also be telling your story and helping others years from now.
Best of luck and keep us posted on what you do.