Welcome to the site. Sorry you had to join. It does help to keep a sense of humor and you find all kinds of variations of humor on this site. It certainly helps me.
Getting that follow up TURB is a common procedure as the first TURB is often understaged and sometimes they miss some the first time around.
I was in that less than 10% group that got CIS only without another regular kind of tumor so I do know what it’s like to be in the low end numbers. Unfortunately, it always seems to work for things like this and not for lottery tickets. I guess I’d actually have to buy some to win though… :)
I certainly agree that this sucks. Hopefully, we can make it a bit less ‘sucky’ though because you will see that you aren’t alone in all of this. There are over 500,000 bladder cancer survivors out there in world (quite a lot fewer of us here on the site). It’s VERY treatable. The sooner it is caught, the better. Hopefully, you will fall into the non-invasive category.
One thing to know. Your test results are yours. You have access to get copies of everything and all you have to do is sign for them.
Some folks have found it helpful to keep a log of different tests, results, procedures, etc. You should also get a second opinion from a bladder cancer specialist at a major bladder cancer hospital if at all possible. Have your slides sent to them so their pathology department can double check them. Since they deal with it on a daily basis, they are better at it. Studies have confirmed this.
Did your urologist tell you the stage and grade from the first TURBT?
Look around the site and learn what you can. Ask anything and everything. We’ve been there and done that and are happy to help you by sharing our knowledge and experience.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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