Newly with bladder cis

I did very well with the radical cystectomy, having a good recovery and not too difficult hospital course, but the cystectomy has not been trouble-free. While I have no regrets about getting rid of my bladder and the years of grief it gave me, the cystectomy has left me completely incontinent. I spent a year dealing with incontinence devices until I finally had surgery to install an Artificial Urethral Sphincter. It was activated after a 6 week recovery and I enjoyed another 6 weeks of a near normal life, and then the AUS eroded through my urethra resulting in swelling and severe pain. I have surgery to remove the device this coming Tuesday and hope my pain will resolve.
Of course I can deal with being incontinent, if I must, just as I have dealt with all the other crap bladder cancer has given me. Even though I ended up with a radical cystectomy before I developed invasive disease, it was a decision I arrived at rationally after consultation with several specialists, and after several recurrences of high grade cancer in a short time. And in the process of having the cystectomy, they found CIS in the ureter which I would never have known about. All things considered, even with all the pain I endured with the urethral stricture, the BCG, and other complications, and even though I am happy to be rid of my bladder now, I do not regret keeping my bladder for 12 years after the initial diagnosis.
Since I don't have a crystal ball and cannot predict what course your husband's cancer might run, I can't tell you what your best course of action is. At the least, my story should demonstrate that with appropriate follow up you have time to decide about cystectomy, to get more than one opinion, and to find the best place for treatment.
I am a New Yorker, so can't advise regarding treatment in KS, but hopefully someone on this board can help with that.

Thanks Sir for taking your time to explain. I'm so happy to learn that you are cancer free now. May I ask you ...looking back 10 years from now would you do BCG treatment or would you do cystectomy instead? Since our kids are too young, my husband prefers cystectomy over BCG and not worried about this for the next 20 years. Do you know any good Cancer hospital and good urologist who specialize in Bladder cancer in Kansas or near Kansas?

TURB is transurethral biopsy. The TURB is done through the cystoscope. It is possible for the urologist to remove all the cancer at the time of the TURB. A big problem with CIS is that you can't always see it all. BCG has an excellent track record for treating CIS. As with all bladder cancer, follow up to check for recurrence is crucial. I had CIS as well as papillary rumors 12/2000. I did not have any recurrences for 10 years, but then I had multiple recurrences and finally had a cystectomy.

Good morning everyone! I'm so glad to find your website. Thank you!

Fhern01, I'm so sorry with your bad new, I hope you don't mind I join your thread. Our situation is exactly like yours. My husband is 50 years old and he just dx with CIS 4 days ago. We also have 2 small sons (age 5 and 11). We saw urologist and he already scheduled for BCG treatment. However, looking at the research, there is only 70% survival rate with this treatment. My husband is more than happy to do cystectomy at this time. We live in Kansas and we don't know anything about the urologist that is specialized in bladder CA or any hospital that do the "high volume" of cystectomy ....It has been very hard for us in the last 4 days...confused, shock .... He already lost almost 10 lbs due to stress.

By the way, would you please explain what is TURB? My husband had cystoscopy with biopsy 1 week ago and the urologist decided to to BCG. According to what i read, should urologist do cystoscopy and remove the cancer cell first then do BCG treatment? Is it because my husband doesn't has tumor???