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Newly with bladder cis

5 years 3 months ago #46349 by sara.anne
Many centers for bladder cancer treatment are listed under the Treatment Center Finder accessed from the Home Page of this site. At the top of the page, click on HELP...then on Researched Resources...and you will find a link to a list of treatment centers.

Those closest to you geographically include the University of Kansas,
http://www.kucancercenter.org/cancer-information/specialties-and-treatment/bladder-and-kidney-cancer

Washington University in St. Louis
http://www.siteman.wustl.edu/contentpage.aspx?id=677

and the University of Iowa
http://www.uihealthcare.org/BladderCancer/

Any of these would be a good place to start.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 3 months ago #46347 by wsilberstein
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.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
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5 years 3 months ago #46346 by Alan
I have not had to have a cystectomy but, have been able to keep my bladder. I understand your ooncern especially with young children. From my perspective give BCG a chance unless you are stage 2 (muscle invasive or further). There are many here that have gone this route successfully although I am ready to lose the bladder should that be necessary. While not speaking for Warren, he did go 10 years although not without problems (such as a urethral stricture as a complication). Stats are useful in one way and at the same time all of us are different so who knows what is in store?

While most on this board may not have a recommendation on what hospital is best in KS, most will tell you to get a second opinion. This disease is often under staged hence a second TURB is often done. Get to a teaching hospital or one that does a lot of bladder cancer! Too many URO's see mostly prostatic cancer. You want a group that does all bladder or a big part of that. The medical school at Kansas must be in one of the larger cities so I'd start there. Perhaps someone else here will have an idea. I understand some of the travel problems. I have queued MD Anderson in Houston which is 3 hours from my home. It is peace of mind on this "sneaky" cancer comes back and wont hesitate if need be.

Good luck, keep asking questions.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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5 years 3 months ago #46345 by PDL05RN
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?

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5 years 3 months ago #46344 by wsilberstein
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.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
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5 years 3 months ago - 5 years 3 months ago #46343 by PDL05RN
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???

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