Urinary diversion - Indiana pouch or studies for NMIBC

lightworks
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5 years 8 months ago #55664 by lightworks

Replied by lightworks on topic Urinary diversion - Indiana pouch or studies for NMIBC

Thank you Cynthia for your insight. Yes, getting the right surgeon. Dr Schuckman, a USC oncologyst, is suggesting an Indiana Pouch for me. I should ask her how many Indiana pouches she's done. A man I spoke with who had a neobladder, had robotic surgery and has very little scaring externally and another person I saw on a video had a Indiana Pouch that was robotic and orthoscopic.
Has anyone had experience with The City of Hope cancer center, they are a NIH designated cancer center. How about other places or doctors that do Indiana Pouches.
I'm looking for the best operation and a well functioning pouch with the a small amount of scarring, as I'm a lap swimmer and kayaker and pretty active.

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Cynthia
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5 years 8 months ago #55646 by Cynthia

Replied by Cynthia on topic Urinary diversion - Indiana pouch or studies for NMIBC

My Indiana is 12 years old and serves me well. I also had CIS and nothing worked I even grew tumors during BCG. CIS if aggressive can get out of hand, I also tried a clinical trial by the time my diversion was done it had spread to my urethra and it had to be removed. As with any urinary diversion the road to success is making sure that the surgeon doing it does a high volume of the diversion they are doing for you. The first surgeon I talked to was local and did only 4 or 5 diversions a year and they were all bags. The one that did mine did 4 to 5 a week and did all three diversions.
I can honestly say that my diversion has not slowed me down or changed my life in any substantial way. Please ask questions if you have them and we will try to answer them.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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lightworks
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5 years 8 months ago #55645 by lightworks

Urinary diversion - Indiana pouch or studies for NMIBC was created by lightworks

Does anyone have experience with an Indiana Pouch?
18 months ago I was diagnosed with Cis T1a. I had two rounds of 6 BCG treatments and still I have CIS.
I just returned from USC where I was in the Instilladrin trial (interferon with the incipient syn 3). I failed that clinical trial having my 1st biopsy still showing CIS.
My Oncologist says I could try another clinical trial or have an RC (soon - 4 to 8 weeks) and that I am a good candidate for an Indiana Pouch.

Does anyone have good outcomes from a clinical trial for NMIBC?
I wondering about Atezolizumab in Treating Patients With Recurrent BCG-Unresponsive NMIBC and/or the Quilt 3.032 studies or anything else for NMIBC that might work to kick CIS.
thank you!

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Urinary diversion - Indiana pouch or studies for NMIBC

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