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I have an update.(Bladder Sparing vs RC)

9 years 8 months ago #24686 by Patricia
Webs......well there is one 25 yr old study out there that says the Indiana is doing just fine.
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ProduktNr=224083&Ausgabe=227678&ArtikelNr=49849
The Kock pouch is just another version of the Indiana...only the Indiana is better as it has a reflux valve......
I think surgeons just make up stuff !!
Pat

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9 years 8 months ago #24685 by mmc
Al,

Chances are, as I'm sure all the docs you've seen have told you, is that the CIS will come back.

Got mine out and I am one happy customer.

Let us know when you go for surgery and how it goes. This is the place to ask any questions you may have as a lot of us have had RCs and cystoprostectomies.

They thought they got all mine in the biopsy done a few weeks prior to the surgery but there was CIS all over the place when they did the pathology.

I didn't need any convincing as my CIS was a recurrence from 2 years prior and I had decided ahead of time that if it came back, I was going for the option that had the best chance of getting rid of the cancer for good.

My assumption would be that you're getting surgery pretty soon, so best of luck!

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...

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9 years 8 months ago #24684 by scottstar68
I'm a 52M and have CIS/Tis (2/20/09) that's about 70% for sure not to have spread to the muscle layer. They based this on one TURBT, two CTScans, and path slides. The only way to tell for sure is to test the bladder after removal. All the dr's I've seen so far recommend removing the bladder, it's my best chance at a normal life expectancy. That's a urologist, two oncologists, and two surgeons - from 2 hospitals. I'm going with their recommendation - even though there is a small chance (maybe 30%) that I'm throwing away a good bladder.

I'm not trying to influence you - just providing a little more info that may help you make the best possible decision. Good luck.

Al

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9 years 8 months ago #24679 by Webs
For what it's worth Mike and Sonya I have the neo. Knowing what I do now I should have gone with the Indy. I was told the Indy was not a good option for long term I was 38 when i had my RC. They said that the Indy wouldn't last 30 years and the Neo would. My neo does not work as advertised though. I should have been more informed and more adament at the time. My fault I just wanted to get the cancer out and did not do enough research. You are doing plenty of research and will make informed decisions. I am sorry you have had to join the BLC warriors, but am proud of you for educating yourself.

Webs

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9 years 8 months ago #24677 by mmc
Sonya,

Best of luck and let us know as soon as you can how things go.

My choice was cystectomy right off the bat. I'm glad I made that choice. I'm not sure where your doc got the info that bladder sparing was equal to RC because that's not what I find in the research.

Talk to lots of women who have had different urinary diversions if you can. There are pros and cons to each and there are more complications with women due to a shorter urethra than men for neobladder. However, it seems that many women have had great success with it as well. Based on what I've read, if I were a woman, I'd probably have opted for the indiana pouch with attachment to the naval. (But I'm not a woman and I didn't opt for that so take it with a grain of salt). :)

Best of luck to you!
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...

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9 years 9 months ago #24580 by Sonya1
Thank you again to everyone who responded today. I am so very appreciative of your knowledge and support. Thursday I go to UCSF for pre-ops and Friday I have my first visit with a local oncologist. I am hoping he could answer more questions about bladder sparing. Unless there has been a lot of change in protocol over the yeats and he has science-based evidence that someone with CIS is fit for this, I am leaning against it. The CIS is just too big of a red flag for me right now. Since I'm getting the onc consult, I am wiling to discuss it. :) Meanwhile, I keep researching. Each day I feel a litte better about my situation.

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