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T2G3 Female, Indiana Pouch VS. Neobladder I have to decide

12 years 3 months ago #9305 by mznoregrets
Hi Wendy and everyone,

Just wanted to state that I am a female who had DaVinci RC and neobladder done at Mayo's Minnesota on 3/13/07 by Dr. Micheal Blute. I was told I am among the very first to be done - possibly the first sucessful one. Bless you, Holly

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12 years 3 months ago #9304 by Patricia
Wendy....Roger Barton who's storyboard is on this site had his neo-bladder done laproscopically by Dr. Gill....and Holly had her neo-bladder done by DaVinci. I imagine its in the skill of the surgeon and probably not many are doing it this way.

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12 years 4 months ago #9291 by Mike
The Univ of Penn is where I had my surgery done. Up there bladder surgery is hands on and they do offer robotic surgery for the prostrate. I had an excellent surgeon Dr. Malkowicz and I told him prior to the surgery the order of my diversions. The Neo, then the Indiana Pouch followed by the Ileal Conduit Bag.

Although everything turned out great when he did my surgery and this is why I tell you to pick the order of the diversions you want. I wanted the Neo but Dr. Malkowicz saw some cells around the uretha he said he did not like the looks of at that time so he opted not to do the Neo. So I now have the Indiana Pouch and actually I am very pleased with it easy to use and no leakage. Sure I was a little disappointed when I found out he could not do the Neo, this is why I can't stress enough that you choose a good surgeon and one you have faith in this is a perfect example. He also chose for me to do the adjuvant chemo then the surgery. So today I sit here I am alive and I am cancer free as of now and I owe this to Dr. Malkowicz and me to lol because I fought as hard as I could. Joe ;)

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12 years 4 months ago #9282 by wendy
Pat...if they are doing a laparoscopic or robotic Da Vinci cystectomy they are not able to do neobladders that way yet, it's either the Indiana pouch or the ileal conduit. At least as far as I've been able to discern from various articles on the subject. So...women who get laparoscopic surgery do not have the neobladder option yet.

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12 years 4 months ago #9275 by Patricia
Dan...i would have loved to have had a neo-bladder but at the time and this was almost 5 yrs ago the stats were not that good...a neo in a woman was only working successfully in about 33% of the cases...that still didn't daunt me..i still wanted one...UNTIL i had to wear a catheter for 3 days after a TURB...i absolutely could not stand it...I was so sensitive to it I knew i had to look at the Indiana a lot closer and then i got to thinking about being able to "see" where i was cathing or being out and in a less than clean bathroom and trying to cath. Thus the Indiana became my choice and with my stoma in my naval its easy access and there's no feeling at the site and i don't mind it at all. And i can sneeze or cough and NO problem!!
I think there are some excellent surgeons out there that are most capable of doing the neo on a woman..but i do think they have to be sought out. Most of these surgeons are doing neo's on men. Holly had a great surgeon at Mayo. I hope other women with successful neo-bladders do respond. It would be great to compile a list of doctors who perform this procedure on women. Pat

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12 years 4 months ago #9265 by dmartin12358
I'm glad you're in that clinical trial, Sutent sounds promising.

My two cents worth is that if either of those urinary diversions work as advertised, then it really doesn't matter as an active lifestyle can be had with either an Indiana Pouch or a neobladder.

Though, Indiana pouches might be better suited for older patients or those with physical limitations.

Here's something that I would consider (if I was a woman). Because more women than men with neobladders end up hypercontinent (which means that a catheter must be used to remove urine from the neobladder), I wonder what women on this website think who:

1) have neobladders, and
2) have become hypercontinent

If they could turn back the clock and had the option, would they change their diversion to something other than a neobladder?

My guess is no, but just a thought.

I don't have the statistics handy, but VERY rough approximations of those who end up hypercontinent are maybe 10% of men and maybe 30% of women. Keep in mind that having to catherize is no big deal (and is easier for a woman than a man due to obvious anatomic reasons).

I am not hypercontinent and I'm very happy with my neobladder (it's nearly like peeing normally!). Though, if I was, as a guy, I 'think' I might (not sure here) prefer to have an Indiana Pouch. Why? Because inserting a catheter into a stoma (which is the opening through the skin where urine is removed) SEEMS more easier and faster than than inserting a catheter through a urethra.

There is no PERFECT solution, stomas and neobladders both have their pros and cons.

This is just a small thought, nothing to lose any sleep over - removing your cancerous bladder is key.

So maybe some women will respond here???

Dx 7/04, CIS + T1G3, Age 50
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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