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How to decide if I should get a neobladder?

3 years 1 week ago #50034 by sparks
Hello!

I am where you were a year ago. What did you decide, and are you pleased with your choice?

Anything you can share would be much appreciated!

Shannon

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4 years 5 months ago #46540 by sara.anne
USC is one of the very best places for treatment of bladder cancer!! You are fortunate to be there.

I think that the reason that you are not hearing from women with neobladders is because very few have them, and most of them (at least the ones I know about) have been unsuccessful. IF you are seriously considering this, be sure to ask your surgeon to allow you to talk to other female patients he has treated who have a neobladder so that you can assess the situation for yourself and make an informed decision.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 5 months ago #46537 by jbredbeck
Thank you to all of you who have responded. I have heard from women who do not have a neobladder and from men who do have a neobladder. This is all useful information.

Any of you ladies out there with a neobladder or others who can share their experience?

Any other suggestions on how I can find out how this has worked for other women? I tried searching "neobladder" in the blog but didn't find. Should I be posting this in a different forum?

I have a good Urologist at USC Keck but I have found that people who have gone through medical procedures bring a different perspective then the doctors. :)

Please continue to share with me. Thank you so very much,
Jeanne

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4 years 5 months ago #46531 by jbredbeck
Thank you Cynthia. Glad to know the umbilical stoma is not painful to catheterize.

I'd also like to hear from women who had the neobladder. Are you satisfied with the results? Anything I should keep in mind when I make this decision?
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4 years 5 months ago #46530 by jbredbeck
Thank you - good description from the Cleveland Clinic. Appears like a choice between body image/function and risk of incontinence.

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4 years 5 months ago #46525 by Cynthia
Jeanne, This whole thing is a kick in the teeth and hard to get your mind around we know that well here.

I did not have a choice og the Neo as my Urethra was involved so I have an Indiana pouch. No matter what option you chose there will be a learning curve and we will be here for helpful hints not matter what you do chose. Another good statistic is when interviewed a majority when asked would recommend the diversion they have.

My content diversion consists of a stoma in my naval with an internal bag as Sara Anne said. You have to plan ahead but I just keep a makeup pouch in my purse with my cauterization supply's in it. It does not hurt when you catheterize and it does come in handy when you hike, lol. If you have questions fire away we are here.

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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