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  • Women and Bladder Cancer

    Neobladder question

    Posted by Martha Pratt on January 28, 2012 at 11:15 pm

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    Now

    This is my first post. I’ve been reading the posts for a few months and learned a lot but have not yet see my particular issue discussed. I had a neo bladder constructed 10 months ago and still have a constant flow. I wear a pad all day and night – go through about 60 heavy duty pads a week.

    The skin burn is quite painful at times – is there any known topical cure?

    My urologists say that sometimes neo-bladder can take over a year to work and I may never be dry at night. Have others found this to be true? What do any of you know to be possible options in a case like mine?

    I’m willing to wait long enough to give it a chance to work but am not sure what to consider reasonable.

    Thanks.
    M.

    gailb replied 12 years, 6 months ago 5 Members · 4 Replies
  • 4 Replies

  • Gailb

    Member
    March 21, 2012 at 4:24 am

    Martha: I am a woman who wanted a neobladder, but got an Indiana pouch, since my tumor was very large and near the neck of my bladder. I heard a lot about the pros and cons of neobladders and pouches before hearing that I would not have to decide, but the decision would be made for me. Even given all I have learned, I would have tried for the neobladder. My pouch is 7 months old and it still has its very wild days when it just leaks after only 2-3 hours. I’m told that it just takes a while to mature. It sounds like you have really waited for your neobladder to work Don’t give up….find a good doc and take his or her advice. I do believe you can go from a neo to a pouch if you choose to (but those with pouches can’t go to neos). The bottom line is I think you have waited long enough to seek and get another opinion and try for solutions to incontinence. Good luck to you.

    Gail B

  • mmc

    Member
    January 29, 2012 at 2:28 am

    Martha

    Women have many more problems than men with neobladders. I would frankly never recommend one for women and would instead suggest the Indiana pouch until I saw a lot higher success rate with neos. That does not mean that there aren’t a lot of women with neos that work just fine. Statistically though, women have far more problems with hypercontinence and incontinence.

    Constant flow sure sounds like a sphincter/valve issue after this much time. As Cathzerine said, it sounds like time for a second opinion at a major bladder cancer center.

    Sorry you are having such trouble.

    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 system
    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.

  • Loubrook

    Member
    January 29, 2012 at 2:09 am

    hi
    I had a neobladder in Oct,2010.It work perfect for 4 months.Opposite of you,now it does not empty at all,I need to use a catheter 5 times a day.
    But my urologist had told me at the beginning ,that the neo could take a year or more to fonction right,he was talking of incontinence as you have, wich did not happen for me.
    I develop a hernia,I need this to be repair, they told me it might work after.
    Do you empty often during the day?how much do you void during a day?
    Sorry I can’t answer your questions,because my problem is not the same.
    Did they suggest that you use a catheter to empty your bladder?

    Welcome to the group,and if you have issues you would like to discuss ,I am here,

    loubrook

    metastatic urothelial carcinoma,neobladder surgery oct.2010

  • catherineh

    Member
    January 28, 2012 at 11:26 pm

    Hello and welcome Martha… I’m so sorry that you continue to have problems with your neobladder. Since you’ve been reading the forum for a while, you probably have seen that there aren’t a lot of women here that have a neobladder as their diversion which is probably why you haven’t found anyone with similar issues.

    A year seems a long time to achieve daytime continence. Perhaps it is time to consider seeking a second opinion by another urologist/surgeon at another facility (highly rated that does a high volume of cystectomies per year) to see if they concur with that explanation.

    As far as the skin burn, have you tried any of the creams that would be used for diaper rash on babies? Perhaps others here can provide suggestions they may have tried for skin irritations.

    Again, welcome and very happy you decided to make your first post. I hope we see you here more often now!

    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

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