Neobladder woman-help!

cookie
cookie Member Posts: 1
edited March 2014 in Bladder Cancer #1
Hi, this is my first post. I am a 48-year old woman who had a radical cysectomy (removed bladder, various female organs) last February and was given an ileal neobladder, attached to my urethra, so that I can continue to urinate as before. The tumor was a nasty grade 3 but the pathology after the surgery was fantastic so I required no chemo or radiation. I am having problems with hypocontinence (can't empty well) so I have to self-catheterize several times a day (although I am able to void some on my own). My doctor is hopeful this may improve. Are there any women out there who have had a similiar surgery? Thanks!

Comments

  • Unknown
    Unknown
    #2
    Hi and Welcome to the Cancer Survivors Network!
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  • mjmimi36
    mjmimi36 Member Posts: 3
    #3
    Hi Cookie, I am a 66 year old woman who also had a radical cysectomy. I am in the system look me up. As far as emptying well I do a lot of pushing. I measure my urine to make sure that I am emptying. I average 100cc an hour. I am very pleased with my neobladder. I have self-catheterized but I am able to void on my own by bearing down and pushing. I have had my new bladder for almost 2 years. Joy and Peace Mimi
  • ndrane
    ndrane Member Posts: 1
    #4
    Hi, cookie! I tried to send a personal e-mail, but I'm not sure if it went through. I'm a 47-year-old female with neobladder reconstruction also. It's been 13 months and all is well. I had so many problems with my old natural bladder that the neobladder is actually an improvement! If you didn't get my e-mail, please contact me at ndrane@aol.com if you'd like to chat and trade war stories.
  • ruthielee
    ruthielee Member Posts: 1
    #5
    Hi Cookie! I'm so glad I found you. I too had a radical cysectomy, hysterectomy and removal of one kidney. My tumor was a grade 4. I did not need chemo or radiation either. My problem is opposite of yours, I leak! I've had more surgery to help the problem. But it really hasn't worked. I'm wondering how you are coping and your family is too. I was 48 when diagnosed and operated on 3 months later. I will be 50 next week! Exactly 1 year after I got the last cathedar out. My family and I are having a hard time.
  • ciaduffy
    ciaduffy Member Posts: 1
    #6
    Hi ... this is my first post. I'm a 54 year old woman who will be having a radical cysectomy at the Mayo Clinic next Tuesday. My cancer was carcinoma insitu and was grade 4. I'm nervous as can be and have found the various postings from those of you who have already had the surgery to be inspiring. Are there any questions that i should know to ask my surgeon prior to surgery on Tuesday? Any 'surprises' that i might be unaware of? any information is very welcome. Thanks very much!
    Cindy
  • trenella02
    trenella02 Member Posts: 1
    #7
    mjmimi36 said:

    Hi Cookie, I am a 66 year old woman who also had a radical cysectomy. I am in the system look me up. As far as emptying well I do a lot of pushing. I measure my urine to make sure that I am emptying. I average 100cc an hour. I am very pleased with my neobladder. I have self-catheterized but I am able to void on my own by bearing down and pushing. I have had my new bladder for almost 2 years. Joy and Peace Mimi

    my surgery is coming up in the next couple of weeks
    Hi, after speaking with the surgeons nurse yesterday, I have second thoughts about the Neobldder! Seems like a lot of work. I am a 70 yrs. old, I try to keep myself active, & I was told about the different things that I would incur. I really hate catheters! I know the Neo would be the best thing for me & I was looking forward to having it. I just don't know if I want to be put through all the stuff you girls are experiencing. My second choice would be having to Cath an opening every 4 hours. Then I was told that the opening in your stomach, sometimes leaks & my close up a little. Seems like having the bag is the least to maintain. PLEASE LADIES TELL ME HOW YOU ARE COPING WITH THE NEOBLDDER??
    I just don't know which way to go!!! Thank you in advance.

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