How to decide if I should get a neobladder?

9 years 8 months ago #46522 by sara.anne
Replied by sara.anne on topic How to decide if I should get a neobladder?
Jeanne....so sorry to hear your "news." None of us really want to be here!

I have not had a cystectomy, so do not have first hand knowledge of the diversions. However, I have done a lot of reading "just in case." It appears to
me that the neobladder is not as likely to be successful in women, due to our anatomy, as it is for men. Most "younger" women seem to prefer the "Indiana", which is the continent pouch you mentioned, where there is a reservoir placed in the abdomen which is accessed via a stoma. There is no outside bag.

Our president, Cynthia, about your age, has had this diversion for a number of years and, if you did not know her secrets, you would never know she had one. I hope she will chime in here!

This is something that you will have to live with for a long time, so much research is indicated.

One thing you want to be sure of is that your urologist has had LOTS of experience with the type of diversion you chose. You might also ask for him/her to arrange for you to talk with other patients who have had this procedure.

Best of luck to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 8 months ago #46516 by Alan
Jeanne, Glad you have found our site but, sorry you have joined us!

One of the best articles I have read is: my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

There are several women that have had diversions on this site so maybe one will chime in. From what I remember reading the "Indiana" pouch is popular but, what do I know being a male! Check further on this site and the womens/bladder cancer forum and post there.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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9 years 8 months ago #46514 by jbredbeck
I was recently diagnosed with bladder cancer, the cystoscopy showed multiple high-grade tumors, and I am scheduled to have my bladder removed in a couple of weeks. This has been an emotional roller coaster for me and now I have to decide what type of bladder I should have.

My best options seem to be a continent pouch with stoma OR a neobladder that is connected to my urethra. I have to decide quickly and have, thus far, not found research that compares the quality of life of these two options.

I am terrified of being incontinent and not certain I can deal with putting a catheter up my urethra. I am being steered towards an orthotopic neobladder because it most approximates a "normal" function. However, I am hearing about incontinence and having to use a catheter.

I am a 52 year old active, married woman with no other health issues. My urethra and bladder neck appear to be in good shape. So far, no evidence has been found that the cancer has spread outside my bladder but they will not know for sure until the pathology report after my cystectomy. Until a month ago, I probably would have never used the word "bladder" in a sentence. :)

Please, can anyone help me find information, share experiences, or point me in the right direction to find research on the success rates of "normal" urination with a neobladder. For example:
- How likely am I to experience incontinence at night?
- Would I always have to travel with incontinence products?
- How often am I likely to have to use a catheter?
- Would it harder to use a catheter on my urethra or on a stoma?

What else should I consider when making this quality-of-life decision for myself?

Thank you so much,
Jeanne

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