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How to decide if I should get a neobladder?
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 -
8 Replies
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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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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
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
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?
Thank you – good description from the Cleveland Clinic. Appears like a choice between body image/function and risk of incontinence.
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
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
Forum Moderator
Jeanne, Glad you have found our site but, sorry you have joined us!
One of the best articles I have read is: http://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.Sign In to reply.