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Recently Diagnosed
I am a 41 year old male and I was recently diagnosed with stage II invasive bladder cancer. I am starting round 4 of chemo this week. After round 4 I have to have a radical cystectomy, and I am terrified. I went for a 2nd opinion to the University of Kansas medical center and received the same diagnosis.
Now it is time to choose which urinary diversion surgery I want to have. Every doctor I spoke to recommends the IC, but I am not sure how I feel about having an Ostomy bag for the rest of my life. I was told that there is a lot of maintenance and complications with the Neo bladder, so I am leaning toward choosing the IC. Is it painful or uncomfortable when using a cathetar to void the Neo bladder?
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6 Replies
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The tumor in my bladder was blocking my left ureter and caused damage to my left kidney, function is down to 30%. The Dr. said he doesn’t recommend a Neobladder since I had partial Renal failure on the left kidney. He says the IC w/ bag is the best way to void urine and protect the kidneys.
Is it uncomfortable or painful when using a cathetar to void the neo bladder? I know I wasn’t a big fan of the feeling when they used the cyctoscope.
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hello
Wow! I thought I was young when I was diagnosed at 53.
But You are where you are, and we just push on.
I am surprised by the lack of Neo discussion by your Dr.
I won’t even try to disagree as I have no direct knowledge. But i have a neo and it works great. Other than an incontinence issue at night, I am happy with the results. The surgery is longer and more complicated so that may be why. But I have had no real problems with the situation.
I wish you the best of luck with whatever choice you make and my sincere hope of a full survivor status for you.Best of luck
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Heck, I can’t take credit. Seems like someone several years ago posted it and I bookmarked. I have kept a pretty sizable library of subjects but, this one is certainly a valuable one for or fellow BC warriors.
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.
Alan, even if I post it, I always give you credit for finding it!! :laugh:
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Jay,
I am sorry you are facing this but, as our friend and fellow poster George says “get that sucker outta there”. And, then go on to a full life. I have bookmarked a very good read on the 3 main diversions in case I face this upon changes with my own bladder: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_DiversionSara Anne, you are most welcome to beat me to any punch posting this site anytime! Also, you do want someone that does many of these a year!
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.
So sorry to hear. I have not had to have bladder removal, but know lots who have. 41 seems young to have only an IC recommended! It is, however, the simplest surgery. There may be a medical reason that this is recommended, or it may be the only one that the surgeon is really comfortable with.
Whichever diversion YOU choose should be done by a surgeon who does MANY
MANY MANY of them and you should ask your surgeon this question. There is also a third choice that many find a good solution, the Indiana pouch.NOW is the time to find a really good place for this surgery to be done, and a surgeon who is willing to work with you on whatever diversion YOU choose. Yes, I understand that a neo can be a bit of a pain to “train” but many people are successful with it and those who aren’t are able to adapt.
This is an important decision, so take your time and do your research,
Wishing you all the best
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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