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neobladder pros/cons....please help

3 years 8 months ago #48581 by Don
I went through the Neo Bladder surgery a little over two weeks ago and am not sorry that I did. I had it performed at the OSU James Cancer Center in Columbus by an incredible doctor, Kamal Pohar.
Is it fun, no, is it work to recover and retrain the bladder,yes. Discuss the procedure vs. an external bag with your doctor and do not be afraid to get a second opinion to ensure that you get the answers you need to make a comfortable decision.

What it will give me is freedom and it will be easier to lead the lifestyle that my family has.

The recovery time is 6-8 weeks and laying low is the name of the game. I learned that the first week, the hard way.

Best of luck on your decision making, and good health to you.

Keep the faith. Cancer can be beaten!

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6 years 2 months ago #43149 by mmc
This is the same question many of us here have asked. I asked the same thing a little of four years ago. I opted for a neobladder and overall I am happy with it even though I had complications.

It is the most like normal. The percentages are in favor of it working for men both day and night. I never did get night time continence but I just wear a condom catheter hooked to a night bag so it is really not a big deal. I sleep soundly through the night.

I was in the hospital for something else and they gave me a Foley catheter and it caused my neobladder to get overstretched. After that, I couldn't empty completely just using my own muscles so I have to use a catheter. Before that it worked pretty well though.

I would pick the same thing even if I knew I was going to have these complications. They aren't a big deal to me. I was freaked out by the idea of having to use a catheter but once the prostate is not there anymore it isn't really a big deal. Doesn't hurt a bit.

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...

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6 years 2 months ago #43142 by motomike
Hi Sandy,
I'm sorry he is having so much trouble with chemo. I had no side effects at all. The neobladder sounds modern & upscale. The adhesive bag sounds like something Johnson & Johnson invented in the 50's for sandwiches but they work real well.

I decided on the bag. My reasoning may not make a whole lot of sense to some but I thought that having fancy fabricated under the skin bladder might require another operation or two. I read threads here for about 2 weeks. I felt that the bag approach provided easy access should anything need repair or … A great part of that thinking came from my 30 years as a heat & air contractor. I would often need far longer to repair a unit that was difficult to get to. I charged more too. The bag has worked pretty well for me. I’m old and forgetful so I date my bags so I know how long it has been on. I change every 6 or 7 days. Leaks are in the past. It took awhile to get used to the adhesive procedures. I was a little intimidated by the stoma. It kind of looks like raw meat- I guess maybe it is! But I’m used to it. It is pretty tough. After a year without an appt., my stoma nurse & I are going to be testing bags with 1 3/8 inch hole or 1 ¼ inch hole to decide which is the best seal (and best comfort.) If he decides on bags, there are quite quite a few of us here who can smooth out the adjustments he may need.

This is an anxious time and it was for me too but it was only a week or so after surgery that my Doc came to me with the news- YOU ARE CANCER FREE! I want to wish him the same outcome. We will be watching for word from you.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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6 years 2 months ago - 6 years 2 months ago #43122 by Alan
Sorry your husband is joining our "club" but, many are beating this disease! MD Anderson is wonderful hospital with re-knowned doctors. They are my back up should I need a diversion. I live in New Braunfels so I am assuming you live in Louisiana or Texas.

I bookmarked a very good article about the different diversions: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

There are a number of good hotels in te area. Marriot runs one right there on campus:
http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/services-and-amenities/rotary-house-international/index.html

Hope this helps. Good luck and keep posting someone else will have extra observations.

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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6 years 2 months ago #43120 by GKLINE
This is always a choice, but usually the Dr. weighs in with his slant.
Obviously there are pro and con to each procedure. Age and Physical fitness weigh in on each choice. I was told that a age 53, I was on the bubble age-wise for the neobladder, but my health was good, so I qualified.

I am sure the time on the operating table for a neobladder (in excess of 6 hours, to 10 hours) as they have to "manufacture" a bladder from your small intestine, is a consideration. Other diversions require less time for the Dr. to perform.

I can only speak for myself.... a neobladder man. The surgery was BIG TIME, and the recovery was kind of slow and frustrating at times. I basically had to train my body to the new organ. Most neobladder people have a lot of incontinence early on and you have to have a sense of humor during the time of training. After 7 months, I was able to control my daytime incontinence and feel confident. Some have quicker results and others have longer periods of recovery.

I am 4 years out of surgery and I am still having some night time leakage. But I live with this........ happily
I do everything I used to do. Yes, even the ability to have sex has returned because of nerve sparing surgery. But that took a long time and I thought it would never return.... but it did!

There are other diversions out there and someone on this site has had it. I am sure they will weigh in on their experience.

It just surprises me that the good Dr. at MD Anderson did not do more than give you a "coin flip" of a choice. The 2 diversions are so different in their impact on your life. If I was YOU, I would go in and discuss the procedures and make an informed decision based on your husband's lifestyle and physical ability.

Please stay tuned to this thread as I am sure others will weigh in quickly.


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]

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6 years 2 months ago #43117 by Sandy Andrews
My husband has to have his bladder removed in a couple of weeks. He has bladder cancer. He has been through 3 treatments of Chemo..boy was this BAD. We made it through that. Now we have to make a decision on whether to have the bag or the neobladder. Can someone who has had this or knows about it, give me some pros and cons? the Doctor is wanting to do the bag, we believe it is because it is a much easier surgery on him and my husband..but he gave US the choice. Please, please tell me the good and the bad about the neobladder. This one seems like life will eventually be much more normal in the long run, even though it takes longer to recover. There are so many questions I have that I did not even think of sitting in the doctors office, and they are impossible to contact without an appointment, which he has no appointment available that are before this surgery..this is a very good, highly sought after doctor at MD Anderson Cancer Center in Houston Texas..thanks

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