Going in for neobladder Dec. 16 (Part 2)

To everyone; Have not posted for a couple months. But in bed last night as new years came, I could not help but think how much had changed since this time last year. I could only be thankful and i said as much to my wife. Then today i open my email and see that Wayne has reopened my thread. So it must be time to update everyone. It feels real good to know this thread has been some comfort to Wayne. But i know all the credit must go to Cynthia and all the people that do such great work on this site. people like Mike, Pat, Rudy, Jim, George and all the others that continue to help everyone on almost a daily basis. Thank You!
As for myself, I can tell you at this one year mark i am better then i would have ever guessed i would be! I have once again been
very blessed and maybe a little lucky also. Congrads to Mike and Rudy for reaching their cancer free anniversaries!
Hox; it is good to hear from you again. I only wish you would have had a better outcome. I am very sorry you continue to have
so much trouble. I actually believe it's a good thing that you continue to post and tell about your experience. No one should ever take their outcome with bladder cancer or the surgeries as a given. It's a good thing when everyone knows both the risks and rewards. Hox; i can only wish you the very best and ask you to keep posting.
Wayne; I will continue to follow your progress and wish you the
best.

Glad you have been checking that out! Yes, of course you will be nervous and yes, it will be tough surgery, but it is an investment in your future, worth the investment, and very high ROI (Return On Investment). That's my humble opinion!

Mike

Thanks for your excellent advice about surgeons. I'm lucky to live in the Boston area, and have great insurance. I've been able to get three consultations, at Mass General, Dana Farber Cancer Institute, and UMass Memorial, a large teaching hospital nearby affiliated with the University of Massachusetts. I have an appt. with a surgeon at UMass Monday who I think has done hundreds of neobladders - we'll see how it works out with him. In spite of all the information I can get about surgeons' experience I'm still nervous.

Wayne

WaWaWayne and Hox: Oh yes! Mike is absolutely correct. I interviewed and researched for weeks before I decided upon a surgeon at University Colorado hospital. They do nearly 70% of all BC's in Colorado. That's a lot of operations.

Other surgeons I spoke with did a couple a year and although they claimed to have few problems, I did not feel very comfortable about using them particularly when one of them told me it was a waist of time to do "nerve sparing" procedure when removing the prostate and they would remove only a minimal amount of lymph nodes. I quickly thanked him and RAN out of the office.

So, even if you need to delay your proceedure for short time it is worth getting second even third opinions or travel to one of the best places to have this done. You will appreciate it in the long run.

good luck,
Rudy
OH, and a Happy and "HEALTHY" New Year to all!!!!

Wawawanye,

Hox makes an excellent point. When things go wrong, they can go very, very wrong.

That is why it is critical to have a surgeon who does LOTS of neobladder surgeries every year. At least 50 a year but the higher the number, the better. These are typically found at the top teaching hospitals. Memorial Sloan Kettering, MD Anderson, Johns Hopkins, Cleveland Clinic, Vanderbilt, to name a few.

Do NOT get the surgery with a local uro or somebody you think is a 'nice guy'. Surgical skill and experience are what matter most.

Best of luck to you in your surgery.

Mike

wawawayne. My post is not meant to change your mind or to scare you but I wish someone who had experienced the down side of this surgery had prepared me for things not going so well. My first operation was a disaster. Both my neobladder and bowels leaked and within 3 days I was sliding towards death. There was no choice but to go ahead with a second surgery that ended up requiring two surgeons and 4+ hours of surgery. I spent the next week to 10 days struggling to survive. My total hospital time was5 1/2 weeks followed by weeks of daily IV delivered anti-biotics, 3 months plus on a catheter, endless bowel and urinary tract issues etc. 10 months later and I still have no evening bladder control, the daytime control that was once near perfect is now near zero most days, despite working out it still exhausts me to walk up a flight of stairs or my driveway. But worst of all...prior to my surgery I loved my life... I liked who I was... I had a zest for life... post surgery, my life is not the same... that portion of who I was is gone... it reminds me of how my grandmother reacted to the death of my grandfather, a part of her left with him an she was never the same person again...she laughed, she cried just like before but the light in her eyes had dimmed never to light up again... Now I am assured of a longer life...not sure the trade off was worth it... now you'd have to look really hard to find even a glimmer of that happily driven, full of life look you would have found in my eyes prior to my surgery. I wish you and everyone reading this better luck than I had. Hox