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Potential cystectomy with Indiana Pouch

3 years 6 months ago #51326 by Plk
Joe,

You are welcome of course. Just a uggestion, think about going to RWJ in New Brunswick for a few reasons. They do this surgery a lot there and all the nurses and staff nderstand it and follow a specific protocol. People in my local hospital were not aware of it and I needed to advise them at times, which was a bit hard. Also, RWJ New Brunswick is the National Cancer Institute designated hospital in the state, and my ater surgical care was outstanding! My cousin the oncologist was pretty adamant at my going to a NCI hospital for surgery through she did say that some interesting clinical trials go on elsewhere. This is just my thoughts after my experience. You want a place that has done lots of these surgeries and knows how to care for you.

Sending you good thoughts for the future.

Paula

PLK in NJ

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3 years 6 months ago #51325 by Jmitchell418
Paula,

Thanks so much for sharing your experience with Dr. Weiss. My urologist is also RWJ affiliated out of their Somerville Medical Center. I will be sure to speak with Dr. Weiss as the strategy develops.

Thank you again,

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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3 years 6 months ago #51323 by Plk
Hi Joe,

My recovery has gone well and I highly recommend my doctor. It is Robert WEiss at the Cancer Institute of NJ at Robert Wood Johnson Hospital in New Brunswick NJ. If he is not taking new patients ( he is planning on moving his practice at some point), consider any of the docs in that group. My cousin is a noted oncologist (not in bladder cancer) and she vetted all those docs for me. the phone number to contact him is 732-235-2465.

I have had a few bumps in the road in recovery, butmy doc and his nurse were always there for me. I am doing well and am back to work and moving on with my life. Doing all the things I used to do. I wish the same for you. Good luck and stay in touch!

Paula

PLK in NJ

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3 years 6 months ago #51310 by Jmitchell418
Hi, PLK,

I hope your recovery has gone well since your last post! You mention that your surgery was done in NJ. Would you mind sharing the doctor and facility information with me? I am faced with RC very soon and wouldn't mind speaking with a doctor that has a lot of experience with the IP surgery. I will find out next week if that type of diversion is suitable for me. I too live in NJ. Thanks in advance and hope you are well!

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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4 years 1 month ago #49738 by Plk
I am now 2 weeks post surgery with a radical cystectomy and an Indiana pouch.still very tired, and having much gas, though bowels are fairly regular. I have 2 out of 4 tubes out, and expect to get one more tube out next week. i also expect to learn to self cath next week. Any suggestions of what I can expect for the rest of my recovery?

plk

PLK in NJ

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4 years 1 month ago #49621 by LillianG
PLK, I'm so glad to read that you are doing well. I'm sure that you are relieved to have the surgery behind you. I hope that you have a smooth and speedy recovery.

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.
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