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Surgery tomorrow for neo bladder

8 years 6 months ago #32131 by Patricia
FarRed...here's a link to the blog started a couple of years ago...some pretty interesting comments and good links..many of which are listed on this site.
http://apps.pathology.jhu.edu/blogs/bladder/?p=6
Glad you're doing well.
pat

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8 years 6 months ago - 8 years 6 months ago #32126 by Humpy
Red, Don't let Dr. Mikenstien kid you. He may not have the certificate, but he is our doctor.

Continued improvement to you!

Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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8 years 6 months ago #32125 by mmc
Nope, not a doctor.

Just someone who has been there and done that. I studied a lot when I first got it and then again when it came back.

All the best for a continued recovery!

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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8 years 6 months ago #32123 by FarRed
Thanks, it's going well. I had a bad gastro day yesterday. I hope that was the last gasp of getting the GI tract going. I also saw my PCM for the lower back pain. It's always been a problem with me. In order of worst to best--back, GI, then surgery site. Imagine that--the surgery was the easy part. She ordered xrays and put me on Soma, a muscle relaxer and Tramadol for the pain. I feel normal again.

I don't get my foley out until the 4-week mark, another two weeks! Then the fun starts.

So are you a doctor or simply someone with lots of experience? I understand this site was started by patients rather then a medical association. Quite a valuable service. I went the Johns-Hopkins urology website but couldn't find any forum.

Age: 50
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.
UMC Tucson

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8 years 6 months ago #32106 by mmc
FarRed,

Just wanted to check in with you to see how you are doing.
Hope all continues to go well in your recovery!

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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8 years 6 months ago #31968 by mmc
Glad the surgery went well and that you are doing fine!
Always great news!

My problem with retention was discovered months afterward. It just seemed to be getting harder and harder to urinate. They had me pee in a machine that measures flow and then they did a scan of my bladder to figure out how much was left in my neobladder.

It just got progressively worse so that's when I had to start cathing pretty much every time I go.

My surgeon didn't do a suprapubic tube so that's why I didn't use it.

There are options to consider (much, much later though) with regard to the nerve sparing and if enough was spared. I was pretty freaked out about the idea of the shot for a long time. Eventually (after 8 months) I tried it and it wasn't nearly as much a problem as I thought it would be and it works. Then I was kicking myself for waiting that long.

Recovery time for that varies widely though. Some folks in just a few weeks, some a few months, and some a year or more.
Maybe it's just me, but without the prostate, it doesn't seem to be on my mind every 40 seconds like it used to be.

As for continence, I think it really starts happening around a month to a month and half after getting the catheter out. That can seem like a really long time while you are in that mode but it seemed to get better and better control rather quickly after that. Your mileage may vary.

Do those kegel exercises according to the plan they gave you. From what some folks have posted, doing them too much isn't good either so stick with the schedule. Doing them not enough makes it take longer to get continent.

Mike


Keep posting back with questions and updates.

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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