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Surgery tomorrow for neo bladder

9 years 2 months ago #31965 by FarRed
I'm replying to both Mike and Pat.

I got home Thursday. Dr Mike Minh Nguyen described the Thursday 11-hour op (a lot of prep--really 9.5 hours) as text book. They were ready to release me the following Tues, which I felt was too soon--too many questions. I had a 101 fever that night, so they kept me until Thursday. Still, 8 days is far less than the 10-14 estimated. Dr N and G said I am progressing faster than expected, makes me feel like a kid who gets a gold star on his forehead. They must’ve removed my testicles, too, because my eyes water at every bit of good news.

As for experience, Dr N has done five of my exact operation--robotic assisted cystectomy with Studer neobladder. So I have the honor of being his fifth—I’ll wear the badge proudly. I don't recall the details of all his work, but he has an excellent track record. Gretzer has done over 100 neobladders and has never had to reverse one.

The worst pain was not the surgery but my lower back. I already had problems with stiff back muscles, and by Saturday, I was at 8 on the pain scale, going crazy. They were able to control it with drugs. By Sunday I had the NG tube out--it was starting to HURT. I felt somewhat normal for the first time. Soft food on Tuesday, bit little appetite until Friday. I’m waiting for the day In/Out Burger sounds good.

Mike:
I’ll keep your advice about the quarter pounder. They advised 10 pounds, but I can hear those little ureters going plink! plink! as they pop off. My wife is there to smack me when I attempt something stupid. Right now I’m just walking my cul-de-sac.

I guess we all know we’re not brave, just doing what has to be done. Let’s just say you’ve got guts for cathing yourself. When did you first realize there was a problem? Why not reroute thru a super pubic tube?

Yes, that cathing scares me, so was pleasantly surprised to hear from you and others that so many don’t need to—what are the symptoms and cause of having to cath? The only thing I’ve heard that helps is hydrating. I previously drank 1.5 liters/day, but am shooting for 3. Chocolate milk helps.

If there was ever a situation that the day-by-day advice applies to, this surgery is it. I d/n see how I was going to irrigate my two surgery caths, but finished the second half of my first lesson myself. I leave the solution in the sun to keep it slightly warm. It is already routine, but still a bit odd. I irrigate the super pubic cath at least three times a day due to mucus build up, and rinse until it is reasonable clear, about three syringes. The Foley is pretty clogged—I can inject saline, but pull very little, if any, out, so am watching it.

We talked at length about nerve/vascular sparing. Dr G didn’t bat an eye about this, and saw little problem, as though he expected it to go well and if it didn’t completely return “there’s drugs”. Because my prostate was more enlarged than expected, they weren't able to spare as much of the nerve/vascular bundle on one side, but was able to get most. Not sure how long it will take for Woody to wake up. Three years? Thanks for the warning.
What is the general experience for incontinence? I was told a slow learning curve for up to six months, than a sharp increase in control. I guess I’ll be singing “I’m a big boy now” for a while.

My last bit of good news is the path report came back clean—no cancer in the lymph nodes and it had not gotten to the bladder muscle.

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

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9 years 2 months ago #31750 by Patricia
Wow FArRed..i'm sure you're under anesthesia by now..but 2 great docs.....Nguyan does both DaVinci and laparoscopic..and Gretzer trained at Johns Hopkins. I haven't had these guys on my radar yet so i'll be interested in your outcome. Working in tandem like that your surgery will probably be shorter than most. My surgeon also did that.
Nguyan is a very popular name in medicine..there's a zillion of them out there...wonder if they're all related?
Wishing for the best outcome for you.
Pat

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9 years 2 months ago - 9 years 2 months ago #31743 by mmc
FarRed,

If all goes well, hopefully you will not need to cath at all.

However, if you do, it will be a piece of cake! I had pretty bad BPH prior to surgery also so getting scoped or the BCG treatments via a cath were not much fun at all.

Now, I can cath with a 16 French catheter with no discomfort whatsoever. Your prostate will be coming out and I can tell you that is great thing if you've been having problems due to BPH. Do be sure to get nerve sparing or else there will not be an erection again in your future. Even with nerve sparing, it can take up to three years to work properly.

Without the prostate, I could probably do my own cystoscopes without a problem now though. :) The prostatic sphincter can get really tight in a BPU situation. That's what causes the pain. Without it, no big deal.

Again, if all goes well, you won't need to cath at all. Cathing is a once a week or once every few days event for some. Others, never. Me....I have to cath every single time I go, but I am in the unfortunate few.

I can tell you this....be sure you have the best damn surgeon you can find with the most experience. That increases the chances of being in the majority who don't have problems afterward. I did that but still have to cath, but it is no big deal for me (although I would have loved to have been in the majority who can just urinate normally).

Best of luck on the surgery!
Mike

Check back with us and let us know how it goes.
When recovering, you will not feel like it but you MUST walk every day. Also, chew gum the day after the surgery and every day until your intestines wake up. This (walking and chewing) does absolute wonders for recovery and makes a HUGE difference in recovery time and how soon you will be able to go home.

It's going to be rough for a while but then it gets easy, and then it's all just a part of life and no big deal. At times, it won't seem like it but, trust me....it will.

DO NOT LIFT ANYTHING MORE THAN A QUARTER POUNDER WITH CHEESE. Lifting darn near anything can lead to numerous hernias. Just don't do it. Take it very easy after surgery and you will be fine. :)

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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9 years 2 months ago - 9 years 2 months ago #31742 by FarRed
UMC in Tucson, Dr Nguyen (cystectomy) and Gretzer (neobladder). BTW, you look a bit young.

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

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9 years 2 months ago #31741 by Patricia
HI FarRed...i'm probably the only night owl up right now and wish the guys were here to support you.
I can tell you with the removal of the prostate according to the other guys on the site its a breeze to cath and no pain...unless there is some sort of stricture there which i hope there is not.
The mucus is an issue for a while but it lessens over time and passes easily after the first several months.
Sorry you didn't find us sooner.
Where are you having the surgery done?
Pat

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9 years 2 months ago #31740 by FarRed
I was diagnosed in March with T1 high grade. It was all though my bladder so am going for the neo-bladder--tomorrow at 0730. I came across this site after googlng the mucus issue and appreciate reading about everyone's experiences.

The doc said the side tube comes out at three weeks, and the cath a week later. When he told me I'd have to do "maintenance" and described it, my eyes bugged out. After dealing with BPH for a year, caths mean pain and scare me, not to mention making me very nauseous. After my first TURB, they tried to flush my bladder because the cath got blocked. and I almost passed out. I hope it's different with the neo. He said I could come to his office to have it done, saying it would be only once a month. At least I won't have a prostate to go thru anymore.

Am I going to be able to avoid this maintenance if I keep up the water?

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

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