Home › Forums › All Categories › Newly Diagnosed, New To The Forum › Surgery tomorrow for neo bladder
-
Surgery tomorrow for neo bladder
Posted by FarRed on May 6, 2010 at 3:53 amI 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 Tucsonreplied 14 years, 8 months ago 4 Members · 11 Replies11 Replies-
GuestMay 22, 2010 at 3:17 am
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 -
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, MichiganNope, 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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.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 TucsonFarRed,
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.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 TucsonGuestMay 6, 2010 at 5:27 pmWow 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.
PatFarRed,
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!
MikeCheck 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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.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 TucsonGuestMay 6, 2010 at 4:13 amHI 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?
PatSign In to reply.
All services of the American Bladder Cancer Society are free of charge to everyone.
Information on this site is not intended as medical advice but rather to help you formulate questions for your medical team. If you are having a true medical emergency, please seek immediate attention at a qualified care facility or from a medical professional.
ABLCS is a 501(c)(3) non-profit organization
© American Bladder Cancer Society, Inc.
Cookie Policy Acceptance RequiredCookies are used to ensure the best experience on our website. You must accept the Cookie Policy to create a forum post or to load the Contact Us form. If you do not accept the Cookie Policy, you cannot create an account, Sign In to the forum, or load the Contact Us form.Functional Always active
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.Preferences
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.Statistics
The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.Marketing
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.Cookie Policy Acceptance RequiredTo provide the best experiences, we use technologies like cookies to store and/or access device information. Consenting to these technologies will allow us to process data such as browsing behavior or unique IDs on this site. Not consenting or withdrawing consent, may adversely affect certain features and functions.Functional Always active
The technical storage or access is strictly necessary for the legitimate purpose of enabling the use of a specific service explicitly requested by the subscriber or user, or for the sole purpose of carrying out the transmission of a communication over an electronic communications network.Preferences
The technical storage or access is necessary for the legitimate purpose of storing preferences that are not requested by the subscriber or user.Statistics
The technical storage or access that is used exclusively for statistical purposes. The technical storage or access that is used exclusively for anonymous statistical purposes. Without a subpoena, voluntary compliance on the part of your Internet Service Provider, or additional records from a third party, information stored or retrieved for this purpose alone cannot usually be used to identify you.Marketing
The technical storage or access is required to create user profiles to send advertising, or to track the user on a website or across several websites for similar marketing purposes.