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For George to illiot of neo that is the question?

10 years 3 months ago - 10 years 3 months ago #27425 by Jeff F
I underwent my RC in April, 2008 and had the ilial conduit. It works well and you can get a lot of help in here if you choose it and need information. The stoma nurses at the hospital can also give you information before you decide. I can do my work, which consists of some physical activity, swim, and am pretty much doing what I did before the operation. I change my bag every 5 or 6 days. I drain it maybe every 1-2 hours and have a night bag for collection during the night. I have had no complications. Usually, I don't know I am wearing it. To get down to the nitty gritty, I think it is a very important decision. I have seen a lot of successes with the neobladder in here and some not so successful. I think if you are young you should have the neo. There is a cosmetic component. The sex thing would tie into that. Otherwise, it is the same, probably no erections without medication. I am 65 and after a year of cystoscopes and other probing, I didn't want to see another thing up my urethra. Maybe this is short-sighted. But that is the decision I made. Good luck with what ever route you take.

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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10 years 4 months ago #27303 by kcnorthstar
I have had a neobladder for a little over 3 years now. I have been very fortunate in that my neobladder works perfectly. I am 100 per cent continet durring the day and usually also at night although once in a while I leak a little at night so I wear a pad just in case. I had the nerve sparing surgery and have no problems in that area. The only thing I would say is different is that I have to urinate about every 2 to 3 hours. My neo does not hold as much urine as my original plumbing. So I can say that my life with a neobladder is not really any differant than before. I am a very active outdoors person and the neobladder has not changed my activity level at all.
As far as cathing, I learned how to do it just in case I ever needed to in the future, but have never had to.
It is easy to do once you learn how.

My recommendation to you is:

Find the best surgeon and hospital you can.
Your surgeon should be one that has done hundreds of neobladders (or which ever RC you choose)
Ask lots of questions and learn all you can about BC and RC.
Keep a positive attitude. Life will go back to normal after the healing is done.


KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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10 years 4 months ago #27300 by mmc
George,

I never thought I would have to cath, but about 9 months or so after my surgery we discovered I wasn't emptying enough when I went so my neo stretched to about 800cc which is around double the size. Once I started doing the cath, I started doing it more and more because it was easier and faster.

I can tell you from personal experience that doing a self cath is no big deal at all. Of course the idea of it is freaky as all get out. Nobody wants things going in the out holes.

When you get the RC, they also remove the prostate. The prostate is the thing that makes the catheterizing a problem. Once you don't have it, then it's pretty easy. I mean REALLY easy to do.

I have continence just fine now during the day and just wear a condom catheter during the night so I don't have to set the alarm to go at night.


I'm pretty happy with the neobladder.

I also had the nerve sparing surgery and had feeling pretty much right away. Did not have erections though and still can't without 'the shot'. My uro said it can take up to 3 years for normal function to return and sometimes it doesn't.

In any case, doesn't matter what option you choose as the prostate loss part is the biggest issue.

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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10 years 4 months ago #27281 by reseda1420
I'm a little over a year into my neo and have not self cath'd. I would say a little earlier on I might have liked to have that option a couple times. I have gotten the impression that having to self cath is pretty unusual among male neo's. Seems to be more common among females. I only remember seeing 1 person on this board that is using self cathand that is to help him empty more fully. It is not that he can't go at all. He is also earlier in the process.

Keep in mind this is a really slow recovery process. You will likely be pretty mobile and mostly daytime continent in about 6 months. Night time is another story and you will see a slow progression in that area.

Looking back I am happy with the neo because it gives me the closest opportunity I can get to life before surgery.

Leeh

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10 years 4 months ago #27280 by GKLINE
From one George to another, "You have found a great place to ask questions."

I have a neo bladder, one year old, and I have never has to self cath. I may be unusual in this, so others may chime in with their stories. My only complications are incontinence and ED. I did have the nerve sparing surgery and am just now, one year later, just getting the feeling back.

My advice is nothing new, but it makes sense.
1) Make damn sure you have a POSITIVE attitude, it makes ALL the difference
2) Make sure your surgeon is an assembly line worker who has done hundreds of these procedures. Also make sure you are very Positive about him or her. If you feel as though he is treating you as a number, stand up for yourself and let him know you are a valued human being, and have a lot to do in your life!
3) Get to know your anestheisiologist. This person may be as important as your surgeon. Make sure they get all of your history and don't lie to them
4) Keep your family in the loop. Remember they are suffering right along with you. They want to help, let them.
5) Be a little selfish for yourself, but remember to be realistic. Your friends will want to be invilved too.

Your surgeon will give you his opinion, You will ask question, talk it over. Make it an informed decision.
The inconvenient things that happen will become a part of your daily routine. A good attitude will get you through this.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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10 years 4 months ago #27273 by Cynthia
We have a new user named George. He will be going to Mayo for his RC in late Sept. here is his question. He is looking at either the ileal conduit or the neo bladder. He would like feed back from men in particular. He is leaning toward the neo but is worried about the possibility of having to self cath. He has done his reading but is interested in the pros and cons from people that are actually in the trenches so to speak.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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