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Just diagnosed with stage 3 CIS

9 years 8 months ago #24960 by mmc
I had the radical cystectomy/prostatectomy in October and got the neobladder. When I asked my uro about self cath, he said "Why would you want to do that?" I have never had to self cath or any other cath since getting my surgery. However, I do wear a condom catheter at night so I can sleep through the night because I still don't have night time continence.

When I asked about Indiana pouch, neo, and ilieal, it came back from other members of this group that no matter which one you choose, most people seem to be happy with their choice. There are exceptions but that seemed to be the general case. See the thread "To neo or not to neo, that is the ?" on this site and see what others had to say.

You are correct that the ilieal conduit is much shorter of a surgery and I think also has less potential for side effects. However, I'm pretty happy with my neobladder. I expect in a few more months I will have night time continence and be good as new.

My surgery was open and not the robot or laparoscopic. It's just what my doc prefered.

Glad you found the site and I wish you the best of luck in your decision and long term outcome.

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 8 months ago #24956 by balihigh
I had a radical cystectomy in Sept. and have the illeal conduit. I am a 60 year old female who is very active. The "bag" suits me just fine. I can do everything I did before my surgery and it is very easy to take care of. People told me that they didn't want a bag hanging on their stomach. I actually was given no choice since I had ulcerative colitis and the neo and Indiana pouch were not options for me. I was very diappointed at first but I have had absolutely no problems adjusting. I walk at least 2 miles a day, do gardening, and went on a trip out of the country for 2 weeks. If you have any questions, I will be glad to answer them.

This is a very personal decision and everyone is different. What may suit one doesn't the other. I tell people to make a list of the pros and cons of each diversion and match it with your lifestyle and personality.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
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9 years 8 months ago #24954 by Blnmakerr
Pat:
My exporatory surgery was done by Dr. Brian Lane. I am getting a second opinion from Dr. Eric Klein, the head of the Dept. of Urology. I hope to have second opinion by Monday and then to set up a meeting with Dr. Klein.

I had been leaning toward the Ileal conduit, but the Indiana pouch is certainly worth exploring ....
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9 years 8 months ago #24953 by Patricia
Hi Blnmakerr
You've come to an excellent site and you're also at an excellent institution at The Cleveland Clinic. I had my cystectomy and reconstruction done there in 2003 by Dr. Inderbir Gill who has just recently accepted the position of the head of the Keck School of Medicine at USC/Norris. He did my surgery laproscopically. I have the Indiana Pouch and am female and it suits me just fine..no worries about incontinence and its easily trained...well it takes some time but certainly doable. You still have to cath but the pathway to the pouch has no nerves so certainly not as delicate as having to pass through a very touchy urethra. I only have to cath 4 times during the day and I have the pouch trained to let me sleep through the night. Many men have great success with the neobladder and i don't hear that they frequently have to cath like women do with a neo. And many men have the ileal conduit. All seem to adjust.
Are you seeing Campbell or Stephenson? I just happened to know them both as they worked with Dr. Gill.
Fire the questions away.....Pat
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9 years 8 months ago #24952 by Blnmakerr
I am new to this forum but am seeking info and advice. Last week (March 31st.) I underwent a two hour exploratory surgery at The Cleveland Clinic and 12 biopsies were taken of my bladder and prostate. The pathology showed invasive CIS in my bladder that has spread to my prostate. CT scan shows NO increase in size of the nodes.

The surgeon has told us the ONLY option is a complete RC and prostate removal and that IF the nodes are clear, I have a 75% chance of being cancer free.

I have done the basic research on the three urinary diversions and am leaning toward the ileal conduit simply because the surgery is shorter, complications fewer and there is no way I can self cath with a neobladder. I also am considering the Indiana Pouch as a second option.

Can anyone offer any advice to help me?

Thank you,
Blnmakerr
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