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Making surgical choices and need input.

7 years 6 months ago #40555 by GKLINE
I am 3 1/4 years out after having a Radical Cystectomy with nerve sparing procedure. I did not have an IC. I have no bag or stoma. I seem to function as I did before surgery but I still have leaking issues that probably will never go away. But I still do not question the procedure I chose.

I guess the real issue here is making a choice of procedure and sticking by it. They are ALL good. I know Mike will chime in here and have his case made for IC. But they all have their quirks. I am good by my choice and don't fret at the shortcomings.

My philosophy has always been; "Make the BEST decision with the information you have at hand...... And live with it." Don't look back and second guess yourself. There is no PERFECT choice in this case, they all have their plusses and minusses.

Good Luck. I am absolutly sure you are making the best of this. I can tell by your concise post. Your husband should be proud to have you helping.


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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7 years 6 months ago - 7 years 6 months ago #40554 by danielle
Hi there..Well I certainly believe you have made the correct choice thinking to have the IC procedure. My hubby had it done 30 months ago and although in the beginning (5 weeks)it was a little difficult to get accustomed to the pouch, it has now become second nature....He swims, plays tennis and the IC is not a problem to maintain.

Did your husband have chemo treatment before the operation?

Good luck with your final decision.


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7 years 6 months ago #40553 by motomike
My surgeon gave me a choice. I spent several days & nights reading threads and web sites and decided on the IC. I feel it was a correct choice for me. I had to become comfortable with my “nurse duties” every 3 or 4 days (changing the bag). I have always done this myself and finally became used to showering and cleaning around my stoma. At first I was very intimated by the stoma. It looks like raw meat but I have learned that it is pretty tough. There are several here who have had the IC and may be helpful as you have questions about the care & treatment of the stoma and the bag.

As difficulty as it might be to think of these different types of surgery- remember it is the end result that is the reward. My surgeon came in and announced that I was “cancer free”.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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7 years 6 months ago - 7 years 6 months ago #40549 by Alan
I haven't had to do a cystectomy due to being non invasive but, still read the forum. Thus I don't have any advice or experience for a cystectomy however I have bookmarked a great read from the Cleveland Clinic with pros and cons. At the same time read other former threads and you'll see many posters actual experiences. With this being Christmas Eve you may not see a lot of posters for a few days but, some will add to this in the next week or so. The good news is tis is a beatable cancer!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 years 6 months ago #40548 by Cynthia
Posted from my email

My husband has advanced bladder cancer. He is scheduled for cystectomy/prostatectomy on Jan 3.I have been reading about various sx procedures & need personal input from patients regarding their experiences. I am leaning toward IC
Due to potential complications. Sx will be at Georgetown Univ in DC. Thanks.


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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