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BCG fails, what next?

1 year 2 months ago #54168 by pjallen820
Joe, thank you for responding to my post. I am leaning towards the Ileal Conduit. I want the simplist transition possible and down the road should not be as difficult either. I am glad to hear that you are doing so well. Sure like to hear stories like yours. Thanks again Pat

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1 year 2 months ago #54162 by Jmitchell418
Pjallen820,

I am 14 months post radical cystoprostatectomy with an ileal conduit. I went through all the same research and decided that the IC was the best choice for me. I don't have a desk job and I'm moderately active all day climbing ladders and such. I have had no issues with the IC in doing anything I want to do. I have also had no appliance leaks and regularly get 1 week out of each appliance. I spend only about 20 minutes once a week in changing the appliance.

I chose the IC for a few reasons. I didn't want to make a decision that best suited me at 45 years of age that made life more challenging as I get older. The IC can be maintained by a caregiver if that's where my journey takes me. More importantly, I chose the IC because for me, I saw it as the quickest way to adjust to a new normal and get on with life. I knew, personally, that I would struggle with the mental fortitude to train a neo bladder. 14 months later, I have no regrets.

Stay strong.. You'll beat this. Best of luck to you.

Joe

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!

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1 year 2 months ago #54135 by pjallen820
Thank you Sara Anne. You have brought up some very valid points.

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1 year 2 months ago #54134 by sara.anne
So sorry to hear that. The answer to your question depends on so many things. And you will probably hear that people will each of the diversions do become used to them and live full lives, whichever one they have. Here is probably the best brief discussion of all three:

https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

One of the first things to consider is your sex. Women are not as successful with the neobladder as men. Physical condition is another; whichever diversion this is major surgery. The ileal conduit is the simplest surgery. But the most important factor is THE EXPERIENCE OF YOUR UROLOGICAL SURGEON. Can't emphasize this enough. You need to have a surgeon who does many of the diversion you choose. And this means at least several a week with a record of hundreds. Many urologists who are not bladder cancer specialists are really only trained to do ileal conduits which leads them to "recommend" this surgery to everyone! Be sure to discuss his experience and record with your urologist; you wouldn't take your expensive sports car to the corner garage for extensive service, you would seek an expert. You need to be treated at a place that specializes in bladder cancer such as an NCI designated cancer center, a medical school, or other MAJOR cancer facility.

Much urological surgery is now done with the "DaVinci apparatus" in which the surgery is done robotically. This can be an excellent choice. However, again it depends on the experience of the surgeon. Many hospitals have invested in this extremely expensive equipment but their staff has not had a lot of training using it. I would rather have traditional surgery with someone with years of experience in the procedure than robotic with someone still learning.

Please feel free to ask any questions that may come up as there is bound to be someone here who has "been there, done that."

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 2 months ago #54133 by pjallen820
BCG fails,what next?
I have high grade,T1, plus CIS. I have gone thru 6weeks of BCG and it failed. Looking at taking out my bladder, deciding on which of the three urine collection options should work for me. Any input would be appreciated.

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