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Neo Bladder, Urostomy, Indiana pouch?

2 months 2 weeks ago #56579 by Teddybear
Hi Alan,
I just joined this group. The site you recommended was very good describing the three surgeries available concerning bladder cancer. I hadn't heard of the Indiana pouch before. Anyway, I need to make the decision as to what to do next. I had 12 courses of chemo and am now cancer free. I am a candidate for a neobladder, but the surgeon wants me to get a PET scan first and meet with him again to decide what's next. Any insight you can give me is appreciated. Thanks,
Fred

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4 months 1 week ago #56200 by mrbluesky
Thanks for your comments Sara Ann. All the best.

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4 months 1 week ago #56196 by sara.anne
This is something that you really need to research. For males a neobladder can be wonderful (after everything settles down) BUT it is a very complicated surgery with a long recovery time and you absolutely need a surgeon who is very experienced with this. Otherwise you are just "practice."

Robotic surgery is wonderful, but again it needs to be done by someone with a lot of experience. Too many surgeons of all types get a demo/training by the company rep and think they are set to go. I would rather have traditional surgery by a very experienced surgeon than robotic by a novice!!

And then there is radiation. I suppose that this can work, but the reports I have seen from patients who have been through it are not encouraging. Many patients appear to have damage to adjacent tissues and this can complicate things if it is finally decided that cystectomy is necessary.

Of course urostomy is the simplest surgery, but does come with its own issues....a bag.

Final word...if you read the stories on this Forum ....no matter which diversion people chose most seem to adapt well. You will also.

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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4 months 1 week ago #56195 by Alan
Keep posting as we all learn from each other. There can be a different or better approach in the UK for example. Yes, you do want someone with a lot of experience on this type of surgery.

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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4 months 1 week ago #56191 by mrbluesky
Hi Alan

I am in the UK but I can't find many people willing to share their knowledge or experience.

I will have to ask how many ops my consultant has done but the usual Neobladder consultant has just retired.

I have a feeling the more experienced are in London and use robotic surgery. I live in Birmingham West Midlands.

Thanks for your reply.

Cheers

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4 months 1 week ago - 4 months 1 week ago #56188 by Alan
Mrbluesky,

Welcome to our exclusive club! Sorry for the reason to be here.

To answer directly I am giving you a link to a very good read on the 3 types of diversions: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

For some reason it won't hyperlink so just copy and paste. For most people their decision of which seems to be well accepted after the fact and surgery. After all, one is choosing life. I have not had to have a cystectomy but, it is always in the back of the mind.

Two quick extras. Radiotherapy, and I think I am understanding you mean this as radiation, is normally not a good option before cystectomy as it often damages some of the tissues used in some of the procedures. Also, be sure to pick a center that does a lot of these. A major bladder unit of a teaching hospital or university setting. Then, you want a surgeon that does at least 25-35 of these a year (or more). Somewhere...and I can't find the link that is considered the threshold for the best experience. What area of te country do you live as someone may have a good reference. For me, it would be MD Anderson as I live in the San Antonio area and it is 2.5 hours away.

Keep posting as you have questions.

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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