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Seeking input on diversion options

3 years 6 days ago #51724 by Nix
Since my brother went to Barnes/Dr. Bullock, I have nothing but praise for the Doctor and Hospital. My brother is celebrating 11 years with his neo bladder, he was 69 at the time of surgery. He has not had to "self-cath" but some of the others do, it does not seem to be a problem either way.
Good luck, and you found the right site to help you, everyone is so informative and helpful.
We have all been down this road called Bladder Cancer, and there are a lot of positive outcomes.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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3 years 1 week ago #51723 by Mizzou
HI, WE ARE IN THE MISSOURI AREA AND WOULD LOVE YOUR INPUT AS TO NEOBLADDER AND FOLLOWUP AT THE SITEMAN CENTER AT BARNES.

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3 years 2 months ago #51344 by Nix
I am late reading this, but I might be able to help. My brother @ age 69 had a neo bladder at Barnes, Dr. Bullock was his surgeon. Since that time he hasn't had any problems, however, I have read some patients do have some problem. He does not have to cath, but that does not mean your husband will not have to.
I am sure a surgeon will tell you what is best for your husband's particular case.
Good Luck, I hope this helps

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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3 years 2 months ago #51174 by SueH756
Thank you. My husband is 66, in good health, and is quite active. He maintains our rural home of 14 acres and is an avid fisherman, loves RV'ing and boating. He's a hard worker and doesn't sit around well.

We are in the process of scheduling an appointment with a doctor at Barnes Jewish hospital in St. Louis for a second opinion. We liked the first doctor very much but definitely got the impression the IC was his preferred diversion method and we want to know more about the other two. We're sort of picking a doctor out of a hat at Barnes, but I think we are going with Dr. Bullock based on education and experience at this point, if he can get us in quickly. If anyone has any other recommendations, we are open.

Thanks again.

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3 years 2 months ago #51173 by sara.anne
So sorry to hear about your husband. He has a hard road ahead, and is fortunate to have you on his team.

As for advice, please remember that we are not doctors, but know a lot of fellow patients! The type of diversion chosen is a highly personal and important decision. What is your husband's age, health, activity level? Often a surgeon will "push" the diversion he is most comfortable with.....and believe me, you don't want one doing one he has had problems with!

The neo is the most normal-like, when it is successful. However, when there are problems it is necessary to cath....but they will have removed the prostrate, so it is not difficult. I don't know of any major issues with the. Indiana...there can be adjustment issues after surgery, but that is true with all the diversions.

Your husband needs to get a second opinion at a major bladder cancer center where there is a surgeon who has expertise and a record of success with ALL of the diversions and who can offer impartial advice on what would be in the best interest of the patient. If you let us know where you are located, someone may have a good suggestion. Also, on our home page there is a Treatment Center Finder that may be helpful.

Wishing you both all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: dani

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3 years 2 months ago #51172 by SueH756
My husband will be starting pre-surgery chemo shortly followed by an RC probably in the fall sometime. The surgeon we saw presented the three diversion options but seems to really lean toward the ileal conduit; he doesn't even do the Indiana pouch anymore as he feels there are too many post-surgery issues with it. He does think Bill is a good candidate for a neo bladder but we still got the impression he felt the IC would be his recommendation. We are going to get a second opinion, even though we think this doctor is very good, lots of experience, does a lot of these surgeries, etc.

I wonder if any of you (or actually, many of you) could give us some real life feedback on your actual experiences with the different types of diversion methods, so we can make a practical, hands-on type decision? One thing the doctor mentioned with the neo bladder that my husband is concerned about is the need to self-catheterize. That does not appeal to him at all, but that is based on his one and only time being catheterized, which was for his TURB and for a week thereafter, and it was extremely unpleasant. So any and all info you folks can provide on your experiences with the different options would be helpful -- good and bad. We're not excited to be on this road, but it's the one we're on so here we go.

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