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radical cystecomy

1 year 7 months ago #53317 by Hannah01
Hi Razor, sorry to hear of the trouble. I wish Mitomycin, works and you find good suggestions here..Good luck!!

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1 year 7 months ago #53307 by Cynthia
Radar it is always best to think one step ahead of blc if you never need the info there is still compfort in having a battle plan. There are several world class guys that I have in my short list in the this country, it would depend on where you are or if you are willing to travel.

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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1 year 7 months ago #53306 by Cynthia
Radar it is always best to think one step ahead of blc if you never need the info there is still compfort in having a battle plan. There are several world class guys that I have in my short list in the this country, it would depend on where you are or if you are willing to travel.

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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1 year 7 months ago #53302 by Alan
Razor,

Sorry you have to face what is going on but, welcome. First, let's hope mitomycin works!

If it comes to a cystectomy you want a practice that does a LOT of these. 50+ a year. Too many see mostly prostatic cancers. A big teaching hospital or group that has a specialty in bladder cancer like MD Anderson as an example.

Also, I am linking a bookmark that many of us have used on the 3 main diversions to plan ahead. I am not sure our hyperlinks are working so copy and paste: https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

Good luck as post with any 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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1 year 7 months ago #53301 by Razor
The three rounds of BCG treatments have not worked and so we will try a course of Mitomycin. If this also fails I am looking at a radical cystecomy. I would appreciate any comments as to what I should know and what I should expect. Where is the best place to go for this procedure and who are the best doctors. I am 73 and have an active sex life. I would want every attempt to avoid damage to critical nerves. Thank you.

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