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facing a radicl cystectomy and terrified

3 years 6 months ago #50565 by Plk
I know just how you feel. I had a radical cystectomy in October. Cynthia's advice is excellent, she has been a guiding light for me on this journey. I did not have the option of a neobladder because of where my tumor was either. I too have an Indiana Pouch. My stoma is in the upper right quadrant of my abdomen because of prior abdominal surgery that I had. I drain about every 4 hours and have adapted pretty well, though every once in a while there is an accident.

There is life after this surgery. Just get a good experienced surgeon and follow his/her advice, it is a big surgery but you will get through it. I go out, I dance, some execise s more difficult, but I will get there too. aNd 3 months later there is no sign of cancer in me, and I hope it stays that way.

Wishing you the best and please let us know how things are going for you.

PLK

PLK in NJ
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3 years 6 months ago #50551 by sara.anne
Cynthia has given some really good advice, and she is an expert on this subject. I will just echo some of her advice. Don't let any surgeon remove your bladder who has not done hundreds of these surgeries. When I was first diagnosed (and I have not had my bladder removed) my urologist told me that if it ever came to that he would INSIST that I seek other opinions!!

Here is a link to a site that describes your options very well

https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

Wishing you the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 6 months ago #50550 by Cynthia
Mary,

I can understand where you are because I have stood in your shoes almost ten years ago. Now I will preface this with I have no idea about the specifics of your situation. What I mean by that is where your tumor is can have an impact on the type of diversion you are offered. Another is the surgeon and what type they are trained in. I have an Indiana Pouch with my stoma in my naval I use a catheter about every four hours or so to drain it and it works well and is continent, get up once a night. There is also the Neobladder that keeps your original equipment so to speak and you void normally after training the new bladder. These do not have as much success in females as males but work well for many. This was not available to me due to the placement of my tumor. Now having said all of that the first surgeon I saw offered me the bag as you call it and nothing else I had to get another opinion. You want you surgeon to have done a high volume of Radical Cystectomys. For example the first surgeon I saw did five or six RC's a year the one that did my RC did that many a week. If you feel you would benefit from a second opinion before making any decisions let us know what area of the country you are in we may be able to give you some direction.
Even if you are not able to have another choice of diversion here are some words of hope. One of the things I have noticed in all the years of dealing with this forum is that people adapt. None of this is our choice but we have to deal with it and deal with it we do. We all go through a time we morn what was and then we have to except our new reality. Right now it is all new and raw and our imagination are often times far crueler than reality in most cases. I know this does not make it any easier for you now but we are here for you.

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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3 years 6 months ago #50546 by cancersucksbigtime
I haven't posted for a while. I underwent two pretty tough chemo treatments in December. Couldn't do the third and last one thanks to kidney function numbers not good.
I have a CT scheduled for Feb. 8,then a visit with the oncologist. On Feb. 11 I get to see a surgeon who will explain the procedure that I am dreading.
I so do NOT want to have a bag attached to my abdomen that will need to be emptied and the thought of having a bag hanging from my bed at night makes me sick to my stomach.
I am totally freaking out and scared. Could anyone share their experiences with me - both incontinents and continents? I would very much appreciate hearing from you.
Thanks,
Mary
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