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CYSTECTOMY?

8 years 8 months ago #37937 by dukel
Welcome to this forum. It can provide both knowledge and comfort. Just some quick history on me. 64 yr. old male, neo bladder,for 18mo.
When i went to cancer center after my diagnoses, the mat'l they give me was out dated for years. That is when i found this forum. I had cancer twice before, but i never had a road map like this site can provide. I hope you will find as much info. and comfort here as i have. As far as you feeling you would rather not live, that is your choice. I and many on this site will tell you that not having a bladder is not the worst thing that can happen. 18 months out, I can do everything i did before. Not having my original bladder is not even something i think about on a daily basic. Do we all have such great results? Most of us do, but once in a while one of the people on here will have regrets that they had the surgery. I will be the first to tell you with cancer there are no guaranties. There is a great wealth of knowledge on this site. People like Pat will do all they can to help get you the best care that is out there. And in the process they may be able to save your bladder. If you don't feel the Drs. gave you enough info. that is okay. Get mad at the system, fight to stay alive, and then work to change the system. That is what this site is all about, and why people like Cynthia worked so hard to create and maintain it.
Wishing you the best!
Duke

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8 years 8 months ago #37930 by Patricia
where are you? Male or female? What have you had done so far? TURB and if so what did the pathology say?
If you want to read up on diversions heres a good one from the Cleveland Clinic.
http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx
Share with us and we'll help guide you.
pat

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8 years 8 months ago #37918 by Lynda
I can feel your frustration. My dr. was great, but since they don't live with this - they have no idea what to expect. And it's a vital body part that will take some adjusting to. Not an impossible task, just different. Depending on your method (bag, pouch, or neo) your life will be changed forever, but it's all very doable. I had a huge learning curve when I got my indy pouch, couldn't find anyone who had what I had (stupid HIPPA law), but you know what, you figure things out really fast and you'd be surprised at the ideas you come up with that don't require medical intervention. How to go out in public, take a vacation, just go to dinner, all you'll have to find a way to deal with - but you learned to crawl, then walk right? Basically the same thing, just now about going to the bathroom. I used to think that standing to pee was going to feel really wierd(yes, I'm a girl!), but not having to touch a dirty bathroom is great! And if you have an "urge" mid-trip on the turnpike, you whip out your empty saline bottle and take care of business!! (I know it sounds gross right now, but a some point you'll do it just like the rest of us.) My first suggestion is to find a Dr. that you like that has a better bedside manner. You two are going to be joined at the hip(literally) with follow-ups and check-ups for the rest of your life. Not conecting with this dr. is going to make it that much harder.

Lynda

3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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8 years 8 months ago #37917 by lustron591
thanks. i needed that! but i still think it's crappy that docs will introduce this idea without giving you ANY CLUE as to what it means, lifestyle-wise. a simple brochure -- with diagrams showing how things work -- would have been a big plus.

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8 years 8 months ago #37916 by Babsiebob
Ok I would like to tell you that I had a cystectomy with an ileal conduit, outside bag 3 years ago at 68 years old. I would not rather be dead, as a matter fact I do as much now as I did before. I am in the process of re-doing the shower in our master bathroom, digging out old seal on tiles and putting in new. It has been a long hard job but I am doing it. Back to the surgery, it takes a while to recover but you will be back to normal and wonder why your felt so negative about it, there are 2 other options of resection, neobladder and Indiana pouch, others on here have them and I am sure will explain them to you, By the way I am female. Good luck, have positive thoughts and think good thoughts.
Barbara

Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good

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8 years 8 months ago - 8 years 8 months ago #37915 by lustron591
here's a thought: my docs have introduced the idea that i MAY, EVENTUALLY, have to lose the bladder. not knowing anything about what life would be like after that operation, my first thought was that i'd rather be dead. i understand that they're preparing me psychologically, etc., etc., but it seems to me they should not introduce this idea without AT THE SAME TIME providing some info (a brochure? some patient experiences?) about what things would be like post-op. perhaps i exaggerate about my current doc's beside manner -- which could charitably be described as brusque and businesslike -- but none of the three i've been dealing with gave me ANY info about post-op living with a cystectomy.
(NOTE: I SEEM TO HAVE POSTED THIS IN "NEWLY DIAGNOSED," BUT THAT WAS A MISTAKE; DIAGNOSED 20 MONTHS AGO.)

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