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Cystectomy Decision Hell!

14 years 1 month ago #1410 by wendy
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14 years 1 month ago #1388 by timb
Concrete work? Yikes! I can understand why you'd be concerned. Ive heard different things about physical labour post cystectomy. some people have said that you can eventually do it again but only after a year or so and others that its hard to regain the stability after abdominal surgery and of course the continence issues. Id get a few opinions on that if you haven't already and its a pivot point for your decision Don.



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14 years 1 month ago #1387 by skypilot
I am going thue the same thing I am having one uro old school say take out the bladder and the second opinion saying to try interferon mixed with bcg, For 6 treatments I am staged a t-1 same as last 2 turbs one in feb one in May after bcg. I am thinking I will try a second shot of BCG and the interferon and if it does not work have my bladder removed. By the way my age is 57. I do at times fell like getting it over with but then I really am concerned becouse of the concrete work I do is pretty physicle . Don

Hanging in there!

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14 years 1 month ago #1385 by timb
Hey Mike

Since the above Ive decided to go down your route and have RC with neobladder and (I hope) nerve sparing.

Im looking at recurrent CIS in spite of I think (!) 5 cycles of BCG. Ive had BC for 14 years - always superficial but with a grade 3 tumour a year and a half ago with CIS.My logic is that, statistically, the Cystectomy has a better cure rate the earlier I do it. Its been a horrible decision but i really genuinely feel more relaxed now its made! I still have moments of doubt but this isn't a small thing. I know its not going to be easy but I have met with cystectomy patients under my own surgeon and they live very full and happy lives. Plus the last person I met looked incredibly healthy! As I said above.

Its always great to hear from people like yourself who have gone down that road and feel positive about their decision. I can't say its not scary but now im just keen to move forward. I would add that I lost my father to BC 4 years ago so I know what it can do.

To answer your question; my cystectomy is elective. the hosital would continue with the BCG for a bit longer as my disease is still superficial they think, however, that cystectomy is my best option. i don't want to lose the survival advantage of removing it early in the disease process. Plus Ive fought this off and on for 14 years, I'm a bit weary and it seems like it will move me into another more proactive direction. And I trust my surgeon to do a decent job.

mostly I want to believe its a kind of re-birth for me. its only now im realising the toll on my pyche the last 14 years has been!

Onwards and upwards. My best wishes to you my friend. I, and many others here, know how bloody hard it is to be in your situation and have to make these horrible choices. I'll keep you posted and let me know how you get on :)

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14 years 1 month ago #1369 by mikmckna

Just wondering what your choice was? Sounds like we were both facing the RC question at the same time. I am 4 weeks out from RC with Neobladder. I am not going to say it's been easy but I am happy with my choice. Let us know how you are doing!

Believe in yourself,
T1-G3, CIS
RC w/ Neobladder 8/22/06

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14 years 2 months ago #1124 by timb
hey wendy
thanks for your reply. it just kind of became integrated in my life. like a toothache that never gets fixed. also, because these lesions were always a low grade for a very long time with no CIS nobody seemed overly concerned. me included. the last year and a half things have gone up a gear or two in light of the CIS and the G3. im 99.9% certain that I will be going for the cystectomy. I'm at the hospital tomorrow to tell them my decision. i think really, if i'm going to have such a radical surgery, then, as i said before, i may as well do it when it stands a good chance of success. to have it when the overall survival odds have sunk by 20 or 30 percent seems a little more desperate. or something!

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