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Men with neobladders -  to talk with my dad

13 years 9 months ago #1397 by mikmckna
KH,

Just wanted to touoch base and see how your dad was doing. He is actually 1 week ahead of me with the RC and Neobladder. My surgery was 8/22.

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

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13 years 11 months ago #1028 by rentanag
Hi Karen & KH,

I'm going to stick in my two cents worth here, if you don't mind.  Although I'm not male I do understand the frustration felt by both your fathers not knowing what to expect with their neobladders and with life in general since becoming a cancer survivor.  One thing I know for sure about why they don't tell you everything about what to expect after your surgery, is that each patient is completely different and to tell you all the possibilities could actually frighten a person into not having the surgery.  That is not the right decision to make in most cases, and so they tell you very general things about what to expect.  
Keep trying to reach someone on this sight who might be able to communicate with them, you might need to be a little pushy about it to get a response. I do know of a male who had this surgery, but his experience would not necessarily be equal to theirs because he was in his thirties when he had his surgery.  His name is Roger Barton, and his story is on the storyboard here, and also under tales from the trenches and you can find a link to the trenches on the home page for the Web Cafe.  Reading his story might be as beneficial to them as talking with him because if I remember correctly he gives a very detailed acount of his experiences.
One suggestion I have would be to look at other stories from the trenches for men that might be closer to your fathers ages, and also perhaps go page by page through the storyboard front to back and look for men's stories close to their ages.  You might have to actually open some of them up before you can tell if a story is about male or female and their particular ages.  There is a book I've mentioned on some of my previouse posts and also it's mentioned on the Web Cafe under resource's or something similar and that books title is... THE GUIDE TO LIVING WITH BLADDER CANCER by Dr. Mark P. Schoenberg.  The book is written specifically for patients and therefore is easily understood (I believe), and I don't recall exactly the cost but it's definately not very much money.
I hope I have given you both a little information that might help your fathers with their frustrations and perhaps eleviate yours some as well.  Best of luck in your search for further information.

Lou



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13 years 11 months ago #1026 by KarenE
Hi KH,

My Dad just had his neobladder "installed" on the 17th of July.  I have posted - a few down from here - about cancer in his lymph nodes and asking for anyone who would be willing to talk to my Dad about their neobladder experience.  I have PM'd a couple of people, but they haven't opened their PM's.   If you want to call me I would be happy to tell you how it's going.  They don't tell you everything you will experience that's for sure!!!!
Please feel free to call - (949) 248-7670
My Dad is 72, active, still working - but this has made him think about retiring and enjoying life!, is a great walker and he and my Mom go on walking vacations every year.

Karen

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13 years 11 months ago #1025 by khetzel
My father has been battling bladder cancer for almost 10 years (3 recurrences over 10 years)...multiple BCG instillations over the years.  Latest BCG treatment in January 2006 - cancer "still there" 6 months later.  Dr's think the cancer is becoming more "aggressive" and have recommended RC and neobladder (they say he is a "perfect candidate").  At this point, my father is ready to have his bladder removed - and anxious to get on with his life.

He is scheduled for surgery August 16th, 2006 - only 2 weeks away.  

I am wondering if there are any men out there who have had a radical cystectomy and neobladder that would be willing to talk to my dad.  He isn't sure what to expect after the surgery and is not really talking to anyone about it.  I'm not sure that, even if he did talk to me about it, that I would be able to truly understand his feeling and apprehension about this major surgery and subsequent life change.  

My dad lives in PA, is 66 years old and VERY active - loves to hike, paint watercolors, LOVES bird watching and nature.  

Please email me (or send me a personal message through the website) if you would be willing to answer his questions.  Even if you are willing just to post your own experience in response to this "question", I could print them out and give them to my dad to read.  I think it is important for him to be in touch with someone who has been through this already - and to know that he'll make it!

Thanks!
KH

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