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Just Diagnosed with high risk bladder cancer

5 years 11 months ago #43763 by motomike
So 2013 will really be a new year and a new life for you. We will be watching for updates as you and your doc undertake RC. I also plan to do a blog addressing my rejection of my bag. I recently mentioned to my stoma nurse that having this medical “appliance” is not easy for a man. She quickly commented back that women have just as much trouble adjusting. I’ve been reading posts for 3 years but have seen nothing. I suspect that it is pretty personal. I’m pretty open so maybe I can help with a blog of my experience. Remember it’s an open wound and requires your 100% co-operation. There was a very positive spin to my surgery- in only a few days after surgery I was declared cancer free!

I was offered counseling a few days after surgery. It was poorly timed and I rejected it. This was a mistake.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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5 years 11 months ago #43762 by rlbwrn
just wanted to update my status. My wife and I went back to my surgeon friday 12/7/12 to go over several things based on comments learned in this site. I found out he has done over 200 of these surgeries. After talking with him I have decided to go with the Ileal conduit as it is the least evasive and shorter recovery time. I also scheduled my surgery for January 31 unless he gets an opening earlier in the month. Will update again after the surgery and I am up and around.

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6 years 1 week ago #43675 by rlbwrn
Thanks to all who have posted and the other links that some of you have given me. It is helping to understand the different options. As everyone knows what ever decision I make I have to live with the rest of my life so want to make sure I am completely comfortable with it.

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6 years 1 week ago #43669 by mmc
I had a similar question a few years ago when I was facing the question. I am just a young punk though and was still in my 40's when I got mine removed. I got a neobladder and am glad I did even though I have had a bunch of complications. I'd probably have gotten the Indiana Pouch if I knew all then but I'm just fine with what I have. Doesn't sound like a neobladder is one of the options you are considering but as you will see if you follow the posts in the link below, most everyone winds up pretty happy with what they picked.

http://bladdercancersupport.org/bladder-cancer-forum/6-men-and-bladder-cancer/21043-to-neobladder-or-not-to-neobladder-that-is-my-.html

Best of luck!
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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6 years 1 week ago #43666 by motomike
After reading many threads here and elsewhere I decided on the bag. That was in 2010 and it has become a regular thing. I did have a difficult time adjusting to the bag but the problem was me (not the bag). I have been known to be impatient. Now I deal with the bag only every 5 or 6 days when I change it. Leaks are common at first but eventually become history. There are many many variations in the bag designs. Stoma nurses are important in determining what shape bag is most comfortable. It takes a long time for the swolin area to relax after surgery. I’m retired but still do what I want, like mow the lawn or hang Christmas lights from the eve of the house. Life goes on- it’s just a little different.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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6 years 1 week ago #43650 by danielle
Hi there, yes it certainly must be a shock for both you and your wife...It's not easy in the beginning getting used to your new situation, but having an ideal conduit does become second nature and really not so difficult to handle.

My husband, like yourself was very frightened and confused as to what was going to be the best solution for him...I am glad for him, that he decided on the ideal conduit, as we personally know people our age, 72 years, who are struggling physically with their neo bladder...

What I can advise you, is to make sure that you mark the place for your stoma below your trouser waistband, otherwise that becomes a problem...

I know people here, are so helpful, and have given so much useful advice...Be strong and keep your chin high..You'll see it will all be OK..You are in good hands here for their advice..Bless them all.

Danielle

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