Still trying to decide for sure

• By elsabe
• Reply 3319054
• August 24, 2012 at 9:05 pm
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Well, the surgery and recovery from the surgery is no picnic, but you get past that. As for the quality of life after radical cystectomy....... life is good after RC especially when you find out the cancer is gone! I had almost 10 years like you did of various trreatments, many recurrences. And I spent those years scared of losing my bladder. But I don't think there is a big life style change after RC. I was so scared before the surgery that life would just change so dramatically and it just hasn't. Well, yes, there could be complications and you can pretty much count on some sort of complications but you deal with that as it happens.

• By baxterh
• Reply 3319286 · In reply to 3319051 by jj803
• August 24, 2012 at 10:57 pm
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Thanks for the input. It sounds like you did have an ideal recovery. I don't know how to set up a conversation, but I sent you a friend request.

This is kind of scary for me because I am the one who suggested to my urologist it was time for a RC. He agreed that it was a smart move since I was really gambling going for more BCG treatments. He referred me to a surgeon who does nothing but urological cancer surgeries. The surgeon pointed out that the survival rate for people getting RC when they have superficial high grade bladder cancer is up around 80-90% but for those who have invasive cancer with muscle layer invasion, the survival rate after cystectomy is much lower. I am still in what they call the window of opportunity. The trouble with CIS is that it can get out of control very fast.

He gave me a pouch to wear for a few days just to see if it would bother me. In fact, it started itching on the third day so I took it off. I hope that doesn't indicate a problem down the road. It was just a dry run (joke intended). He said it takes 7-9 days on an average to get out of the hospital, but people have gone two weeks before their GI tract "wakes up".

I have this anxiety that I might find wearing a bag to be too irritating, and of course there would be no going back.

• By baxterh
• Reply 3319369 · In reply to 3319054 by elsabe
• August 24, 2012 at 11:38 pm
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Elsaba, thanks very much. They are going to do robotic surgery, meaning only a three or four inch incision. But it is very good hearing that you can live with it. Like I said to my previous reply, I worry about getting a reaction to the bag and wishing I could go back to not having one. I am thinking of things like skin irritation and rashes and thaings like that. If, of the other hand, I hardly notice it is there except when it gets too full, that would be great. Thank you again, and please add more if it comes to mind.

• By baxterh
• Reply 3319406 · In reply to 3319054 by elsabe
• August 25, 2012 at 12:04 am
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For Elsaba, I read up on the Indiana Pouch. My surgeon talked about it as a possibility. We chose the simple conduit (external pouch) because he said in my case there would probably be less long run problems. I can well imagine that you would find the Indiana Pouch an improvement over the external bag. I was wondering, when you wore the bag did you have any problem with skin irritation? I can also imagine that the external bag would cause more embarrassing problems like leakage.

• By McCycle
• Reply 3319673
• August 25, 2012 at 7:23 am
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It sounds like you are "doing your homework" and will be prepared for your RC, if you ultimately go that way. I don't have anything major to add to all the good replies given above except to say that my 73-year old husband tolerated the RC (and neobladder) surgery pretty well . . . except for his gastro-intenstinal tract taking a long time to wake up!

• By elsabe
• Reply 3320256
• August 25, 2012 at 11:30 am
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I think your choice of the external bag is a good one and is right for you. Robotic surgery is also a good choice - I had open surgery with a big incision that has given me trouble. As far as skin irritation....I never tried wearing a bag although I had a bag for about 2 weeks post-op (there were stents in my ureters that drained into the bag) and it did not irritate my skin. I think you can get cloth covers to put over the external bag that will keep your skin happy. As far as leaking, the Indiana pouch can leak especially at first - it spits out mucus. For me, this leaking has stopped (no leaks for the past 6 months). I don't think the external bag will leak once you get the right bag system for you- but I don't know this from personal experience, maybe others can chime in.