Confused & a Bit Scared

Snowy,
I to had an r/c on Sept. 14th of 2007, I now have the bag. Once I thought I cannot do this bag thing but have become use to the fact its part of my life now. I was stage 3 T-2, I have no cancer outside the bladder, a clean path report after surgery. My friend you will make it through, and you will survive, live isn't so bad with the bag, just a small incovenience. We do everything we did before, no problem traveling, it just seems unthinkable now, but after you are done you will see its all okay!!!!!Gene

I am a candidate for an RC, had my scans done, and am waiting for the URO appointment that will determine when the op is to take place. I am going with the outside pouch for several reasons. I am 64. I figure I will get used to it, will probably end up not thinking about it a lot, other times, might have to hassle with it. In any event, extending my life to enjoy my family, my grandkids, is my greatest consideration. There are a lot of other "disabilities" that would be a whole lot worse than this one. So, we should all take heart if we get that other chance.

Hello PeterK

Thanks for your response. I'm glad to hear that you are doing okay. I know that coming to terms with the bag is a matter of time, its just that the scale of the change is a bit daunting. I think that the sudden change of direction of the cancer has caught me a little unprepared.

Anyhow, thanks to all who have sent me good wishes.

Regards

Paul

Hello Paul,
I can relate to your story. My doctor for two years told me I had passed kidney stones until I finally saw a urologist who identified stage 3 bladder cancer and I had a RC in 11/07. So far, my follow-up tests are clean for mets. I didn't have any chemo and the operation was not that bad as long as you have pain drugs. I have a bag, which started out as a bother, but you get use to it and it doesn't hamper any activities. At 67, I decided that a neo-bladder sounded like it could become a nightmare. Yes(I am also pain free)you can really enjoy life even if you have to pee into a bag. I watch my grandkids grow, enjoy my daughter and friends as wellas fight with the wife of 48 years. Unfortunately, the american docs remove the nerve that enables you to have an erection, but there is a solution for it involving a needle into the base of the penis. Gene Beane is going to try it, and I am waiting to see if his dick falls off (HA HA). I understand some surgeons can replace the nerve with a nerve from your ankle. You might want to talk to your doctor about it. Paul, I hope your scans, etc. come up clean and God keeps you safe during and after your RC. Don't pay attention and worry about negative survival rate percentages, as my wife (breast cancer survivor)keeps telling me; "until you find out different you are in the percentage that survives". Let us know how you are doing.

Regards,

Peter Konomos
Tempe, Arizona

Thanks guys for the responses. I guess that feeling a bit down is all part of the problem. I think that the waiting is almost the worst part.

Regards

Paul

Paul there are 3 diversions you can get but you having suffered a heart attack the Ileal Conduit Bag is a less stressful and shorter surgery I have a friend who was in your boat ( had a heart attack ) and he has the bag and he is doing fine. I wanted the neobladder but when they opened me up I had cancer cells around my uretha so no neobladder so I got the Indiana Pouch and I am quite happy with it never leaks, it wasn't what I wanted but now I have learned to live it and I really like it things happen for a reason. The question is if the bag say were you're only choice would you be happy peeing into a plastic bag in order to live, I know I sure would. None of us wanted this cancer and no matter what diversion they give you nothing beats having your real bladder and then you have all the other consequences to deal with but it can be done. I have my days also some are good and some are not so good but I consider myself a lucky guy to have survived. All this piling up on you but you survived your heart attack and if you get the bag I guarantee you will be happy you did down the road life is so valuable and sometimes we have to deal with situations to survive. I wish you the best on your decision. Cheers, Joe