CancerCompass message board discussion started by Robert98 on 5/28/2005 http://www.cancercompass.com/message-board/message/all,2147,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ This is new to me this message board. I have bladder cancer the bladder will be removed, Im told I will have a bag on the outside for the rest of my life. This is so hard for me to write. Has any one gone through this and what will I be expecting. Thanks to any one that will help. Robert98 Sat, 28 May 2005 00:00:00 GMT Hi RobertF. I just noticed you e-mail re: your bladder being removed. I am a 4 yr. rare bladder cancer survivor. Only 10 people in the world, 6 in the U.S. had or have this cancer called mucinous adenocarcinoma sarcoma. My cancer was like a broccoli stalk with a mushroom on top. It was against the bladder back wall on the dome. I didn't know which way it was going to go so my surgeon asked if I wanted to have a bag or have a new bladder constructed. I of course wanted the new bladder made if need be. I was very lucky because I had a pie section taken out of my bladder making it smaller and have never had any problem whatsoever. I know of a person who had a bladder made and she also is doing fine except she has to void a little more frequently. How are you doing now? Has surgery been done yet? Jean M. Bluriderjm Wed, 06 Jul 2005 00:00:00 GMT Hi, Just wanted you to know I had my bladder removed four years ago. I have a neo-bladder. Also, I had my left ureter removed five years ago and this cancer gives you very small survivor rate about 30% to 40% in a year's time. I am still here and I celebrate life every day. The key is to stay hopefull. Mary Mary Jane M. Wed, 13 Jul 2005 00:00:00 GMT Hi, I hope this helps you too. We talked to a very good doctor and he suggested that we do the external bladder pouch system. It works. My husband is only 57. We go back Mon. for a check up. As of April he was cancer free. We hope he stays that way. This is not what we wanted and we searched to find a good/excetional surgon. Rose 123 Wed, 03 Aug 2005 00:00:00 GMT I read your message. my fahter was recommended to have his bladder out and have a neo bladder put in. he is 65 years old with a ti and possible cis cancer. his urnine citology is showing caner and abnormal chromosomes so they are recommending being agressive with a grade 3 tumor. the bcg seemed to fail. what is the recovery like for the remova and what are they telling you the olds of long term survival are? thanks, Deb Heart Wed, 21 Sep 2005 00:00:00 GMT Hi, We had this surgery Last April in Kandsa City Med center under Dr. thrasher. We chose the external bladder. He will ware a bag the rest of his life. he is 57 and alive. and healthy now. It is the fear we first saw that I see in your. Dr. Thrasher gave us such mental and emotional relief. We learened how to deal and it is not big thig now. I wish we could have kept it but not with cancer. Rose Rose 123 Wed, 26 Oct 2005 00:00:00 GMT  On 5/28/2005 Robert98 wrote:This is new to me this message board. I have bladder cancer the bladder will be removed, Im told I will have a bag on the outside for the rest of my life. This is so hard for me to write. Has any one gone through this and what will I be expecting. Thanks to any one that will help.I am sorry to hear that you had to have that done. My dad just found out that he also has to have that done. we are all really upset and he keeps saying if i knew i could live a normal life. we dont want him to give up and we thought if we could talk to someone who has it done and can tell us things like how you feel do you live a normal life can you do the same things you always did. or anything else you can tell us that will help i would be greatful thank you so much Sandy07 Thu, 28 Jun 2007 00:00:00 GMT