CancerCompass message board discussion started by Penguin on 10/22/2005 http://www.cancercompass.com/message-board/message/all,3236,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Like many of you I have done extentsive research on bladder removal and neo bladders. My doctor, Dr. Joseph Smith at Vanderbilt Hospital, Nashville, TN does over 300 of these surgeries a year. I had my consultation with him yesterday, I'm having a radical cystectomy, he expects me to be in the hospital for 4-5 days and home with a catheter for 3 weeks. With recovery in 6-8 weeks. Being able to control your urine will be a personal thing knowing what your body is capable of, it is different with everybody. He expects I will be up and walking the day of the surgery. The surgery should take about 4 hours. I urge anyone to come to Nashville to have this surgery. Dr. Smith is a leading expert in neo bladder surgery, people come to him for all over the world. There is no need to go through 8 hours of surgery. A little about me, I was found to have several T3 tumors back in 1993. Had surgery to remove and 6 weeks of bcg. For the next four years the tumors came back. I have been cancer free for 8 years and two months ago started having trouble again. Turns out this tumor was T2 very invasive, going into the bladder wall muscle. So it has to go along with my lymph nodes and the internal portion of my prostate. He expects me to have full function (sexual speaking)of course I will not produce any semen but I will not lose any enjoyment. I will give a weekly update. Anyone that has any questions feel free to email me and I will tell you how the the plan is progressing. Penguin Sat, 22 Oct 2005 00:00:00 GMT Hi, We did this last spring. It tooks us two weeks as the stitches melted too soon. The experience otherwise was wonderful. If you take morephene after surgery, it may slow your release time. They dont' want you to go home until you can "go". But the don't tell you that morphene is constipating. There are other things to help with the pain. We were very happy with our doctor and the hospital. Husband is doing well and we are finally in wafers that are working well. Most of your companies will send you samples of what you and yourdoctor think will work. It is worth looking into. Best wishes for your surgery. Rose Rose 123 Wed, 26 Oct 2005 00:00:00 GMT How are you doing? What did the doctors finds when you had the sugery? Have you had any complicationss? My dad had the sugery in Oct and has experienced threee complications so far. Hes had a blood clot, abcess and now a blocked ureter. All of these are correctable but very unpleasant and takes a toll on him. Id love to hear about your epxerience. Deb Heart Thu, 12 Jan 2006 00:00:00 GMT Hi Deb, I am sorry to hear that your Dad is having a rough time. I am happy to report that I have had no complications and after 10 weeks I am pretty much back to normal I would like to go longer durning the day between voidings but that will come with time. The main tumor was a very invasive (into the fat layer) grade 3 I was lucky that it stayed in my bladder so we got it all. At my first big check up the doctors were very happy with my progress and said I was way above the average and don't have to see him again for six months. If there is anything I can do to help your Dad please let me know. Tim Penguin Thu, 12 Jan 2006 00:00:00 GMT Im happy to hear things are going so well for you. Did you end up getting the neo-bladder? how long was the sugery? My dads took 71/2 hours and they used a robot to remove the bladder and prostate. Did they take out your prostate? are you going to need chemo? Take care! Deb Heart Thu, 12 Jan 2006 00:00:00 GMT Yes, I did get the neo bladder the sugery only took 3 hours they removed 12 lyphnodes and hollowed out my prostate (nerve sparing) I will not need chemo as the path reports all came back clear. The shorter sugery time is most likely one of the reasons for my recovery time my doctor uses the robot for some of his prostate sugeries but not for the RC Tim Penguin Thu, 12 Jan 2006 00:00:00 GMT why doesnt the surgeon use the robot for the rc? We were one of the first to have the rc with the robots and i wonder if this is why dad is having so many complications. his sugery nerve sparing also took 7 hours. the robot was supposed to reduce the risk of complications. dad ended up having prostate cancer just by chance he didnt know he had it. so for him it was a blessing that they took his out. all of his nodes etc were also clean. thanks for the fast reply! Deb Heart Thu, 12 Jan 2006 00:00:00 GMT I asked my doctor if he would use the robot and he said the robot was not the best choice for a RC he perfered to do them by "hand" the outcome is better.I don't know what he ment by that I was happy to know that he would be in there and not a machine. also anytime you are one of the first to try something new the complication rate can be a factor. How many RC had his doctor done prior to his with or without the robot? Tim Penguin Thu, 12 Jan 2006 00:00:00 GMT he did 330 prostates and only four other rcs. he does do about 5 per week, Heart Thu, 12 Jan 2006 00:00:00 GMT So are you saying that he does 5 RC aweek with the robot and 4 without or is it that he has only done 4 RC Penguin Thu, 12 Jan 2006 00:00:00 GMT dad was #5 on the robot list which we didnt know until the day of sugery. he told us he has used the robot a lot and that the recovery is better. it wasnt until we were being prepped for sugery that i was much more specific and the resident said hes done 300 prostates and only four other rc so dad was #5. the resident said hes still using the robot but im not sure how often. Heart Thu, 12 Jan 2006 00:00:00 GMT Deb, If it was me I would ask the doctor for phone numbers of the other 4 and see how they are doing also it sounds like his doctor is a good prostate man but may not have the needed experience on RC and that is why the complications are what they are.Is your Dad active? is he in pain? and if so where is the pain? and is his doctor surprised at his outcome. Tim Penguin Thu, 12 Jan 2006 00:00:00 GMT His doctor is one of the leading doctors in the RC areas in illinois and is a speaker and author on the subject around the world. This was the reason we used him. He also had the sugery done at a major University setting. Asking about the four others is a great question and i will mention it to dad. His abscess and clot are now gone but he is left with having to take a blood thinner for the next six months. Dad goes in to have his tube removed next week which is in his back. He is in discomfort but not pain. Hes back at work but gets tired easily. His bladder is working well so far and the nerves are working! This doctor also usually does the sugery in four hours but the robot prolonged it. Since the robot only removed the objects and he didnt use it to attach anything I bout the scar tissue in the ureter is a result of it. The clot and abscess sure could be however. Next time your at your doctors ask him what complications arise when using the robot. I sure hope they are inconveinces and not deadly. Dad is doing ok but the next week tube out and then two weeks later gets the stent in his kidney out. Hes been a trooper becasue this has not been easy for him. The good news was that the cancer was superficial and didnt even enter the lamina propria and that having his prostate out could have saved him from an undiagnosed cancer. deb Heart Thu, 12 Jan 2006 00:00:00 GMT Hi Deb, How old is your Dad? why do you think the Dr. used the robot if it takes twice as long? what is the doctors name? do you know what the tube is for? remind me when he had his sugery. one more question if his cancer was superficial why did they take his bladder? I will ask my doctor about the robot. Tim Penguin Fri, 13 Jan 2006 00:00:00 GMT dad is 65 years old. the doctor is at the university of chicago. the robot was only to take an extra hour per our converstion. they took out his bladder because he had grade 3 tumor before bcg and abnormal cells fish test after the bcg treatments. the dr. suspected he had CIS but when the bladder was taken out there was dysplasia all over which usually leads to cancer. i think the removal was a great call before it penetrated the wall but the robot perhaps wasnt. Heart Fri, 13 Jan 2006 00:00:00 GMT I was first dx with three grade 3 tumors in 1994 had a turb and 6 weeks of bcg I kept my bladder for almost 12 years before it had to go.Don't get me wrong I talk to many people that held on to their bladders longer than they should have and it got outside but they all had invasive cancer I have never heard of a doctor taking a bladder that had a superficial tumor but in his case with them finding the prostate cancer I quess it was a good thing and just because I have never heard of it does not mean it has never happened before. I will ask my dr. if he would have taken it. Tim Penguin Fri, 13 Jan 2006 00:00:00 GMT my main question to the doc is about the robot and why he doesnt use it on rcs. the bladder removal i believe was a coreect decision in light of the damaged chromosones on the fish test, urine still showing abnormal cells, and turbt with a grade three tumor. after the bcg dad bladder was very inflamed and the doctor thought it was due to CIS. Dysplasia is very dangerous to leave in the bladder becasue it is precancarious and all over his bladder. the doc was very concerned with a grade three it could penetrate to other organs without us knowing. thanks for your concern. deb Heart Fri, 13 Jan 2006 00:00:00 GMT Hi Deb, I have heard back from a few people that had CIS and non invasive tumors who had a RC so it is not as unheard of as I thought to treat with an RC. I will ask my dr. about the robot but I won't see him for six months I keep a list of questions for him so I don't forget anything and this will be at the top of that list. give your dad my best wishes. Tim Penguin Fri, 13 Jan 2006 00:00:00 GMT thank you so much for your toughtfulness. this deisease has been brutal to many and i hope and pray that they find a crue some time soon. Deb Heart Fri, 13 Jan 2006 00:00:00 GMT