CancerCompass message board discussion started by Heart on 9/28/2005 http://www.cancercompass.com/message-board/message/all,3066,0.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/ My dad is about to have his bladder and prostate out. he has grade 3 bladder cancer and they are taking the prostate for preventative measures. He will have a new bladder made out of his intestines. Could anyone discuss the recovery process and what to expect in the days, weeks and months ahead? Any informaiton would be greatly appreciated. They dont beiliev that the cancer has spread but wont know unitl after the surgery. Thanks, Deb Heart Wed, 28 Sep 2005 00:00:00 GMT Hi Deb, I wanted to tell you that unfortunately, I am wondering the same things. My husband is getting ready to have his bladder & prostate removed and is also hoping to get the neo-bladder. I am anxious to hear what others have experienced so we will know what to expect. My husband is 28 years old & we have a 7 month old baby. I hope you get better responses, because I would feel more at ease if I knew what we will be dealing with as far as recovery. I hope we both get answers & that your Dad has a fast recovery as well. Stephanie Steph2005 Mon, 03 Oct 2005 00:00:00 GMT Hi, I had my bladder removed and a neobladder reconstructed. The rcuperation period is not easy. I was tired, scared and confused. I had my surgery at USC on April 29 2,004. At this point I have total daytime continence and some incontinence at night. It is a great thing though. It was worth doing. I was lucky in that the reconsttruction was possible and if your dad qualifies I definitely recomend doing it. If I can be of any help please contact me I'll help any way I can. Luis Skylid Mon, 10 Oct 2005 00:00:00 GMT Dear Stephanie, My dad has had is bladder and prostate out. Fortunately he was able to have the neo-bladder made for him. So far the recovery has been difficult but manageable. He was in the hospital for eigt days and needed it. We had a family member stay with him every night of his hospital stay which I strongly recommend. There were many times that errors could have occured or he needed something ice chips etc. He is home now and I think the fear is worse than the pain for dad and hes very tired. I hope all goes well for your husband. My dad had cancer in his prostate when they took it out but not in his lymph nodes or uterus. Heart Tue, 18 Oct 2005 00:00:00 GMT Hi Deb, My husband had his bladder & prostate removed in March of this year. It has been a very rough 6 1/2 months for him and me. He is doing a lot better now but he did lose about 50 pounds in just 3 months. They made his new bladder out of his intestine. He was back in the hospital within 3 weeks after he got out with an infection. He has had several urinary track infections since the surgery. He has been hospitalized a total of 4 times since the surgery. He contracted an staff infection and it took along time for them to find it. He got down to 128 pounds and nearly died. But a infectious disease dr found the staff infection and treated it and he is fine except for another urinary track infection. He is now back to work and up to 146 pounds and hopefully on the road to recovery. we have both said if he had it to do over he would not have gotten the neo bladder. He would have just got the bag. Be sure to read everything you can about the side effects of the surgery. There are things we know now that we didn't before the surgery about the neo bladder surgery. And one more thing is my husband now kicks one leg out and stumbles a little from the surgery. May God be with you and your family during this trying time. If you have anymore questions feel free to get back with me And just because my husband had it so bad doesn't mean everyone would. Cheddar2221 Wed, 19 Oct 2005 00:00:00 GMT thank you for the information. dad did go with the neobladder and i will tell him to watch for infections. where was his sugery performed? Ours was at the University Of Chicago. what were the symptoms of his staff infection? Deb Heart Wed, 19 Oct 2005 00:00:00 GMT He had his surgery in Springfield Illinois. When did your dad have his surgery? As you probably already know there is no feeling in the new bladder so it makes it hard to tell when there is an infection. But Tom was not eating and had no appetite, his blood pressure was also low and he didn't want to get out of bed. The one thing that I noticed was his blood pressure seems to get pretty low everytime he has has an infection. But this time he had some burning so he knew he had one. I hope your dad is doing well as many do when they have the surgery. Tom was just one of those that didn't do so well. But they did get the cancer . Now they have found a spot on his kidney and we are waiting for a cat scan to tell if it is anything to worry about. Let me know how your dad is doing please. Cheddar2221 Wed, 19 Oct 2005 00:00:00 GMT I am sorry but I didn't tell you what the symtoms of the staff infection were. His blood pressure was low, he didn't want to eat, and he had very loose stools. It is very hard to find out if they have a staff infection, but staff infections do kill people everyday. So if your dad has any problems and he doesn't seem like you think he should be sure and have things checked out. I thank God everyday that we got Tom to the hospital in time. Cheddar2221 Wed, 19 Oct 2005 00:00:00 GMT Almost two weeks after sugery and dad is still very weak with very low blood pressure. I will mention making sure there isnt an infection. Thanks for that information. His biopsies are clean, but as you know things can change so we are praying for the best. his lymph noses are clean but i havent heard wheter the doctor is going to still recommend chemo. did your husband have chemo? Let me know how his kidney is please. Deb Heart Thu, 20 Oct 2005 00:00:00 GMT Hi, I find your story interesting. A lady called me before my husband's sugrery. Told us about the great doctor that did our surgery. she is fine with the internal bladder and has to cather her urine out. She teaches school and does this with an internal bladder. Our doctor compared the external bladder with a very dependable car and the internal bladder with a super impotrted modle that can need extra care. My husband took the outside bladder and was back to work in 6 weeks. He is doing well on his health tool What a blessing it is to write that we are through all this fear. I wanted him to have an internal but after reading your stories, the outside one looks just fine. We are doing well with convetex wafers and glue. We had a little trouble getting the best wafer for him. The companies send samples as we requested and they ask questins as to what he needed. rose Rose 123 Wed, 26 Oct 2005 00:00:00 GMT Well, two weeks out and dad ended up in the hospital with a high fever that came from an abcess in his belly. The day they were going to send him home we noticed his legs were swelling. WHy? He now developed a blood clot probably due to the abcess putting pressure in that area. Finally, today after an additional wekk of hell we are going home! Heart Thu, 27 Oct 2005 00:00:00 GMT Hi Heart, Sorry, you are doing this the hard way. I am so sorry that he had to experience all of that. Is he wearing support socks? Is he on comudin? In time and with luck, he can get off all this. i hope the rest of the healing will be easier. Is he on nurtional supplements? Vitamne c and zinc help with healing. I hope he is eatting well and not in depression. You too. Can you find some good lavendar and smell once in a while, It will help your moods. rose Rose 123 Thu, 27 Oct 2005 00:00:00 GMT Thank you for the suggestion. Dad is still very weak and I believe depressed. He is eating, but his blood levels are still not 100%. He gets stomache pains/ gas pains before he has a bowel movement which all have been loose. He is still incontient and this is very diifcult for him as well. I will try the lavendar oil and see if that makes a difference. He is eight weeks out and still doesnt look right to me. We are praying for his full recovery soon. Deb Heart Tue, 15 Nov 2005 00:00:00 GMT How is your husband doing now? My dad is still having a difficult time ten weeks post op. Most others seem to be fine in four weeks without any complications. We like yourself werent so lucky. Is your husband back to normal? Love and prayers, Deb Heart Tue, 15 Nov 2005 00:00:00 GMT How is your husband doing? I know having three children that child rearing is difficult. Im sorry that you are having to do so in such difficult and stressful times. Make sure that you take time for yourelf and take those much needed bubble bathes! Deb Heart Tue, 15 Nov 2005 00:00:00 GMT Hi Deb My husband is getting better, he is up to 159 now but now something showed on a ultra sound and cat scan. He has some soft tissue in front of the new bladder. He is feeling really good now but we are to find out later this week what they are going to be doing. The blood Dr. says they will probably have to cut him open to find out what it is and his Kidneys are not working like they are suppose to so he is still on medicine for anemia due to that. He never had any of these problems until he got that neo bladder. If we had it to do over, he would have gotten the bad instead. I am sorry to hear that your dad is having a rough time. I pray that he will get well soon. Please keep me posted Sherry Cheddar2221 Tue, 15 Nov 2005 00:00:00 GMT Please let me know what the doctors are saying My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. Please write to me directly. I hope that he doesnt have to be opened up again! Deb Heart Tue, 15 Nov 2005 00:00:00 GMT By the way, how long did toms sugery take and what university was it performed at. My dads was done at the Univ of CHicago and it took over 7 hours. Deb Heart Tue, 15 Nov 2005 00:00:00 GMT Toms surgery was done at St Johns in Sringfield Illinois and he was in Surgery for 9 hours. Cheddar2221 Wed, 16 Nov 2005 00:00:00 GMT Hi, Roger had so many antibiotics pumped into him, his bowels were loose for ever. We have confirmation form a doctor that he needed accidoplphis tablets or lots of like yoghert. Some fold call this probiotics. He took a bunch but is finally better. Rose Rose 123 Wed, 16 Nov 2005 00:00:00 GMT Hi, roger's surgery was about 6 hours. It was longer in recovery. He never comes out of anesetic easy. For what you all have written, I am so thankful that whe choose the external bladder. However, I hear that when you do get it under control, you will be in good shape too. Rose Rose 123 Wed, 16 Nov 2005 00:00:00 GMT Tom has to take accidopilus also. He still has bouts with loose bowels but it is alot better since he is taking that Cheddar2221 Wed, 16 Nov 2005 00:00:00 GMT Deb I hope your dad is coming along better, it does take awhile. Tom did get depressed and thought he was going to die. Your dad had a very serious operation and it does take time, more for some like Tom and apparently your dad as well. How old is your Dad? It took months before Tom was dry during the day, so tell your dad not to give up, it does take time. Tom says he is pretty dry now during the day but still wet at night. Cheddar2221 Wed, 16 Nov 2005 00:00:00 GMT Deb I wish there was a way that we could email each other. Its always nice to have someone that can support you. Then I could have given you my phone number if you or or dad had anymore questions. But I don't know how we can exchange emails since we are not able to do that here. I am so sorry Cheddar2221 Wed, 16 Nov 2005 00:00:00 GMT Dad is 65 years old. he is having stomach aches still with loose bowels and low grade 99.4 fevers. His doctor has not been helpful in letting us know what to expect and what is a normal recovery. I believe that we can write our emails on the bladder cancer web cafe. This is another very god site if you are not familar with it. Heart Wed, 16 Nov 2005 00:00:00 GMT Did your husband find out about the mass in front of his bladder? How is he doing? It seems that your husband and my father are two people that just cant get a break from complications fom sugery. most people seem to do very well without many complications. dad is on his way to recovery we hope. the doctors are taking out the tube in his back next week. its been a tough road for us as well with four hospital stays also. i would love to chat with you more. please wrtie back. Deb Heart Thu, 12 Jan 2006 00:00:00 GMT how is your husband doing now? Deb Heart Thu, 12 Jan 2006 00:00:00 GMT I was wondering if you experienced any complications from the sugery since your operation? Heart Thu, 12 Jan 2006 00:00:00 GMT where did your husband have his sugery done? Heart Thu, 12 Jan 2006 00:00:00 GMT I was just going to mention that site to you. Do you go under heart there also? My name there is cheddar2221. Maybe we can connect there Cheddar2221 Thu, 12 Jan 2006 00:00:00 GMT They want to cut him open to see what the soft tissue is but as of right now he doesn't want to be cut open anymore. He goes the 31st to get a cystoscopic done and maybe they will know something then. We do know that his left kidney is not functioning right and I don't know what they are going to do about that. He has lost over 10 pounds in the last month and we don't know why. He is eating really good . It is really frightening. I hope I can get your email from the bladder cancer web cafe and we can email back & forth. I hope your dad is coming along better now. What was the date of his surgery Cheddar2221 Thu, 12 Jan 2006 00:00:00 GMT my email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. write me there. i hate that you are going through all of this. Heart Thu, 12 Jan 2006 00:00:00 GMT my dad had sugery in early october. he has to have the tube in his back out in two weeks and then the stent in his kidney removed two weeks after that. hopefully THEN he will start to recover. Heart Thu, 12 Jan 2006 00:00:00 GMT well my name is donald and i had the sug. two years ago i had colon and bladder cancer both .part of my colon was remove and bladder was taking out and replace with part of my inten.im doing good everything is good ,the set back is it took me a year to get though all this but now im at 215 lbs, from 145 lbs . and what help me the most was my faith in the lord , my recovery was a lot faster then some ,of the people that went though the same thing i did .and i was at that time 49 . by the stage 4 .im in remission now for two years thank the lord. Dbarns Wed, 09 May 2007 00:00:00 GMT