CancerCompass message board discussion started by Steph2005 on 11/17/2006 http://www.cancercompass.com/message-board/message/all,7847,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, My husband was diagnosed August of 2005 with bladder cancer. He was 28 years old at the time. He received 4 rounds of chemotherapy before undergoing surgery in January of 2006 to remove his bladder. He now has a neobladder, a bladder created out of 16 inches of his small intestines. He had a nerve sparing operation to allow him to have sexual function. He is now cancer free and our lives are back to normal. It is almost as if we never went through the horrible experience. I found this website to be a great source of information & comfort throughout our journey through cancer. If anyone would like any information about my husband's experience, I would be happy to share. Best of luck to all that are fighting this terrible disease. Stephanie Steph2005 Fri, 17 Nov 2006 00:00:00 GMT step2005, can you tell me what hospital and town,surgen, did they take the prostate, can he pee normally ,how often, recovery time and trouble, incontinent, type of chemo used, stage and grade and exact type of bladder cancer. i fear i will need the same as your husband thanks for the info. skowe Skowe Sun, 26 Nov 2006 00:00:00 GMT skowe, My husband had his surgery at Indiana University Hospital by Dr. Michael Koch, chairman of urology. I can't remember the exact type of cancer he had (my files are at home, I'm at work). It was stage 3 of 3. They did take his prostate. That was an operating room decision. We are glad they took it because when the pathology report came back, we learned the prostate was cancerous. He can pee normally now, although he sits most of the time rather than standing. He doesn't urinate any more frequently than he did before, however it takes him longer to empty his bladder. He has 100% daytime control. Nigh time is still a struggle. He wears depends at night in case he doesn't wake up. My husband received 4 rounds of chemo. Gemsar & cisplatin (not sure if they are spelled correctly). He received chemo once a week for 3 weeks then had a week off. Chemo was very difficult on him physically. The immediate days after the treatment left him very nauseas and tired. By day three he was feeling better & back at work. He continued to work part time throughout chemo. He had chemo for 4 months. When chemo was over, he had 1 month "off" before his surgery. This was to allow for his body to rest and rebuild white blood cell count & gain a little weight if possible. We traveled from Louisville, KY to Indianapolis, IN for surgery. The operation took a little less than 4 hours. He was in the hospital for 5 days. He came home with a cathedar that remained for 2 weeks. He went back to work part time 5 weeks post-op. I will be happy to give you more detailed recovery info if you are interested. If you don't mind me asking, how old are you? What hospitals/surgeons are you considering? I hope I answered all of your questions. If you have any more, please feel free to ask. I found this site to be a great deal of comfort & information throughout our experience. I think the most important thing you can do if you need a neobladder is to get a great surgeon. Someone that is very experienced. I think Dr. Koch's experience allowed my husband to have a relatively fast recovery and normal quality of life post-op. Again, feel free to ask anything else. Best of luck to you. Stephanie Steph2005 Mon, 27 Nov 2006 00:00:00 GMT steph 2005, i am 57. i was diagnosed jan 06 with bladder cancer, transitional cell carcenoma and a little patch of carcinoma in situ, i had a tur then followed with a second tur in march. then i had a 6week round of bcg treatments. then a 3ird tur in july with a mitomycin wash followed by 6 weeks of bcg and interfuron. i had to skip every other week the last 3 however due to bad reaction. now i will go for a scope to see if we had any success on dec 6. i am ti stage and grade 3. i still try to beat this but my time is running out. i can't let this go to stage 2 or get into the muscle or it might be too late i am told. i am afraid of the bladder and prostate removal as i have read so much negative about it. i have talked to a top surgon in my area ,albany ny, but don't trust the nerve sparing part of the whole thing. he tol me a6to8 hour operation and a 90% chance of the neo working by itself without me having to drain it and possibly irragate it to keep it working. also i fear with no prostate i will not be able to have sex any more nornally. and incontinance is also scarey. tell me more of the nerve responds for your husband and why does't the 2 sphinctor valves in the urethra keep your husband from wetting at nite? thanks skowe Skowe Sun, 03 Dec 2006 00:00:00 GMT Hi skowe, I hope you get good results from your scope on December 6. My husband was also afraid of having his bladder & prostate (especially the prostate since he was only 28 at the time.) removed. Please do not be afraid. You need to get rid of the cancer. If your bladder & prostate are full of cancer, you must get rid of them. It can save your life. My husband's quality of life now is very similar to what it was pre-cancer. You have every reason to be wary of the nerve sparing because it is different for every person and every person will have different results. My husband's surgeon was only able to spare nerves on one side. Unfortunately, it has not worked completely, but that is not the end of a sex life. He has had much success with Viagra and penile injections. We are not discouraged, as Dr. Koch stated that sometimes a nerve sparing operation takes up to 2 years to work, so there is still hope. For some people the nerve sparing works immediately. My husband did have chemo before surgery, which could play a role in his not working yet. It takes a long time for that poison to get out of your system. My husband has never had to irrigate his neobladder to empty it, although we have self-catheters at home if something should happen & he would need to. I am not sure why his sphincter muscles do not keep him from wetting at night. Maybe they are not strong enough yet?? I know his doctor has recommended some things he can do to keep from wetting (stop drinking 3 hours before bed, set an alarm to wake up in the night, self-catheter before bed) but he doesn't wet through every night & I guess it just doesn't bother him enough for him to do what the doctor suggests. Don't get me wrong, he follows doctor's orders, but if he feels like having something to drink before bed every now & then, he does. I would like to invite you to go to the second page of this message board. There is a thread titled "16 days post op rc." There are several messages from a man named Tim and his experiences as well as ours. I learned a great deal from following others experiences. That thread follows my husband's entire ordeal. I also wonder if you have considered other surgeons. I think my husbands quick recovery is directly related to the expertise of Dr. Koch. We live in Louisville, KY but traveled to Indianapolis, IN for the surgery. Dr. Koch has preformed hundreds of these surgeries and I definitely feel that a well- qualified surgeon is worth the trip. Just something to consider. Someone told me if your surgeon does not perform at least 50 per year, you should find someone with more experience. My husband is rapidly approaching the one-year anniversary of his surgery and this time last year I was a mess. I was worried sick and when I look back at that time now, it seems as if didn't even happen. Chemotherapy was definitely much harder on my husband than the surgery. And while he does have to use Viagra and he occasionally wakes up wet, he is cancer free. For us, those minor inconveniences are a small price to pay for a normal quality of life that is free of cancer. Please let me know if you have any additional questions. I would be happy to answer anything. Please let me know how your scope goes. Best of luck to you as you fight this terrible disease. Stephanie Steph2005 Mon, 04 Dec 2006 00:00:00 GMT Hi, My father had this same surgery one year ago.  He had his blaader and prostate out .  He was much like yourself sage ti with grade 3.  He tried bcg and the cis got worse or didnt improve.  he had his bladder out via a robot including his prostate.  the sugery took 7 hours.  he did have a lot of complications but due to the long sugery i believe which is why i wouldnt recommend the robot for the bladder only the prostate.  he also ended up with prostate cancer so it was good he took his out.  its not an option as i see it.  the prostate is like the bladder with the inner lining.  with cis especially it could travel and end up in the prostate if not removed.  we had our sugery at the univ of chicago.  dad developed an abcess, blot clot and blocked ureter during the year.  all were additional stays in the hospitals and complications.  you are 25% likely to have one of these but only 3% likely to get them all.  It was a long grueling year I wont kid you but hes alive and went ice skating with us last weekend.  As he says its life and that beats the alternative.  Once you are over the shock i believe you too will reside yoursefl to this.  he is fully continent during the day and about 90% at night.  The first three months are tuff but baring any complications most are up and out in a few months.  I beleive that sexually hes ok but its a subject we dont discuss.  I hope that you act quickly but those who have not are very sorry when it speads and sugery is no longer an option.  This can give you a 90% ten year survial rate and as cancer goes those are pretty good odds.  My thoughts are with you during this difficult time in your life,Deb Heart Fri, 08 Dec 2006 00:00:00 GMT steph, i am beginning to think i know you. i had the scope and the results although preliminary as you know were no papillary tummors present as were before. this isonly half good news. i have transional cell carcenoma as well as carsenoma in situ. the first is the turmor that is like a papillary  that hangs from the wall. the second is a field of flat cells that don't protrude but lay flat on the wall of the bladder. these would be detected by biopsiy.  i will have a fish or urovision test of the urine next to see if any floating cells are cancerous. if this comes back negative in another week i will maybe wait another 2 months. this due to the information i have learned that the bcg treatments keep working for 4 to 6 months by theory, after that i may decide to hav the 3 month bcg again. i may not have elect to go back in the hospital for the biopsy at this time until the bcg has had it's full time to work with the imune system. thanks for asking about me ,skowe Skowe Sat, 09 Dec 2006 00:00:00 GMT I have a father have grade 3 bladder cancer he is 64 yrs old have other health problems why is they doing bcg when its say that its for low grade cancer tell me what should we do and oh yes he have clogs in the legs have heart problems high chros and other things going on can you help please share with me what you know about this thing.  thanks and may the good Lord bless you. Sheshelove Tue, 27 Feb 2007 00:00:00 GMT what stage is your father in? ta,t1,t2,t3 are examples. also does he have carcenoma in situ, papillary tumors? after a tur he definitely should start 6 weeks of bcg once a week. then wait 3wks and check with scope and urovision if clear. ir not yry 6 weeks of bcg/interfuron once a week. then 3wks wait then scope. if not clear inbetween each treatment he would need another tur possibly if anything is scope visible. also biopsy while thy are in there and always ask for a mitimycin wash after each tur. skowe Skowe Mon, 19 Mar 2007 00:00:00 GMT