CancerCompass message board discussion started by Daisy Bear on 1/12/2007 http://www.cancercompass.com/message-board/message/all,8801,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ It is with out a doubt the most difficult time in life! I have had one surgery to remove belly button and half of bladder. It has only been five months since and I had 2 CT scans  one in Nov. and one in Jan.and they are showing  thickening at the site of the surgery. I have 3 boys which makes this decision part easy , so I can contuine to be a mother. I am only 35 and wonder how my life will change with a neo bladder. I have been told this is such a rare cancer that the only cure would be to have the whole bladder removed at this point. I also had lymph node involvement and they will get as much of those as they can along with all female parts. I hope someone would be willing to respond back! I If feel so alone right now. Daisy Bear Fri, 12 Jan 2007 00:00:00 GMT  On 1/12/2007 Daisy Bear wrote:It is with out a doubt the most difficult time in life! I have had one surgery to remove belly button and half of bladder. It has only been five months since and I had 2 CT scans  one in Nov. and one in Jan.and they are showing  thickening at the site of the surgery. I have 3 boys which makes this decision part easy , so I can contuine to be a mother. I am only 35 and wonder how my life will change with a neo bladder. I have been told this is such a rare cancer that the only cure would be to have the whole bladder removed at this point. I also had lymph node involvement and they will get as much of those as they can along with all female parts. I hope someone would be willing to respond back! I If feel so alone right now.I had my bladder removed in 2004, a total RC. I also know people, bothe male and female who have had them removed also. In all cases the result does not affect your quality of life. It works well. You are goint to have to learn how to urinate and control your bladder. You will also in all probability have some leakage at night when you sleep, but nothing that is not manageable. I had my surgery at USC Norris cancer center. Whatever you do make sure you do it (if you need it) at a place that does a lot of them and where the doctors involved in the process are proficient at it.It is going on almost 3 years for me and i do not regret my decission. My life continues as before with very minor changes.If you need any more informatuon from me, I'll check the postings.Luis Skylid Mon, 22 Jan 2007 00:00:00 GMT  On 1/22/2007 Skylid wrote: On 1/12/2007 Daisy Bear wrote:It is with out a doubt the most difficult time in life! I have had one surgery to remove belly button and half of bladder. It has only been five months since and I had 2 CT scans  one in Nov. and one in Jan.and they are showing  thickening at the site of the surgery. I have 3 boys which makes this decision part easy , so I can contuine to be a mother. I am only 35 and wonder how my life will change with a neo bladder. I have been told this is such a rare cancer that the only cure would be to have the whole bladder removed at this point. I also had lymph node involvement and they will get as much of those as they can along with all female parts. I hope someone would be willing to respond back! I If feel so alone right now.I had my bladder removed in 2004, a total RC. I also know people, bothe male and female who have had them removed also. In all cases the result does not affect your quality of life. It works well. You are goint to have to learn how to urinate and control your bladder. You will also in all probability have some leakage at night when you sleep, but nothing that is not manageable. I had my surgery at USC Norris cancer center. Whatever you do make sure you do it (if you need it) at a place that does a lot of them and where the doctors involved in the process are proficient at it.It is going on almost 3 years for me and i do not regret my decission. My life continues as before with very minor changes.If you need any more informatuon from me, I'll check the postings.LuisThankThank-you for giving me such positive hope for a normal life!! I wondered why you had a RC ? also do you know of any questions I should ask my doctor about the surgery? I see him tomorrow and would feel better if I had questions to but my mind at ease and feel confident about this surgery. I go to the top cancer center in Canada and I am not too concerned about my doctors experiences but I will still ask him. Hope to hear from you very soon.  Daisy Bear Tue, 23 Jan 2007 00:00:00 GMT I had bladder cancer.My surgery took about 6 1/2 to 7 hours with the reconstruction of the neobladder. You will loose weight but don't worry it comes back as you get stronger. I was told that it takes about 1 month for every hour of surgery to get back to normal and believe me it will. You will not be huingry after the surgery. make sure you drink plenty of liquids. Ask what type or pouch are they using. At USC they have the T and the koch. Apparently they both work well. I have the Koch and I know someone that has the T. If you are a female I know a lady in Detroit that had the surgery. She is doing great and is very happy. As a male they also take the prostate as a female I believe they remove the female organs you better ask.Also if you are a male they can do a peniel inplant that works very well. You should ask.If you want to know anything else let me know. Hope all turns out OK for you. There is light at the end of the tunnel.Luis   Skylid Tue, 23 Jan 2007 00:00:00 GMT thank-you for taking the time to respond back to me,you have helped me feel more at ease with looling into the future. I will hope to keep in touch and ask for advise from time to time. Thanks and take care   Daisy Bear Tue, 23 Jan 2007 00:00:00 GMT Stay in touch. Skylid Tue, 23 Jan 2007 00:00:00 GMT I will keep in touch as much as I can, we are just leaving on a mini vacation with our kids for a few days. I have been so busy with doc appointments and friends trying to keep me busy with shopping and lunch before you know it it will be the day of surgery for me!! I had to tell my oldest son (he is turning 13 in feb.) he was in shock!! he said" MOM" can people live with out their bladder? I was so scared for him, to think he has to worry about losing his mom. Thats when I told him that people can live happy and heathly lives with out their bladders! I am glad I told him because it really gave me that kick in the ass that I need to get this thing out and get on with my life as mom! thanks for being there!keep in touchdasiy bear Daisy Bear Mon, 29 Jan 2007 00:00:00 GMT Hi, Daisy Bear: I have had prostate cancer in 2005 and have had no trouble with it siince then.  A little over a year ago, I developed bladder cancer, and the doctor removed all of my bladder.  Now, I have a urosomy and wear an external pouch.  The pouches last anywhere from a day to 5 days, and then I have to change it for a new one.   No-one can tell that I wear one. so it really isn't a problem.  I keep a whole change of clothing (pants, shirt, & underwear) alonf with a new bag and 2 washcloths in a duffel at work just in case I have a problem and the bag leaks all over the place.  I also have changed towearing dark clothing so if I have an accident, it doesn't show and I can go fix it without everyone know what I'm doing.  My wife ahas had ovafian cancer twice, and she has a colostomy, whi h requires that she wear an external bag as well.  The point of tis missive is that there are devices out there to takecare of your needs if you decide to go for a total bladder removal and they are very good.Just as an aside, I always want to know what my doctors want to do to me, so I generally get on the internet and get lots of information alout what they want to do.  For both my  cancers, I filled 3 to 4 11/2" ring binders with internet info before I let the doctor do his thing.  I knew exactly what he was going to do, and I also knew all the side effects so he couldn't surpprise me with anything afterwards.  I'm a firm belliever in getting as much information about what's going to happen as possible.  If you read a medical type article and don't understand it, take it to your doctor amd make him/her explain it fully until you really understand what it's all about.  Remember, it's your body and no one should have to tell you what they are going to do to it, without you knowing all the ramifications of their proposed procedures.  Question them fully until you really understand what's likely to happen in the first month afterwards, the first year after and at the 5 year mark, them have them prognosticate the reat of your life.The last thing you have to do is believe that you willl be really well after whatever the procedure is.  Some people say "Keep the faith Baby" and I find that that attitude is a winner.  Believe thar you will be well, and just watch how well you respond.  Personally, I won't let myself be sick, but I still have had a couple of slips where I succumbed to cancer, but overall I believe myself to be a well person.  You can do it too.  Think positively.Best wishes,Sir Brian the Lion. Sir Brian The Lion Tue, 13 Feb 2007 00:00:00 GMT hello my dad just learned he has to have his bladder out and he is upset with this. he just keeps saying if he could have a normal life.  if he heard from someone that he will then i think he would be ok. i dont want him to give up. anything you could tell me so i can tell him about it and how your life is and do you live a normal life would help thank you so much my email is daddysgirlmunk@yahoo.com thank you again Sandy07 Thu, 28 Jun 2007 00:00:00 GMT  On 6/28/2007 Sandy07 wrote:hello my dad just learned he has to have his bladder out and he is upset with this. he just keeps saying if he could have a normal life.  if he heard from someone that he will then i think he would be ok. i dont want him to give up. anything you could tell me so i can tell him about it and how your life is and do you live a normal life would help thank you so much my email is daddysgirlmunk@yahoo.com thank you againI had my bladder removed April 2004. I live a complete live. The quality of life is excellent. If you are lucky like I was and can have a neobladder reconstruction you don't have to use the bag. My surgery was at USC in California. It took about 7 hours. Lost a lot of weight (but gained it all back). I was weak for a while and it took me about 6 months to get back to normal. I do everything, no limitations of any kind. I go to ther gym 3/4 days a week, and lift weights, no problem at all. Of course nobody wants to have the surgery and had their bladder removed, I struggled with the decission and so did my family. In all honesty though the results have been excellent. od doing it may have resulted in cancer spreading which would have been much worst.Tell your dad that there is light. Thank G_D medicine has found a way not only to solve the problem but also to do it in a manner that results in an excellent quality of life.Luis Skylid Thu, 28 Jun 2007 00:00:00 GMT