CancerCompass message board discussion started by Donald p. on 2/14/2006 http://www.cancercompass.com/message-board/message/all,4500,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ To Stephanie: Many thanks for taking the time to respond to my Message board info. I have been reading very much about alternative Cancer treatments, that do Not make me so sick, with burning stomach type irritation, and plugging of the ears, etc. My cancer is: small cell carcinoma of the Bladder, and it invaded the muscle, that surrounds the bladder, and stopped at the fat tissue, touching the cuscle. Because it invaded the "muscle", I was told I would need 5 "chemo" rounds (consisting of 3 days each, with about 15 days rest between the rounds. I have taken 2 rounds, and got sick, and fatiged. My one inch tumor was removed 12-1-05, and I took chemo on 12-27 thru 12-29, and 1-17 thru 1-19 , 2006. My chemo treatment was Also Cisplatin, and also included v16, Etopisine. Did your husband's tumor invade the muscle just outside the Bladder, or was it confined "within" the bladder itself?? My Urologist thinks the safe path is to remove the bladder , as does the well know Cancer Center in Houston, Texas, but I don't like that route either, but might have to go that way, in the end. Does the neobladder function the same as the Old badder, or does a "bag" need to be worn? Again, thanks for the Reply to "Bladder Cancer" on the Message Board, it has been the only one I received. I hope I receive some more, also. Donald p. Tue, 14 Feb 2006 00:00:00 GMT Hi Donald, I had bladder cancer for 12 years before a tumor popped up that was muscle invasive and trying to get outside the bladder. I had my radical cystectomy on 11/01/05 with a neobladder, the neobladder works like the original bladder they take a piece of intestine and build a new bladder out of it hook it up just like the old one and away you go. Even if you are not a candidate for the neo bladder it sounds like your present bladder needs to go if the cancer gets outside the bladder and into other areas of your body your chances of survival will drop dramaticly it needs to go while you have it contained in the bladder. I never needed chemo and that is why I did not respond until now but from what I hear from people like Stephanie the chemo is much worst than the surgery to remove the bladder. I am 3 months post op now and pretty much back to normal if not a little better if your doctors say it has to go then let them take the cancerous so and so out and get on with your life. I am sorry if this sounds a little rude but I can't understand the reason some people want to keep their bladder and chance letting the cancer spread to other areas. Look at it as if you have your enemy conered and he is trying to dig his way out you have a team that can stop him but you tell them no so he gets away not a good idea. If you have any questions please ask also go to www.acor.com and go to the bladder cancer cafe there are 500-600 bladder cancer patients at all stages of the disease that can give you great advice also go there and look up "tales from the trenches" Tim RC 11/01/05 Penguin Wed, 15 Feb 2006 00:00:00 GMT try www.acor.org Tim Penguin Wed, 15 Feb 2006 00:00:00 GMT Hi Donald, My husband's cancer did go into the first layer of the muscle wall. Fortunately, the chemo worked to stop the cancer and he is now cancer free. As I said before, the chemotherapy was by far the worst part of this horrible experience. My husband was so tired, weak and nauseous for a good majority of the treatment. He lost a lot of weight. As Tim (Penguin) stated, with the neobladder you pee just as you always have; no bag or anything. Some people are not candidates for neobladder, for my husband, it was an operating room decision. If my husband had not had the chemotherapy, it is highly likely that he would not have been able to get the neobladder. I would talk to your doctor about it. Also, if you choose to have the bladder removed, make sure you get a good surgeon. We live in Louisville, KY and the doctors here in our town were not even familiar with neobladders; the only option they had for my husband was a bag. We traveled to Indianapolis, IN and my husband was treated by a doctor that has been performing this operation for over 15 years. Thanks to the second opinion we received in Indianapolis, in a couple of months my husbands lifestyle should be as good as it was (maybe better!) pre-cancer. If you have any additional questions, please don't hesitate to ask. I learned so much here after my husbands diagnosis. Knowing that other people overcame this horrible disease was a huge inspiration to us. Good luck. Steph Steph2005 Wed, 15 Feb 2006 00:00:00 GMT Hi Penguin: Many thanks for the reply and the info on Bladder Cafe. I am working on it.I guess my problem is that the Cancer (small cell carcinoma of the Bladder, got outside the bladder, and into the Muscle that lines the outside of the bladder. The Urologist the Oncologist, said that they have No reliable test that shows whether or Not the cancer cells have been killed in my entire body. My Urologist said that even a biopsy (spelling ?)( of the area where the Tumor was removed (2 and 1/2 months ago), that showed NO cancer cells, would Not mean that I was free of caner cells in another part of my body , that is why they want to remove the bladder(even though they may find later, that the bladder was cancer cell Free).The Oncologist said that if No bladder removable, I should receive the Radiation along with more Chemo, even though they cannot determine that I have cancer cells in part of my body, other than the bladder. I feel this is "Overkill", and appreciate you responce to my message board. If anyone else "OUT THERE", has a comment, I sure would like to hear from them. Thanks again, Donald P. Donald P. Donald p. Sat, 18 Feb 2006 00:00:00 GMT Hi Steph 2005 (Stephanie): Many thanks for you last message. Would you please read my reply to "Penguin of 2-18-06, it would be about the same info that I would tell you about in this message. Thanks. My Dr. does not do the "neobladder", and could you tell me the name of the Medical Center in Indianapolois, IN, that did the "neobladder"?? Hope to hear from you. Donald P. Donald p. Sat, 18 Feb 2006 00:00:00 GMT Donald, If you have muscle invasive bladder cancer you only have two options one is to have it removed the second is to go through raditation/chemo. It is possible that they got it all 2.5 months ago the problem is invasive bladder cancer has a very high rate of recurrence and also has the abilty to get outside the bladder and into other organs this is why they want to take an aggressive approach. I am not that familiar with small cell carcinoma as mine was high grade TCC a much more common variety.Do you have a copy of your path report? and what does it say? You might want to get a second opinion it never hurts. I am a big advocate of bladder removal as it lets them get in there and do pathology on other organs that surround the bladder and gives a better picture of whats really going on. Tim Penguin Sun, 19 Feb 2006 00:00:00 GMT Hi Penguin: Thanks for the additional info. What you said was about what the Dr. Said. My Oncologist called the Andereson Center, In Houston, Texas, and that is where "he" got his "Opinion of my case". The problem with removing the Bladder, is that they "also" remove the Prostate, and the uretha...I would not be a happy camper with that. Have you done any reading on the Therapies used by Naturopathic Doctors ?? I discussed my cancer with a Naturophic Dr. Feb 16, 2006, and he said that his NATURAL therapy would remove the foods that "feed the cancer", and would build up my immune system, to help kill the cancer cells. Also, are you aware of a Medical center, other than the Anderson Center, that could perform the procedure call "neobladder replacement.?? Thanks again, Donald P. Donald p. Sun, 19 Feb 2006 00:00:00 GMT Donald, First off you need to ask why they want to take your prostate and uretha . They did hollow out my prostate but I still have it and they didn't touch my uretha( except to unhook and rehook it to my new bladder ).They will take them if the cancer has spread to those areas but like it or not if that is the case they need to go. Have they run biopies on either one? I am very skeptical about the food doctor are you willing to risk your life with this guy? I would need to talk to at least 10 former bladder cancer patients and know the stage of their disease to even think of going down such a untested road.I think YOU really need to talk to a doctor that has a lot more experience with bladder cancer and I urge you to call my doctor at Vanderbilt here in Nashville he is one of the best in the country it will take you a while to get an appointment but he is worth the wait His name is Dr.Joseph Smith Chairman of the board of urology for Vanderbilt Medical center his number is 615-322-2880 in closing Donald you have a very serious form of bladder cancer that you cannot allow to get out of hand Please call Dr. Smith first thing Monday morning. Good luck Tim Penguin Sun, 19 Feb 2006 00:00:00 GMT Hi again Tim (Penguin) I sure do appreciate you taking time to pass on to me, the good information about your Bladder cancer. I will call Dr. Joseph Smith Monday 2-20-06.Can I tell him "Tim" recommended him? How long has it been since you had your new bladder done? I guess you also, live in Nashville , is that correct? In answer to your question, no, a biopsy was not done one the prostate and uretha, but a MIR was done, and it was Normal. The X-ray for chest was also, Normal. My bladdder tumor was removed 2.5 months ago, and 7 days ago, the MIR OF MY BLADDER was "Normal", but the Urologist said , even a Normal MIR of the bladder does Not rule out some remaining cancer in the bladder. My Ocologist wants to give me Radiation, but I don't want that. Also, with your "hollowed out" prostate, do you still a reasonable Sex Life?? Also, How long after the new bladder was put in, did you feel good, and felt like yourself? Tomorrow, Feb 20, 2006, I will have an MIR of my Kidney, to see if any cancer has moved to that part of my body, so as to get a good handle on just what my overall situation is. Sorry to bend your ear so much, but I am scared of this "cancer business", and much appreciate you telling me about your experience. Respectfully, Donald Briggs (Donald P.) Donald p. Sun, 19 Feb 2006 00:00:00 GMT Hi Donald, When you call ask for Sonia she is Dr.Smiths nurse tell her that Tim Ray asked you to call and yes I do live near nashville.As far as my sex life they did nerve sparing and although it took a couple of months I am now back to normal.My surgery was 11/01/05 I walk 4.5 miles a day six days a week. Recovery times vary, with me it was about 10 weeks before I felt pretty normal. Good luck and keep me posted Tim Penguin Mon, 20 Feb 2006 00:00:00 GMT Hi Tim (Penguin_) Many thanks for your reply of(today 2/20/06). Good to hear that a person's sex life, does not come to an end. My Urologist (in Rogers Arkansas) said my sex life would me "over", after the removal of my bladder. I will call as I said. I will keep you posted. Respectfully, Donald Briggs (Donald P.) Donald p. Mon, 20 Feb 2006 00:00:00 GMT Hi Donald, Dr. Michael Koch, the chairman of Urology at the Indiana University Hospital, operated on my husband. His office is in the Indiana Cancer Pavilion in Indianapolis, IN. The phone # is 317-274-7338 and his secretary is Sarah Jo. My husband's name is Shawn N., if you want to say that someone referred you. As I read, you have received some wonderful information from Tim (Penguin.) He was very informative to my husband & I as we began this process. The doctor that operated on Tim (Dr. Smith)and my husband's doctor (Dr. Koch) worked together in the past. My husband & I were going to travel to either Vandy or Indy (both pretty close to us here in Louisville, KY), we only went with Indy because we were able to get into Indy faster. Actually, we would have gone to Mars if we had to. You wrote to Tim that you were concerned that they would take your prostate and uretha...My husband & I found in our experience, that a doctor that doesn't do neobladders would have a hard time making that call. The doctors here in Louisville told my husband that they would take everything but the kitchen sink, when in fact, that was not the case after speaking with Dr. Koch. In the end, they did take Shawn's prostate (it had cancer), but that is NOT the case for everyone, nor is it the end of sex as you know it. I would definately encourage you to get a second opinion. There are new discoveries being made in cancer research everyday and my husband & I were not going to rest until we found a doctor that could answer all of our questions and give my husband a normal quality of life post - op. Dr. Koch povided us with that. My husband is only 28 & was also concerned about a normal sex life post-op. Dr. Koch assured us that there is sex after bladder cancer and/or prostate removal. My husband had his surgery on Jan 6, this past Friday marked 6 weeks since the surgery and he is already back to work and feeling relatively normal. He was in good shape prior to the surgery, except for the cancer. I hope you are able to get the answers you are looking for. I learned throughout the experience that knowledge is power. Research and ask questions. Don't be afraid to get a second opinion. Keep us updated and good luck. Stephanie Steph2005 Mon, 20 Feb 2006 00:00:00 GMT Hi Stephanie Thank you for your message of 2-20-06. Yes, you and Tim have given me some very valuable information, and I appreciate it greatly. In your message you spoke of "Vandy", what exactly does that mean?? I am going to ask Tim this, and I will ask you, about your husband's experience with it. I think that the streching of the muscle, surrounding the bladder, tell's the man that he needs to urinate. Question: With a neobladder, what "sensation", alerts the man that he should urinate? Many thanks, Donald (Donald P.) Donald p. Tue, 21 Feb 2006 00:00:00 GMT Hi Donald, "Vandy" is Vanderbilt University Hospital. About your sensation question...Tim will be able to expain it better I am sure, but my husband has said it feels more like pressure. He has also stated he has pain in his back sometimes, in the kidney area. Please take into consideration that Shawn is in the early stages of the second phase of recovery, which is learning to use his new bladder. He has complete daytime control, but nights are a challenge. Dr. Koch said it could take up to a year for full night control. Shawn sets an alarm twice a night now to wake up & empty his bladder. Without the alarm, he would wake up wet. He is only a little over 6 weeks post-op, we expect it to improve in time. Any additional questions or experiences you wish to pick my brain about, please do. I felt much better talking to doctors when I felt well informed. Good luck. Stephanie Steph2005 Wed, 22 Feb 2006 00:00:00 GMT Hi Tim (Penquin) Thanks for the past, valuable, information on the bladder cancer. How long has it been since you received your Neobadder?? Since there is a muscle around the Bladder, that streches, when the bladder fills, and tell the man that it is time to urinate. With a Neobladder, how does a man "know when to urninate"?? Many thanks, Donald P. Donald p. Wed, 22 Feb 2006 00:00:00 GMT Hi Donald, I got my neobladder installed 11/01/05. The bladder IS A hollow muscle, that expands and contracts there is no muscle surrounding it.A neobladder does the same thing it expands when full and contracts when empty the difference is the neobladder not being a muscle can not empty itself in other word there is no muscle to contract to empty it so you have to learn to use other muscles to do that but these are muscles you already use most of the time when you go now. Think of it as when you have to go real bad now and you push the urine out fast you are contracting the lower abdominal muscle this is where the neobladder is attached so by doing this act you can empty the neobladder. Practice feeling the abdominal muscle do the work so when you get your neobladder it won't feel weird. As far as knowing when you have to go you feel pressure and sometimes a mild ache and tells you that you have to go. When it gets too full you will feel the discomfort that Stephanie spoke about because it is starting to back up into your kidneys and your kidneys only like fluid going out not in. Did you call Sonia? Tim Penguin Wed, 22 Feb 2006 00:00:00 GMT Hi Tim (penguin) Thanks for your message of 2-22-06. I am Now running off to a Dr. appointment (in Rogers, Arkansas), 70 miles round trip, so will get back to you later. Many thanks, Donald P. Donald p. Thu, 23 Feb 2006 00:00:00 GMT They do this sugery all over the country. My dad had his out three months ago by a sugeron at the Universtiy of CHicago. He removed it via the robot and reconstucted it himslef into the neo bladder. I wouldnt recommend the robot because while dad is ok he had many complications. The surgeon is very experienced and the old fashioned way he can do in his sleep. hope this helps. Heart Wed, 01 Mar 2006 00:00:00 GMT the Rc which removes the prostate is not bad. Dad didnt need his urethea removed but i can tell you two facts. #1- Porstate cancer has similar tissue to the bladder and it is common for the cancer to travel there. you dont need the prostate just the nerves. if you get an experienced surgeon they are able to do so frequently. my dad eneded up having prostate cancer also so if he didnt have it out, he could have died from going undiagneosed with that. #2-You chance of survival is much greater with your bladder removed. If you wait too long it wont be a viable option and the other options arent pretty. Heart Wed, 01 Mar 2006 00:00:00 GMT Hi Heart: Many thanks for your meassage about the Bladder cancer, and the prostate. I am considering the possible directions to take, with this bladder cancer. Does your Dad have a problem with controlling the urination, day or night time?? How long ago was his bladder and protate removed, and the neoblader installed?? This sure is scary time for me. I had the tumor (in bladder) removed 12-1-05. The Cat scan of the bladder (done 2-13-06), came back Normal (the tumor had not grown back), but the Urologist said that the cancer could "still be there". Guess I just don't "follow" all the medical reasons that the cancer is probably still there after the removal of the bladder. Also, did you folks look into any Alternative cancer treatments?? I live in Eureka Springs, Arkansas, and I am not sure where all the "experienced", bladder removing Urologists are located. Many thanks, Donald P. Donald p. Wed, 01 Mar 2006 00:00:00 GMT I received 2 messages, with the exactly the same "text". One from Heart, and one from Debra B., so I will also say Many thanks to Both Heart and Debra B. Respectfully, Donald P. Donald p. Wed, 01 Mar 2006 00:00:00 GMT Here is my personal feeling after reseaching for many months the alternatives and outcomes my dad had as options to him. If you catch the cancer early -What stage are you and what grade was the tumor? Your chance of survival for a high grade superficial trumor for ten years after an RC is 85-90%. Dad has full funtion of his bladder during the day and also at night if he gets up every three hours. He had his sugery the first week of Oct 2005. The surgeon who performed the neobladder does about three or so a week. That is the most important peice of info. Go to a surgeon that has done over 100 sugeries plus! We were talked into something new and not proven the robot and as a result suffered i believe for it. My advice is do what is proven unless the options arent on your side. If you are a candiate for this sugery and have a good potential of life expentendancy than dont chane the proven! Good luck, Deb Heart Wed, 01 Mar 2006 00:00:00 GMT There is a urine test that is pretty accurate in dectecting wheter or not there are cancer cells still present and wheter your genes are not functioning well. my dads genes on this test were changed eventhough there wasnt cancer present in the biopsy. the doctor knew they were coming from somewhere and said its impossible to biopsy the entire bladder. this is the FISH test that you might ask about. Heart Wed, 01 Mar 2006 00:00:00 GMT Hi Heart: Many thanks for the test info. Could you possibly give the name and location of the Dr. that treated your Dad??I will have to make a trip to "somewhere", from Northwest Arkansas , where I live. Does your Dad have full control of his urine suppy, during the day , and especially, at night time??(with the neobladder) I appreciate the information, and thanks again. Donald P. Donald p. Wed, 01 Mar 2006 00:00:00 GMT His name is Dr. Gary Steinberg from the University of Chicago. He is a "guro" in the neo-bladder area supposdley. He does have full control of his bladder and his nerves as far as he can tell. Until recently he was not well enough to consider sexual functions. We know others who have used this doctor and have had good luck but i will tell your the negative of unicersity settings. While the nurses have a lot of experience as do the doctors, you are at the mercy of the residents right after sugery. The surgeon himself doesnt do much after sugery except for major complications and routine visits. this doctor is not the best for bed side manners either but i think hes brillany so thats the trade off. my suggestion is to get two opinons from outstanding doctors who do this all the time, if you can afford the time and expense. go to the university of chicago web site http://www.ucurology.org/urologicCancer/bladder/index.htm hope this helps! Heart Wed, 01 Mar 2006 00:00:00 GMT the robot on the prostate is the standard of care and has great results while the bladder is still in its infancy stage. having said that the research i did on outcomes said that the university settings while they are a pain to deal with had the best outcomes for bladder control and mortaltiy rates. my dad had great bladder control starting around his third month. it does take a while to get used to and is very scary but its now a wonderul invention (neo-bladder). Heart Wed, 01 Mar 2006 00:00:00 GMT Donlad, One more thing it is imperative that you move as quickely as possible becasue there is a window of opportunity to have the neo-bladder and once its gone its too late. i would make an appointment with a doctor of choice asap. if you have any trouble getting in to see our doctor and thats who you want to go to let me know and ill try and help. Heart Wed, 01 Mar 2006 00:00:00 GMT Hi Deb: Many thanks for the additional information. I will consider "all" that you have said. And, if you "think of something to add", please do it!! I am digging into "treatments", as deep as possible for a layperson, and feel like a Beginner. Again, Many thanks. Donald P. Donald p. Wed, 01 Mar 2006 00:00:00 GMT Donald, My husband is having the same feelings you are about the bladder removal being overkill. He had the small tumor removed from inside his bladder last November but the urologist did not feel that he got all of it, that it was into the muscle wall. He has just finished 3 rounds of chemo with cysplatin and gemcitobine last Thursday. He has been so sick since then, I cannot even describe it to you. He has not been dressed or out of bed since then. He cannot make it to the bathroom unless he crawls on all fours. He is dizzy and weak, can't hear or see. The dry heaves finally let up a bit today, but he has not eaten anything much at all. Today a sandwich and ice cream, that is the most he has eaten in a week. We are supposed to book his surgery for a month from now to have the bladder removed, but I wish there was a test that showed if they really need to or not. As you say, maybe the chemo was the worst, and the surgery will be a piece of cake after that. We are from Canada and there does not seem to be much of the neobladder thing happening here, not from the doctors we've talked too. He will probably opt for the bag if he can even bring himself to go through with it. I am taking him to hospital tomorrow to see if they can give him a blood transfusion to raise his hemoglobin, maybe that will help him to feel better faster. I wish I had discovered this site sooner, it is very helpful Grandmahello Wed, 05 Apr 2006 00:00:00 GMT In response to your concern re:overkill, my husband, age 50 had bladder cancer last year. With BCG treatments several times, his bladder has been clean. However on the original path report in 8/05 there was noted a slight vascular invasion, meaning there was the possiblity of it leaving his bladder. We thought we were "home free", told there was nothing to do but wait over time. Looking back, I wish they had offered something to make sure. Now the cancer has developed in his lymph nodes, and prognosis looks much worse than before. He starts chemo this week. I would encourage you to consider any methods you can to avoid it coming back. Best wishes to you!! Marie2 Sat, 24 Jun 2006 00:00:00 GMT Hello how are you doing? Sandi Sandijean Fri, 18 Aug 2006 00:00:00 GMT Tim,Please forgive me as I am very new to this type of communication.  My husband  is 56 and is diagnosed w/stage III bladder CA.. The neo bladder surgery is scheduled for June 19, 2007. I appreciate your approach and will temper it with my own  degree of faith.  As I came upon your message much later than you posted it I am very interested in hearing your feedback today.  We are very optimistic @ this point as it is contained in the bladder. I would welcome any info you might have to share.  Whatnext Thu, 24 May 2007 00:00:00 GMT Just wanted to reply since I had the same Dx at the same age.  I have a neo baddler and only experience infections once in a while.  I'd suggest having Cipro around so if he experience chills and back pain - an indicator of infection, he can start immeidately.Make sure to find someone local with knowledge of neo bladders.  Most Urologist do not perform them and are limited in their knowledge.Annual lower CT pelvic exam and bone scans are a must.  I can void myself but after about I year I have turned to using a catheter.  Make sure to have him void often to avoid the neo bladder from expanding too large.Take care . . by the way - I started chemo and did research half way through and decided to stop.  There isn't any definitive studies that prove chemo after the radical surgery does any good.      terryi Sun, 15 Jul 2007 00:00:00 GMT