Visit our helpful bladder cancer forum today at CancerCompass.com to find online resources and research information from responses. http://www.cancercompass.com/message-board/cancers/bladder-cancer/1,0,119,10.htm Sat, 25 May 2013 00:00:00 GMT Sat, 25 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  My kerry blue terrier is 13 yrs old and most probably has TCC of the bladder. (Transitional cell carcinoma). It was detected about 6 weeks ago via ulatrasound. He was on Piroxicam for 1 month and the tumor grew. We are considering Vitamin C Infusion therapy for him. He is also on supplements now and I've changed his diet. Part raw/part cooked. Meat and veggies. very little fruit. He also has dry eyes. Has anyone done the Vit C infusion therapy or know someone who has for this type of cancer. Thank you. I'm desperate and devastated. http://www.cancercompass.com/message-board/message/all,71905,0.htm Markybarky Fri, 24 May 2013 00:00:00 GMT I will be having surgery to remove my bladder. I will be wearing a bag. Can anyone tell me what to expect after surgery? Was wondering what to expect the first couple weeks after. Thank you in advance. CW http://www.cancercompass.com/message-board/message/all,71699,0.htm cwood003 Sat, 11 May 2013 00:00:00 GMT I would appreciate hearing from a survivor who has had adenocarcinoma of the bladder.  My husband has just been diagnosed.  The doctor said there were no cancer cells in his blood at this point.  He's had no problem with his intestines but he will be getting a colonscopy asap.  The doctor says he doesn't think it has spread there yet but has to check.  My husband says he will refuse to have the bladder removed.  He admits it's a pride thing but I am terrified that this will be his only option.  If anyone can provide some insight and experience I would be most grateful.   At this point all I can do is shake inside.  I think more insight would help me to cope.   http://www.cancercompass.com/message-board/message/all,49574,0.htm susanbg Sun, 18 Jul 2010 00:00:00 GMT My brother was diagnosed with urachal adenocarcinoma.  In November 2011 doctors found a tumour on his bladder. It was small, so they were able to perform surgery and remove it. In December 2012 my brother found out that the came back, and it was much worst this time. It spread to different parts of his body.  He tried chemotherapy, but it was too much for him, so he and his wife have been trying to do what they can naturally. Unfortunately, it does not seem like he is getting better. He has recently been told that he most likely has 6 months to 2 years left to live, and that in this time his condition will get a lot worse, so he should look into hospice care. I am looking MD Anderson, hoping to get him an appointment there. Can anyone who has worked with MD Anderson tell me if there is a more direct number / office that I can call aside from their main phone number (1-877-MDA-6789) or if there is anyone specific I should speak with? Any help would be great. Thank you!   http://www.cancercompass.com/message-board/message/all,70736,0.htm blackbasil Mon, 04 Mar 2013 00:00:00 GMT My husband finished 7 weeks of radiation (33 treatments) at the end of April. He also had chemo each week to enhance the radiation, and now has 5 cycles of chemo to go every 3 weeks. He has been on pain medication because at first the tumor was pressing against a nerve and caused considerable pain. He has taken oxycontin and hyrdrocodone daily for three months. At one point, however, before the end of the radiation treatments, he was "weaning" himself off of the pain medication since the pain was much less. Then he completed the radiation and has what I believe from reading in books such as THE GUIDE TO SURVIVING CHEMOTHERAPY AND RADIATION "radiation cystitis". He has tried several drugs to rid himself of the intense pain and burning in his bladder, especially after urination, including Pyridium, Pyridium Plus, and B & O Suppositories, as well as increasing the strength of the Oxycontin. Nothing seems to work, and this is causing him to be very depressed. It is affecting his sleep and appetite which were not good to begin with. When he went in for his last chemo, he was drained and thought that he should skip treatment that day. The doctor reviewed his blood counts and said everything looked good. The medical oncologist and the radiation oncologist both have said he's doing well, though he wonders how they know, and if he's doing so well, why is he in such pain? He has said that if he could just get rid of this intense pain and burning, he could function better. As it is, he has taken to bed and seems to be clinically depressed. (He just started taking Paxil.) Has anyone suffered with cystitis following radiation therapy, and if so, how did you treat it? Have we just not given the drugs time to work? We would appreciate any advice. http://www.cancercompass.com/message-board/message/all,2158,0.htm Sheilab Mon, 30 May 2005 00:00:00 GMT Hi, This is my first time posting to this site.  I am a 45 year old mother of 2 teenage boys.  I was diagnosed 2 years ago with stage 4 colon cancer and recently have learned that the primary site may be bladder - urachal adenocarcinoma is my new diagnoses.  I have underwent 3 surgeries and 8 months of chemo without positive results.  My oncologist is recommending further chemo to begin in 3 weeks.  I am terrified.  Chemo has left me with many terrible side effects, some irreversable.  My hair is finally getting to a stage where I can go without my wig.  My quality of life while on chemo was horrible.  I am told of course that my disease is not curable and that there is no treatment that has been beneficial for urachal cancer so I am faced with deciding whether or not chemo is the right choice of treatment.  In my heart I feel chemo is NOT the right choice and that I will live longer and better without it.  My question is......is there anyone out there who opted out of chemo and is at peace with this decision. http://www.cancercompass.com/message-board/message/all,60647,0.htm defytheodds Tue, 12 Jul 2011 00:00:00 GMT Hi I have t1 stage bladder cancer have been having surgeries for the past 3 yrs to have the tumors removed my last surgery was about a month ago and have been having more side effects then ever can stay away from bathroom for more then an hour or two usually sooner,wake up every hour to hour and ahalf to use the bathroom and now doctors are pushing to get my bladder removed I'm scared, I have no insurance and have been going thru a charity hospital though the treatment is good I still wonder,and as I said having alot of fear don't want to have this done I've been told it changes your live in alot of ways ,if someone could give me so hope I would appreciae,even though I' a 57 yr old man I do want to go on with a normal life . Thanks http://www.cancercompass.com/message-board/message/all,71217,0.htm TimSageless Sat, 06 Apr 2013 00:00:00 GMT My husband has a recurring bladder cancer that is on a nerve in the sacral area.  It's stage 4.  I would like to know what treatments are available.  He is in constant severe pain.  He had a radical cystectomy in 2001 and after chemo treatments he was cancer free for 10 years.  The same bladder cancer reappeared in 2011 on the nerve.  This time he received treatments of both chemo and radiation, but the cancer has not gone away.  It is causing severe pain to his lower extremeties.  He is 63 years old and he needs help. Is there anyone with a similar problem and a possible solution or cure? http://www.cancercompass.com/message-board/message/all,71466,0.htm naheeme Wed, 24 Apr 2013 00:00:00 GMT My beloved Sadie was diagnosed with bladder 2 years ago.  It has been a long journey but she has overall handled it well.  We never did chemo, only rimadyl, an antibiotic, and mytoki oil which is a mushroom oil packed full of Vitamin D that we placed over her food.  I'm sure as with all cancers there is a progression.  The vet said I'd know when it was time.  We did have a biopsy done a few weeks ago and an ultrasound.  That only confirmed that the tumor is taking up 80-90% of her bladder, and growing in her eurethra, not great news. The other organ functions were all still good. She is straining more and more and it seems painful.  Blood present always, and lots of accidents, now on the furniture, in addition, to all over our rug.  If anyone can relate to this type of behavior and can provide some guidance I'd appreciate it.  We went on a walk today she did great, but now seems so uncomfortable, I'm assuming b/c of the pressure of the tumor.  I believe in quality of life and it has been a very emotional journey.  I know this board is probably for discussing cancer in people, but for me, it was like a lifeline to find someone else that has gone through this.  I appreciate any insight anyone can share.. this disease is awful http://www.cancercompass.com/message-board/message/all,64247,0.htm sadiemagoo Wed, 01 Feb 2012 00:00:00 GMT I am a female 70 years old whom was diagnosed in Sept .  Had surgery and am now on chemo.  I am trying to get in touch with others that have been recently diagnosed to see what dhemo treatments you have encountered.  I am on taxotere and carbo one treatment every three weeks. times four.  I have one more to go.  I had another Dr prescribe a harsher treatment but opted for my younger Dr's plan.  I would like to hear from survivors recent history. Most of it on the blogs is quite old.  I understand it is a rare cancer and that there are very few of us here to compare.  Thanks for any input. http://www.cancercompass.com/message-board/message/all,63995,0.htm dianer57 Thu, 19 Jan 2012 00:00:00 GMT my husband had bladder cancer and had it removed with his prostrate and limp notes.  He seems to be doing ok my question to anyone out there is there any type of vitames or meds he has to take after this large operation.  Women have to take hormons replacements do men also http://www.cancercompass.com/message-board/message/all,70868,0.htm LondonP Tue, 12 Mar 2013 00:00:00 GMT My father was diagnosed in September this year with urachal carcinoma, following further tests and scans we then discovered that this has spread to his left kidney, adrenal glands, spine and lungs. Due to how much this is spread surgery isn't an option. H has already undergone chemotherapy using the 5fu folfox, he had 3cycles but after the latest scans there has been little improvement. Therefore it has been suggested that he switch to paclitaxel and carboplatin (taxolcarbo) chemo as there have been some reports to suggest that this may work. The consultant at our local hospital in the UK hasn't dealt with this rare type of cancer before and therefore I just wondered if there is anyone who has or is currently undergoing chemo for this rare type who can offer any advice etc to help with father. Many thanks http://www.cancercompass.com/message-board/message/all,69321,0.htm Tiggi Tue, 27 Nov 2012 00:00:00 GMT Has anyone heard/had metastasis to the lungs from urachal adenocarcinoma? My husbands latest CT scan shows 2 pulmonary nodules one of which has continued to increase in size since 11/12. He has survived urachal adenocarcinoma for 3 years now after surgery (partial cystectomy), chemotherapy for 6 months, and 2 years of experimental drug infusion. However, now his CT scans shows this development. The latest radiolgical report indicates a rise in possibility of metastasis. He is being treated at MD Anderson for the past 3 years, but his doc seems to be waiting too long as far as I am concerned at this point. Even though the nodules have increased in size to 5 x 4 mm, the doctor is having him wait another 3 months to have a PET scan. I have looked up information about lung cancer and it is not at all optimistic. . As a matter of fact it looks so grim, that I am very very upset right now. Anyone with any experience or knowledge in this area, please post. http://www.cancercompass.com/message-board/message/all,70067,0.htm vtoole Sat, 19 Jan 2013 00:00:00 GMT I have just learned that I have stage 2 bladder cancer. I wish to thank all who have commented. My doctor says that removing the bladder, Prostate, seminal vesicles, and a couple of lymph nodes is what needs to be done. I told him I would rather die. I am concerned less about myself than about my wife of 51 years who is not really that well. I don't want to be a burden to her. So if I have this surgery, what is the quality of life. Do I became a couch potato... I love to garden and travel, are those things possible after this very invasive surgery? Could someone who has been through this, please comment. http://www.cancercompass.com/message-board/message/all,56385,0.htm LDSNIC Thu, 03 Mar 2011 00:00:00 GMT Surgery was don in July 2008.  th BCG was done on October 7/08. Check up to be done on 28/10/08. What are chaces of Bladder cancer coming back. 1 http://www.cancercompass.com/message-board/message/all,29307,0.htm haskas Tue, 14 Oct 2008 00:00:00 GMT My father was diagnosed in June of '03 and had his bladder removed. The tumor had gone through the bladder wall. The surgeon "thought" he got it all but suggested my father having some chemo to clean up anything looming. His bladder cancer is was a combination of transitional cell and small cell. He went for four rounds of chemo and everything was clear in January of 04. Enter April of '04. My parents and I go to Mass General to visit with the oncologists (a fellow and head oncologist) and they tell us they looked at the CT Scan and everything looked fine. They were just waiting for the chest scan report but they assured us it was fine. Twenty minutes later when we were in the lobby of the hospital getting some coffee, the fellow oncologist tracks us down and says he has some bad news. The report came back (in the last twenty minutes) and it showed a mass on the lung. The collective life was drained out of us. It was such a nightmare! Needless to say, my father is not being treated there anymore. How can we have faith in doctors that can't even be prepared for a patient's visit. Now we get a second opionion from Sloan Kettering in NYC and they concur with the Mass General protocol for chemo. Last May, my father started on Etoposide and Carboplatin. He had to switch last December because the tumors had slightly increased. Now he's on Taxol. Aside from low hemoglobin counts and an occasional blood transfusion, he's doing quite well. He is also on quite a regimen of alternative supplements including essiac tea to keep his immune system strong. He's only had one minor cold this whole season and he frequents his restaurant stops every day. He's 71 and doesn't have any other medical problems. He's a fighter, a trooper, and he's my inspiration. I'm just curious if anybody out there has the same kind of cancer and what your treatment is. If the taxol doesn't help matters, we may go to MD Anderson or maybe Cancer Treatment Centers of America. I feel research is on the brink of a lot of good stuff. We need to always remain hopeful and stay positive. Any input would be greatly appreciated. Thank you. llane http://www.cancercompass.com/message-board/message/all,1749,0.htm Llane Mon, 21 Mar 2005 00:00:00 GMT hi,,perhaps the youngest boy with a bladder cancer and now the young boy is back...huh.. hope the cancer compass advocacy network wont take it as an advertise... when the aggressive cancer attack me and it turned out to be a 4th stage,,,i was shocked and i thought of dying before the ultimate death come,,,,but i saw you all,,enjoying,,talking and i decided to write..YES to WRITE...and here I am,,after months till alive,,,with a book...hurrey,,i did a work in my life,,,i wrote a book for those young and olds(with a young sprit),,,yes i completed a book,,i published it and here it is with mecancer AT A YOUNG AGE: HUMAN VS divine.... i havent given the book to anybody without cancer since the pain and suffering or the few moments of pleasure are different for cancer survivors and with other who have assumed long life...I am in India and will be staying here for some months,,hope cancer wont take me that much soon.... not even to my room mates, i have shared about the book, but here we are,...i wrote it,,if you want to read please i dont know how to make you access but i will try my best... but whatever it be,,i am happy that i wrote a book which will inspire people which will make them courageous to fight againg this evil cancer and which will also make them realise the ultimate truth that they must leave one day...........wow wonderful,,,wonderful,,now i can say everybody are prividged with life but only few can left their legacy in the world and i hope i am among the few...wow,,,,welcome i dont know whether writing email-id in the message is allowed or not,,,but if you want i can give you book,,if you want for free,,take it free, if you want to pay,,pay it,,,i have 50 copies locked in my cupboard......i am sure the book will find a reader soon,,,wow life is beautiful,,,legacy is more beautiful..........i did it,,,you can also do it... http://www.cancercompass.com/message-board/message/all,70193,0.htm cancerpatient Sun, 27 Jan 2013 00:00:00 GMT I am new, I saw some old posts from 2007 on Sutent drug when I googled sutent. I have been offered this trial. I am scared and would like to talk to someone who has experienced this. I had upper bladder cancer in my kidney stage 3 high grade. I was on chemo mvac for 3 months then my kidney was taken. 6 months later 2 ta tumors popped up in my bladder which always apeered clean of cancer. The tumors were hg ta. I went through 6 bcg treatments after they were taken out. Now I am offered 28 days of sutent. I am worried if this will progress tumor growth, or will it help keep everthing a bay. please respond http://www.cancercompass.com/message-board/message/all,70142,0.htm zierwa Thu, 24 Jan 2013 00:00:00 GMT Hey everyone,  My dad was diagnosed with bladder cancer over the summer and he immediatly started chemo. He had chemo for about 4 months and is going in for surgery tomorrow. He's going to get his whole bladder removed. Has anyone had this surgery or know anyone who has? I know the recovery is around 2 months. Im a senior in high school and Im just waiting for things to get back to the way they were before i head off to college. My dad is a strong man and i know he will do whatever he can to beat this for us. So if anyone has any suggerstions, facts or anything just let me know! Thanks, SAm http://www.cancercompass.com/message-board/message/all,70018,0.htm samme Wed, 16 Jan 2013 00:00:00 GMT Does anyone have information on Doctor and clinic experience and track record with the NeoBladder surgery. I was surprised to see that the operation is a lot more common that I had thought and is being performed at many clinics and by many doctors. Considering that it is life changing with significant lifestyle changes and is major surgery it would be very useful to know which docs and clinics are achieving the best post surgery results for their patients.  http://www.cancercompass.com/message-board/message/all,69682,0.htm PeterE Wed, 26 Dec 2012 00:00:00 GMT First I would say no one understands what it means to have cancer or have a loved one who suffers from this disease. My name is Pamela velafuert I was diagosed with Ovarian cancer 5 years ago and I thought my world was over. I went from one specialist to the other and nothing worked and then I decided to turn in for spiritual guidance. I actually was not a beliver in spiritual healing and positive imaging. Yes you have heard of it. Well today I can tell you I am cancer free a SURVIVOR. Please do not let this ordeal take your loved ones from you. It is not wrong to try all options available. If you want to have this information please feel free to ask any question and I will respond. http://www.cancercompass.com/message-board/message/all,69993,0.htm chapcept45 Tue, 15 Jan 2013 00:00:00 GMT In September 2010, my dad was diagnosed with bladder cancer. He underwent a 15 almost 16 hour surgery, in which they created a Neo bladder for him. Everything was going good, then just a few months after he was told he was cancer free, lower stomach pain & tenderness returned. He began urinating blood, as well as, having frequent diarrhea with blood in it as well. He had a swollen lymph node & under went a biopsy Dec 21, 2012. The results are he has metastatic urothelial carcinoma. I can't find any information on it. Desperately wanting to find some information about this cancer. Right now I feel hopeless & petrified. Need answers before I have a complete mental breakdown.  Can anyone help? ? http://www.cancercompass.com/message-board/message/all,69989,0.htm juliejordan96 Tue, 15 Jan 2013 00:00:00 GMT I am a breast cancer survivor and was told by my urologist that I have a urachal remnant. He says given my history of cancer I should have it removed. Can anyone give me advice on this. There is no sign of cancer. Is it worth it? http://www.cancercompass.com/message-board/message/all,69979,0.htm sgalley Tue, 15 Jan 2013 00:00:00 GMT My boyfriend started out with lower left back pain a little over a month ago.  Made an appointment same day with his GP.  They assumed a kidney infection or stones, gave him some meds, checked his urine and scheduled him to come back the following week.  They found microscopic blood in this test and the subsequent one so they scheduled a CT scan.  In the meantime, the back pain subsided almost as quickly as it had shown up.  He went for the CT scan, they found nothing except a fatty liver they didn't seem concerned about, but decided to refer him to a urologist. The urologist was not concerned but checked his urine again and again, the microscopic blood.  He ordered my boyfriend then to bring in samples of his first urine of the day for four days, which he did just last week.  Well, yesterday the call came that they found the blood in only 1 of the four samples but that "abnormal cells" were detected.  Everything I am reading online points to bladder cancer and we won't know any facts until his scope is done.  He is insisting on doing it in an operating room so the DR advised it likely would not be this month, probably January.  My boyfriend is an accountant and year end is a busy time and he does not want to miss the first two weeks of work so this pushes the scope out to around the 21st.  Right now I am trying not to overreact and remain as calm as possible so he does not regret his decision to tell me but this man means everything to me and I cannot bear the thought of losing him.  I am trying to become as educated as I can right now.  Just looking for some insight or stories or just hope at this point!  Andrea http://www.cancercompass.com/message-board/message/all,69492,0.htm andreanet Fri, 07 Dec 2012 00:00:00 GMT My husband and I are about eight months into this journey with Non-invasive Bladder Cancer.  He has had four surgeries. I am beginning to feel like this diagnosis does not get a very high priority with the doctors, at least here in Las Vegas.  The treatment is delegated to Urology and not oncology.  In the Uro's office, it is among a number of other uro problems.  I don't think my husband is getting the attention he should.  His current doctor has performed two TURBT's, July and October, and did not get BCG until I ran down a source myself.  We were told there was a shortage and the best we could  hope for was the end of 2013.  It turns out that the Specialty Pharmacy he used ONLY used a source that ONLY bought from the one that was shut down.  How could he not be aware that there was more that one source for this treatment???  HE is the doctor. We have an oncologist, but he is just there to consult and has not offered much.  They had no information about BCG, either.  I don't know if it is because they don't administer the treatments or.... Folks, it is imperative that every patient needs to have an advocate to help inform them about all of their options.  It is too much for one person to handle.  It was through this mesage board and BCAN (Bladder Cancer Advocacy Network) that I even knew that people were being treated with BCG and it was available here in Las Vegas.  I am very grateful for this resource.   http://www.cancercompass.com/message-board/message/all,69793,0.htm willissl Thu, 03 Jan 2013 00:00:00 GMT