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    Hello all. I’m Gord. I’m 65, married, retired and live in Edmonton. This is my first post on this forum. My bladder cancer journey began in July when I went for my annual physical. My doc sent me for routine blood work and urinalysis. A few days later, I got a call from his office saying he wanted to see me about my test results. The urinalysis results showed an abnormal level of blood and pus. He had me redo the urinalysis in case there was contamination in my sample. He said if I didn’t hear back from him then everything was OK. Well, I got a call. He wanted to see me the next day.

    It didn’t occur to me then this could be serious. Other than mild discomfort and occasional minor needle-like pain in my groin, which I mentioned to my doc during my physical, I was asymptomatic. I didn’t notice any blood in my urine and although I had to pee more frequently, I just chalked that up to aging, taking a diuretic for blood pressure and drinking a lot of water. I had it in my mind that maybe I had a UTI. What I heard from my doc staggered me. I had tested positive for high grade urothelial dysplasia/carcinoma. I had a panic attack right there in the examination room.

    My doc referred me to a urologist and sent me for a kidney and bladder ultrasound that detected an anomaly in my bladder wall. I saw the urologist – Dr. Adrian Fairey and he told me his working hypothesis until proven otherwise was bladder cancer. He scheduled me for a cystoscopy, which happened in September. I watched on the computer screen as the camera probed the inside of my bladder. Clearly visible everywhere the camera probed was a tumour. The next step was a TURBT done under general anesthetic, which happened in October. I also went for a chest x-ray and an abdominal and pelvic CT scan.

    At my follow up appointment with Dr. Fairey, I got more bad news. I had an aggressive form of bladder cancer that had invaded the bladder muscle. I would need my bladder removed – a radical cystectomy. There were three options for creating a urinary diversion: a neo-bladder, an ileal conduit and an Indiana Pouch. He gave me a copy of BCC’s excellent guidebook for those facing a radical cystectomy and told me to do some research. My immediate preference was the neo-bladder but I’ve had second thoughts after learning about some of the after-effects and risks associated with it. The idea of having a stoma in my abdomen and draining urine into a bag (ileal conduit) or via a catheter (Indiana Pouch) is not very appealing to me but I’ll do what I have to do.

    I’m scheduled for a PET scan on Wednesday, which will establish if the cancer has spread to my lymph nodes and I have a follow up appointment with Dr. Fairey on Friday. The PET scan results will enable Dr. Fairey to grade and stage the tumour and influence our decision on which of the three surgical options and other treatment would be best for me. I don’t know yet whether I will need to have chemotherapy as well. I know that regardless of which option we choose, my life will be very different and I also know that bladder cancer has a high reoccurrence rate so continuous testing lies in store for me for the rest of my life.

    What I’m looking for from those who’ve a radical cystectomy is, what is life like for you now? What are the pros and cons of the three options from your perspective? It’s very encouraging to know that I’m not alone and many have taken this journey before me. What I’ve seen on the BCC website has been extremely informative and encouraging. Any feedback anyone can give me will be greatly appreciated. Thanks for taking the time to read my post!


    Hi, Gord,
    It’s hard for me to find the right words to ‘welcome’ you, but be assured that you have now found a supportive community of many Canadians such as myself who are well into living life after a diagnosis of bladder cancer. 1951 was a good year for both of us….. July in my case. I was alone with my initial urologist when given the news and had a sinking feeling, but that soon went away after I spoke with family, saw the great technology and efficiency of our health care system and met my dedicated medical team. We are so fortunate here in Canada.
    In consultation with my medical team about the same options, I decided to go with the ileal conduit option because the faster recovery period and relative simplicity would allow me to get back to work in a timely manner since I have not yet retired. There were a number of other determining factors that you may have already researched….. but everyones condition and life style is different, so this is a very personal option. The only ‘Cons’ in my case are several leaks, (but this can be eliminated by familiarity, timely changes), and the ongoing cost of the appliance, but subsidies are available. You can read a detailed diary of my journey in this forum.
    I had my operation in January and was back at work in a few months thanks to relatively early detection. Now, my only ongoing challenge at this point is getting the most ‘mileage’ out of my ostomy appliance (which is very inconspicuous).
    Wishing you all the best, and feel free to keep in touch here or in messages.


    Kingston and the 1000 Islands


    Hi Gord,

    You’ve taken an excellent step in joining this group. You will never run out of support and it will be from people who’ve been there. BCC was my rock.
    I had my turbt in early July this summer and found out I had high grade Stage 2 bladder cancer which would require a radical cystectomy and a diversion. I chose the neo. I had the surgery on Sept. 21, and I think I’m starting to feel more confident with it.
    It’s frustrating doing the research for the best option for you, since you’re not very likely to come across anyone who can say which one he/she preferred. Most people seem to be happy with their final choice. I guess because they’ve accepted and gotten used to the change in their lifestyle.
    Good luck with your research. Don’t forget that BCC can put you in touch with people who will share their experiences over the phone, so there can be a very useful back and forth.
    Take care,


    Hi Gord
    Just wanted to let you know you are not alone. We have an excellent bunch of volunteers in Edmonton who have experience with what you’re going through. If you private message me with contact info, I can have a volunteer contact you. We started a support group a few years ago & have been supporting one another ever since. We have people with the different bladder diversions you could talk to.
    Take care


    Hello Gord
    So sorry to hear you are now a member of the “bladder cancer club.” You are not alone, there’s lots of people to support you. Keep on this site, connect with the Edmonton group. Share your questions, your concerns, your fears and your triumphs.
    My bladder cancer was caught early, so I can’t advice you about an RC, but I can say without reservation that this group of people will become like your family and will help you on your journey. You are not alone.
    Take care,


    From one Gord to another. Our names are not the only thing we have in common, are they? You asked for info from those who have had an RC. Mine was 3.5 years ago, at age 53. I had three months of chemo prior to surgery. Cancer free from the day of the surgery. I am now a more than satisfied owner of a pretty well functioning neo bladder. I would say that if you are healthy enough to be considered, want to continue an active lifestyle, and have things work much the same as they do now, a neo is worth considering. Yes, the surgery is longer, a little more complex and takes a little longer to recover, but it is entirely doable. Yes, the training of the neo bladder takes time, and trial and error, and a bit (ok, a LOT of wetness!), but it seems that most regain daytime continence, and many nighttime as well. And what is not gained can be managed pretty well. My experience has been very good. I say that even though I have had a couple of mild complications. First was a couple of infections during my immediate recovery time = short hospital day. Then I had to go back a couple of times in the first couple of years for day surgery under anestetic, once for bladder stones, and once to widen the bladder neck. In an out, and back home. Things worked much better after that. And I am one of the minority of neo bladderers that has to self catheterize daily. Not as big a deal as it sounds, easily done. But despite these things I work full time, I travel, am active, am fully continent day and night, and life is pretty good. Feel free to shoot any questions along the way via this forum or PM me and I can give you contact info if you would like to chat by phone. There are different parts to this journey, and a set of questions for each one. But this can be beaten! Hang in there, Gord, step by step, and keep reaching out. You are among bladder buddies!


    Hi Gord

    I had my RC last April at age 64, preceded by 3 months of chemo. I chose a neobladder and am reasonably satisfied so far. If you browse around on this site you’ll find quite a few discussions on which option to choose. Most seem satisfied with what they have chosen. My decision was based on my lifestyle and discounted temporary issues such as training time for the neobladder. I’m here for the long haul. I have hiked, gone on a week long ocean kayak and camping trip, am just finishing five weeks of travelling overseas and getting ready for another ski season, so the neobladder isn’t preventing me from doing anything. There are a few adjustments to make though. I’m happy to give you more details if you want, or to talk by phone. Let me know.


    Hello everyone. I had my appointment with my urologist on Friday and he had surprising but good news for me. It turns out the tumour may not have invaded the bladder muscle after all. Also, the tumour has been confined to the bladder and has not spread to the lymph nodes or anywhere else. I have Stage 1 urothelial carcinoma, high-grade, invasive into the lamina propria. They were not able to determine if the tumour was invasive into the muscle wall. Because the tumour is so aggressive, they can’t determine with 100% certainty that the tumour hasn’t or won’t invade the muscle, therefore, my urologist recommended that my bladder be removed and a urinary diversion created. I could have opted to have another TURBT to try and scrape out any remaining tumour but my urologist said this would be like playing Russian Roulette.

    He said that because I’m otherwise healthy and relatively young (65), I was a good candidate for a neobladder and that’s the route we’ve chosen to go. He stressed that this will be major abdominal surgery involving the gastro-intestinal system as well as the genitourinary system with many potentially serious post-surgical risks and side-effects. There will be a 10 – 14 day stay in hospital and a 3 – 4 month recovery period at home. He’s done over 100 neobladder constructions and is very confident it will be successful. He said if all goes well, I should have an 80 – 85% chance of long-term survival and would likely live to an old age and die of something else. Needless to say, my wife and I were tremendously relieved.

    I’m being put on a waitlist for surgery at the University of Alberta Hospital in Edmonton, which could happen as early as January.

    I want to thank from the bottom of my heart all of you who replied to my post. The kind words, encouragement and empathy was overwhelming and just what we needed to hear. I’m grateful that Bladder Cancer Canada and this forum exist. I’ve already, in a short period of time, gained a lot of insight into this disease and am beginning to learn from you what recovery from surgery and life with a neobladder is like. This is very encouraging to us. I will continue reaching out on this forum for support and practical advice. I’m also highly motivated to give back to others who are just embarking on this perilous journey.


    Hi Gord

    It’s good to hear that some uncertainty has been resolved and you know what direction you’re going. I know that helps a lot.

    Recovery is a rather vague thing because it’s a gradual process that doesn’t happen overnight. It also varies significantly for individuals depending on their physical issues and personalities. For myself, I listened to my body and did as much as I could while trying not to overdo it.


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