My Journey from Bladder Cancer to Urostomy to Life - Lessons learned from my experience 

I have a similar story. In 2015 I went to my family doctor for my annual physical. As part of the assessment I gave a urine sample. My doctor called a few days later to say the was a microscopic amount of blood in my urine (hematuria) and she was sending me for a KUB, an ultrasound of my kidneys, ureters and bladder. I had no signs or symptoms, no visible blood, no pains etc. From that a mass was found on my bladder and I was sent to a urologist to be scoped. The urologist said I had bladder cancer and 4 days later I had a TURBT, a biopsy. After 3 tortuous weeks of waiting for the pathology report, the cancer was confirmed as aggressive muscle invasive. There is a lot more to the story at this point, the outright fear, the tears, questions, worry and in my case a situation induced period of depression, but the end result was 3 months of chemo followed by a radical cystectomy to remove the bladder, prostate and several lymph nodes and other tissue to test. The good news was that there was no cancer outside the bladder and the chemo had done it’s job as there was almost no cancer left in the bladder. Note- people always ask me if I couldn’t have kept the bladder if the chemo was so successful. The short answer is ‘no’. The risk of recurrence is consider too high, having the bladder removed offers the highest chance at 5+ year survival. Although I have had ongoing issues stemming from the cancer and surgery, I am still going strong 7 years post-op. My wife and I travel overseas annually, we hike, cross country ski and we play pickleball 2-3 times per week. I do have to put up with certain ‘things’ that are inconvenient at times (dealing with the external bag, leaks etc) but the most important thing is I still have life, and a pretty good life at that!

This video is my inspiration to keep fighting !

Thank you for sharing

May I ask how did you decide to get ileal conduit and not neobladder?

Why isn’t there ever Harley very small amount of videos on upper tract bladder cancer also as I know it’s rare but it’s still out there and people like myself. Would like to hear more about it. Why is there never know videos for me to see your peoples experience on it would love to see something.