In the summer of 2009, I began having trouble urinating and voiding. At the time I was 54 and thought “Well, maybe it’s the prostate or something,” but it eventually went away. My family and I took a trip in the fall and I noticed the same issues and my urine was a brownish color. This happened to me years ago when I played hockey and was hit in my kidney. The next day I had brown urine and said to myself, “Well, gee, that’s blood in my urine.”
Shortly after, returning home from the trip, I made an appointment with my doctor and he had me do a urine sample. I remember him saying, “You’ve got Guinness and you’re supposed to have Bud Light.” I thought to myself that maybe it was a kidney stone, but never would have imagined that it was something more serious. My doctor ordered me to do an x-ray and of course there were no kidney stones. Then I went for a CAT scan and it came back indicating a small polyp that was about two and a half centimeters. Because of the polyps, my doctor immediately recommended that I see a urologist.
I made the appointment with the urologist and he reviewed the CAT scan then advised I would need a cystoscopy. After hearing that, I knew that it was bladder cancer. My mother had bladder cancer. I was familiar with it. I remember him asking me if I smoked, and I said “No, I’ve never smoked.” But after being in the funeral business for 23 years, as a funeral director and embalmer, I was regularly exposed to formaldehyde chemicals and that could have been part of the issue.
I also had a family history of bladder cancer. My mom was diagnosed in her early 60’s. Thinking back, she had issues with her bladder throughout her life, but it was never diagnosed as cancer. My mother passed away at the age of 90, so I was optimistic on my life expectancy. Even though I was familiar with the disease and I had a feeling that I had it, hearing the words “You have bladder cancer”, my brain shut down and went to another place. Thankfully, my wife was there and was able to speak on my behalf.
When the test results came back, it stated I had right ureteral orifice, high-grade papillary urothelial carcinoma, no invasion. They called it a deep bladder tumor consistent with your urothelial carcinoma with marked cautery artifact and was a high-grade papillary carcinoma with necrosis involving superficial propria no muscular present. The urologist explained to me there is a grade one, grade two, grade three, and he said, “You could be more grade two. But if you are grade two, we treat it like a grade three.” After my diagnosis, like any other person, the first place I went to was Google and that is how I found BCAN. When I was looking online, I was interested in hearing discussions on bladder cancer and not just the same facts that you get from other sites. I did a lot of reading on the BCAN website and found it very educational. I told myself that I would come back to the site and report on my cancer-free outcome. There are a lot of scary stories on the internet. So, it is good for others who are going through this to know there are positive outcomes.
I scheduled my next procedure for February and had another in March of 2010. My urologist made sure he got the muscle tissue that was in there and the test results showed no muscular invasion identified. I was happy that even after the first procedure there were not any recurrences, at that point, I started with BCG treatments. I did BCG treatments for six weeks and I tolerated it pretty well. Some of the side effects I experienced was burning urination, a little blood in the urine and feeling a little out of it for the rest of the day.
As for advice to others, I believe that we must make sure that we are advocating for ourselves. Make sure you are comfortable with your care provider. If you are not, seek out another specialist. Also, do not rush into something. I was diagnosed in December and my first cystoscopy was in February. Take some time to do the research. Make sure you try your best to stay positive and not dwell on what is going to happen. Just take it step by step.
I did have my mental ups and downs and I was incredibly open with friends and acquaintances about what I was going through. When some people receive a cancer diagnosis, they do not want anyone to know or they do not want to talk about it. I found that I was talking about it all the time. I was telling people what was going on, telling people what I was going through. It helped me a lot to talk about it and have a sense of humor about what I was going through, especially while doing my treatments. I want others who read my story to know that after being diagnosed, bladder cancer is not a death sentence. It has been 10 years since my diagnosis.