Scott’s Story: Bladder Cancer Didn’t Stop Me

For the majority of my life, I have always been fit. As I got older, I adjusted my diet and my approach to continue being active in sports and fitness. I even started competing in Masters Track and Field in my 50s, winning a number of national championships.

I was in utter disbelief when I got the news that I had bladder cancer.

One day prior to my diagnosis, I noticed blood in my urine after a difficult weightlifting work out. I did not think much of it. I went to “Dr. Google” and read that it is normal to experience temporary bleeding from an intense or new workout. I brushed it off as a one-time occurrence and then two weeks later it happened again. A month or so went by before I finally decided to go to the doctor.

My doctor recommended labs, which consisted of a urine sample and blood work The results came back normal. The doctor’s assumption was that it could just be an issue with my kidneys, but I felt like there was more to it. Upon hearing my concerns, the doctor ordered more lab work and asked if I could induce the bleeding beforehand. I replied, “I think so.”  I knew if I did a few twisting core exercises the bleeding would return, and it did.

Once we got a good urine sample with blood in it, my doctor scheduled an ultrasound. The ultrasound revealed a golf ball size tumor in my bladder. I was surprised to say the least. Still, I knew I would not let this defeat me.

Less than two weeks later, I was undergoing my first transurethral resection of bladder tumor (TURBT). The urologist performing my procedure told me there was a 25% chance that it was not cancer. That meant there was a 75% chance it was and that was a lot to digest. Those are not the best odds, but I have been up against worse odds before, so I told myself, “Let’s find out for sure before we assume this is cancer.” 

Finally, the pathology report came back. It was cancer and it was a high grade, aggressive cancer. This was not the news I was hoping to hear but, there was some good news too. I was lucky that the tumor had grown inward into the bladder cavity, like a mushroom cloud, instead of along the bladder wall. The tumor was pretty deep into the wall, but it had not gone through. Now I needed to plan my next steps.

The urologist who performed my first resection did not have the bladder cancer experience or expertise that instilled confidence that he was the right doctor for me. So I immediately reached out to friends and family. I did not know any urologists personally at the time, but through my network, I was able to speak with several from around the country and they all recommended that I go to UT Southwestern Medical Center in Dallas.

It was at UT Southwestern Medical Center where I met Dr. Solomon Woldu and his team. The information they gave me was what I needed and wanted, to hear. Dr Woldu assured me that everyone is different and that there had been significant treatment progress made in the last several years. As a result, his team believes there is not a one size fits all approach. In other words, my bladder cancer situation was unique, just like everyone else’s. The fact that I was 60 years old, in good physical shape, never smoked, did not drink, and was not on any medications underscored this. We scheduled my second resection through which Dr. Woldu confirmed that everything was consistent the first pathology report.

His team also scheduled DNA genetic testing. Based on the results of my DNA mapping, I was offered two potential clinical trials that Dr. Woldu thought would work well for me. He and the research nurse explained both trials in detail and helped me make an informed choice about which clinical trial I wanted to participate in. He also assured me, “If the cancer does get outside of the bladder, we already have some things we can do right away based on your genetic mapping.”  This made sense, and although the medical details were beyond my pay grade, hearing that Dr Woldu and his team already had a plan laid out just in case, added to my confidence in them, and in my situation. I was even able to use my “go-to” coping mechanism of humor and joked that if I lost my bladder and still competed in track and field, spinning around to throw the shot put and discus would require that I take a bunch of SeaWorld ponchos to hand out with apologies to the judges and other competitors that happened to be standing in the “splash zone.”  We shared a good laugh as we geared up for my treatments.

My treatments have involved BCG and participation in a clinical trial for a drug called Rapamycin. Rapamycin is being studied to see if it will help prevent the spread of bladder cancer. It is also being studied for potential mental and physical anti-aging benefits. I soon discovered the issue with this clinical trial is that I will never know whether I was in the test group or the placebo group. I laughed as I saw my life being reduced to one of these two categories: Test Group or Placebo Group. When I would solve a challenging problem at work, or a complicated brain teaser at home, my reaction was, “Yes! Test group!”  But, then the next morning, when I would fall over just trying to put on my socks, my reaction was, “Oh Crap! Placebo group!”. My wife also joined in on the joke. I accidently took her car keys one day and the first thing she said was “Haha Placebo group!”   

UT Southwestern Medical Center and the clinical trial experience has been excellent. Not only does participation provide information that can help others, but it also appeals to my sense of curiosity. Both offer a great deal of comfort. When I was initially diagnosed, I read a lot of advice about the benefits of participating in clinical trials and I am very happy I followed that advice.

I have recently completed the one-year Rapamycin clinical trial and I am still receiving the BCG treatments. I started with a six-week BCG cycle, followed by several three-week cycles. The BCG cycles were initially three months apart and are now six months apart. And of course, there are the scheduled cystoscopy examinations. Like many of us, I have become more comfortable with procedures I never dreamed I would become even remotely comfortable.

So far everything has been positive and I have had few interruptions in my everyday life. Not only am I active, but I was able to continue competing in Masters Track and Field.   While I have had to fit my competition and exercise schedule around treatments, I have had one of my best years ever competing.  During the past year, after connecting with Dr Woldu and the UT Southwestern Medical Team, I have won five U.S. Nationals Masters Track and Field Championships, two World Championships and set two American Age Group records. As icing on the cake, I also just found out that I have been awarded the Tom Gage Male USA Masters Throws Athlete of the Year.

I look back at the last year and feel so fortunate for the support I have received. In addition to my family and friends, BCAN, and the fantastic team at UT Southwestern Medical Center in Dallas, the Masters Track and Field community has been an incredible source of inspiration and “big-picture” perspective.  

The journey over the last year has also served as a reminder that the excitement of participating in physical activities is based on a continual recalibration of our goals. New changes and new challenges appear in life, and we reset our goals.  If we set these goals just a little bit beyond the reach of what would be easy, we can still experience that same thrill of victory and accomplishment and, at the risk of being melodramatic, of living heroically.

The information BCAN provides has been instrumental in explaining the many facets of bladder cancer. As soon as I was diagnosed, I started reading information on the BCAN.org website and found how BCAN humanizes being a bladder cancer patient really resonated with me.  Knowledge is power and armed with the information I found through BCAN, I found it easier to advocate for myself and my treatment. With each BCAN story I read and each BCAN face I saw, I was also reminded of the importance to continue living as large, and laughing as loud, as possible.

Like anyone, I do not know what the future holds. I would like to think that I will continue working towards the best of all outcomes while accepting it is not entirely under my control. I hope that I am able to continue embracing the many wonderful people and things in my life. With the support of BCAN, UT Southwestern Medical Center, Masters Track and Field, as well as friends and family I feel like this is as possible as ever.