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

It was in the fall of 2016 when I noticed that sometimes my urine would have a slight discoloration. It was very subtle, just a light pink tinge that would only happen occasionally. I really did not think anything of it. At that time I was doing a lot of running and I thought it might be related to recently completing a half marathon. My wife, Angie, who is a nurse, said it could be serious and she persuaded me to see my urologist. At the initial visit, the doctor asked me some questions and we scheduled a more in depth visit at his downtown office. Still I thought it was nothing, maybe at worst a kidney stone.

At the second visit to the urologist’s office, to my shock and dismay, I had my first experience with receiving a cystoscopy, and if that wasn’t enough, the doctor noticed a tumor the size of a quarter. I asked him what he thought it was and if it was benign. At my doctor’s recommendation, we scheduled a surgery two days later to remove the tumor and determine its make up and how deeply it had penetrated the bladder tissue. In January 2017, I was diagnosed with non-muscle invasive, high-grade papillary urothelial carcinoma (T1HG). After doing some initial research on bladder cancer, I then went to the nearest NCI designated comprehensive cancer center for a second opinion, which was the James Cancer Center at Ohio State University. They confirmed the cancer, and after another surgery, to verify margins, they placed me on a BCG treatment regimen.

Also around that time, my wife and I both retired from our jobs in Ohio and were planning to move to North Carolina to be closer to our daughter and three grandchildren. I am now being treated at the Levine Cancer Institute in Charlotte, NC and Dr. Stephen Riggs is my current urologist/oncologist. I have completed 18 BCG treatments and thanks to my excellent medical care, I have been found to still be cancer free during my last cystoscopy, on December 16, 2020. I am now over four years cancer free and I am monitored with cystoscopies and cytology every six months.

In addition to my excellent medical care, I am very grateful for the help and support that BCAN has provided. I was put in touch with BCAN in the spring of 2017, through the James Cancer Center. I have used the BCAN and Inspire websites for valuable information and support. I especially enjoyed BCAN’s annual BCAN Bladder Cancer Summits for Patients and Families, which I have attended since 2019. These summits provide a wealth of information and the panel experts were very informative. They answered some of my questions regarding the BCG shortage since my doctor had stopped my BCG treatment short of the recommended protocol.

Also, as a Navy veteran, the in-person 2019 Summit even gave me the opportunity to meet a fellow Navy veteran who is also a bladder cancer survivor. We started talking and he served on the same ship as I did, USS Independence (CV-62) and he also lives close to where I live, and is treated by the same doctor at the Levine Cancer Institute. What a great coincidence! We have become good friends.

I am very grateful to BCAN and I am glad to volunteer to serve on their Survivor to Survivor (S2S) program, participate in patient advisory boards and in the Walks to End Bladder Cancer to raise awareness. BCAN has also inspired me to write my Congressman and both North Carolina senators on bladder cancer issues. Additionally, I wrote a letter to the editor on the impact of the BCG shortage on bladder cancer patients that was published in the Charlotte Observer newspaper.

What I would like to share with my fellow bladder cancer survivors and especially to the newly diagnosed is to make every attempt to live life to the fullest. Cancer and COVID have made me realize that life is fragile and it is a precious gift. I know the feeling when you are first diagnosed with cancer. When I first heard those words “cancer,” I was devastated. I didn’t know how my future, that I worked so hard for, would turn out. For my journey, the key was to be proactive and engaged with my medical treatment and wellness choices.

Since my cancer diagnosis, I have researched ways to maximize my immune system response and have developed the good habits of eating healthy, getting enough sleep, and ramping up my exercise regimen. One thing that gives me pleasure and also significantly boosts my exercise level is competitive swimming. I train with the SwimMAC Master team in the Charlotte, NC area and since my cancer diagnosis, I have competed and won medals in my age group (65-69) in several nationally competitive swim meets, which have included the 2018 YMCA Master National Championships (Silver medal, 200 Butterfly), the 2018 UANA Pan American Masters Championship (7th Place medal, 200 Butterfly) and the 2019 NSGA Senior Olympics (Bronze medal, 200 Butterfly). I am presently training to compete in the USMS Short Course Nationals in July 2021. Below is a picture of me swimming.

I believe that each of us, by getting the best medical care possible, by engaging and using BCAN resources, and by developing a positive attitude and maximizing personal wellness, we can beat bladder cancer. I humbly ask all bladder cancer survivors to be proactive in their fight against the disease. Let us attack bladder cancer together on all fronts. I am grateful and energized to have the opportunity to fight for a cause and purpose in which I most strongly believe in and on which my future health depends. Together, through science, innovation and collaboration, we will beat bladder cancer! The challenges are great, but the power of the human mind and spirit, when working together on a common, focused goal is infinite!