“Guess what, Jim? You have some urine in your blood.”

Vietnam Veteran and BCAN volunteer, Jim Scott shares his bladder cancer story at the 2018 Bladder Cancer Think Tank

My name is James Randolph Scott, Jr. (aka Jim), a native of Keyser, West Virginia.  This is my story about finding my new normal, while keeping my faith, packing my patience, and keeping a sense of humor. I am a bladder cancer survivor. I am also a person who walked around for a little more than a year, with blood in his urine, ignoring it and had no pain. I now have a neobladder!

I left my corporate job to manage our son, who is a jazz saxophonist. As we traveled in 2014, and I would see blood in my urine. I called my primary care doctor, whom I’ve known for 30 years. He said, I probably had a urinary tract infection. He’d send me an antibiotic. I’d take it. It would go away; it’d be gone for a couple of months on an off for more than a year. Later, it got to the point where I really wanted to know what was going on. I went into his office one day and he said, “Give me a urine sample.” And he says, “Guess what, Jim? You have some urine in your blood.” It was all blood. And at that point he said, “No, we have to do more than what I’ve been doing.”

He sent me to a urologist, who did a cystoscopy. The urologist saw that I have these tumors, as a matter of fact, one of the tumors was the size of an orange, along with 20 others. So, he scheduled me for a resection (TURBT). I went in and he removed the tumors. He said, “I know you have bladder cancer and there’s a hundred percent chance that your bladder cancer is going to come back. It’ll probably come back worse than what it was.” I said, “Okay, what’s next?” He said, “I believe your bladder has to come out.”

Now I am a layman. They started talking about multifocal, muscle invasive, high-grade, papillary, uro… what the heck is that? Thank God for my wife, who said, “Okay, wait a minute! We need to slow these guys down and get a second opinion.”

In the process, the doctors said I had to have four cycles of chemotherapy.  After which I was to have a radical cystoprostatectomy… okay? I didn’t know what that was either. The doctor did give me some choices. He said, “You can get the Indiana pouch, the ileal conduit, or we can do the neobladder.”

My wife did so much homework. We live in the Detroit metropolitan area. and she found people at the Karmanos Cancer Institute. She said, “Okay, the neobladder keeps the plumbing all the same. Let’s look into that.” That’s the route that we decided to take. In the process, they told me about my tumor pathology… I had carcinoma in situ. “Sit where? Okay.” So, I had to find out what that all meant. They also said it was non-muscle invasive. I understood that. They further told me I had prostate cancer. Along the journey of dealing with all of this, I ended up in a hospital with a blood clot.

I’ve experienced an awful lot through my journey with bladder cancer. My doctor sat down, and he said, “Okay, where did this come from?” He asked, “Are you a smoker? Smokers are highly prone to get bladder cancer.” I never smoked a day in my life. I don’t smoke, I don’t drink, and I have bladder cancer. He asked, “Were you in the military?” I was in the Army and came out as a Sergeant. I was a communications expert. As a disabled vet, I now get benefits because of my exposure to Agent Orange in Vietnam. They attribute my bladder cancer to that.

I went through a preoperative exercise intervention (clinical trial) prior to my surgery. They took out my bladder using robots at the University of Michigan Hospital.  I had five pin holes where they put the cameras and robotic surgical arms inside of me. This is how I received my neobladder. They cut out the diseased bladder, built me a new bladder out of 23 inches of my small intestines. My new bladder has no nerves or muscles attached to it. Therefore, I went through physical therapy after the surgery to learn to hold my urine and void by using my pelvic floor muscles.

Now to my involvement with BCAN, I tell you this has been a wonderful journey. It is a beacon of light and a beacon of hope. I have been so honored to be a part of it. I organized a Walk in Detroit. I am involved in the Survivor-to-Survivor Program. As a result of that, I have met some wonderful people from all over the country. I talk to them about their journey and beginning journeys. We also have conversations before and after they have a neobladder, ileal conduit, whatever the case may be. Sometimes the only thing I’m doing is listening. I love the Speakers’ Bureau, of which I am a part. I love speaking to the fire departments and first responders. Every time I go out and talk to people about bladder cancer, I learn so much more. I know I will always be a life-long learner in this fight to end bladder cancer.

For those of us who are advocates, our job is to hopefully go out and generate awareness. Our challenge is to help in bringing about a cure. That’s one of the things I love about this organization. BCAN is not interested in building more cancer facilities, it’s about finding a cure.

As a bladder cancer survivor, I am engaged in cancer research, advocacy, and community building. I donate my time, talents and treasures to several local, national, and international bladder cancer research and advocacy organizations:

  • World Bladder Cancer Patient Coalition (WBCPC), Patient Advisory Panel
  • National Bladder Cancer Advocacy Network (BCAN), Speakers’ Bureau
  • Congressionally Directed Medical Research Programs, Peer Reviewed Cancer Research Program (PRCRP), Consumer Reviewer
  • Gilda’s Club, Ambassador
  • Advisory and Oversight Council (AOC), Member
  • Black Men’s Cancer Action Council (BM-CAC), Member
  • “With Love, Me” presented by Your Cancer Game Plan with Katie Couric and Jim Kelly (live on stage in New York City)
  • Capitol Hill Day
2018 Best of BCAN Awardees
(Left to right: BCAN CEO Andrea Maddox-Smith, Jim Scott, Pam Harris, Bill Russell and BCAN Co-Founder Diane Zipursky Quale)

In 2018, I was awarded the “Best of BCAN Awards” which “recognizes volunteer excellence and commitment to the bladder cancer community.” The knowledge acquired through memberships in various organizations has provided me with the vision to inform the public in multiple spaces, i.e., barbershops, with former colleagues, national medical conferences, community health fairs and with church members.