Transcript of A Vietnam Veteran Who Faced Bladder Cancer With Jim Scott

November 10, 2022

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I am also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN; producers of this podcast. This podcast is sponsored by the Seagen/Astellas alliance and Genentech.

I am pleased to welcome today’s guest, Jim Scott. Jim is an army veteran and like me, Jim has a neobladder, though his is a more recent model. Jim wears many hats across his personal, professional and bladder cancer survivor lives. He is an entrepreneur, business manager and management consultant. He was diagnosed with bladder cancer in 2015 and is an active BCAN patient advocate on the patient advisory panel of the World Bladder Cancer Patient Coalition, and a consumer reviewer for the congressionally directed medical research programs among other roles. Jim, welcome. I’m so excited to have you join me on our podcast today.

Jim Scott:

Oh, thank you so much, Rick, for having me.

Rick Bangs:

So this podcast is going to be posted on Veterans Day. So I want to start by thanking you and all veterans for their dedicated service to our country.

Jim Scott:

Well, it’s my honor to have served and I am so honored to be a part of the largest family in the world, and that’s the U.S. military.

Rick Bangs:

So your military service was in Southeast Asia. Tell me a little bit about the work that you did in Vietnam and how that might relate to bladder cancer for you and many others.

Jim Scott:

Well, I was attached to 325th Signal Battalion in Long Binh, Vietnam. Traveled with a Thai, it was a local national Thai and an engineer. There are two special events in my experience in Southeast Asia that I just really appreciate the opportunity to say something about. I worked with the then Vice President of the United States, Spiro Agnew. I worked with his security team for one of his many visits to Vietnam or to Southeast Asia. And secondly, from a communication site in Bang Phli Thailand, our team worked as a part of a worldwide network providing services that would keep anyone from interrupting or blocking any form of communication to and from the Apollo 11 lunar landing project. And two very proud moments in my military career. There’s several others, but in terms of being in Southeast Asia, these are ones that I’m really proud of.

And recently someone asked me, “Where you had to be in Vietnam to be exposed to Agent Orange?” And I had problems answering the question. So I looked it up and I also couldn’t find any information about how it may have spread across the country when it was sprayed. But I looked up the California fires and the smoke that came from those fires and found that it traveled to as far away as Europe and the Netherlands from California.

Rick Bangs:

Wow.

Jim Scott:

So to answer the question, I don’t know. But I do know that the government is recognizing almost anyone who was anywhere near someplace in Vietnam where they could have been exposed and outside of Vietnam where the chemicals were stored.

Rick Bangs:

Right. And we’ve done some podcasts on that. So as a military veteran, you, like my father, had access to medical care through the VA system. So what was your bladder cancer experience with the VA like?

Jim Scott:

Well, having been diagnosed in 2015, I don’t have any experience in terms of my bladder cancer exposure to Agent Orange because Agent Orange wasn’t considered a presumptive to bladder cancer until January, 2021.

Rick Bangs:

Right. So your bladder cancer journey, which started, as you’ve mentioned, in 2015. It started with blood in your urine, but it was misdiagnosed as a urinary tract infection, or a UTI. So tell me what happened.

Jim Scott:

Oh, it’s a very interesting story. At the time, I had a primary care doctor who treated me for 30 years and retired shortly after I was diagnosed with bladder cancer. He had all good intentions, but he was treating me for a urinary tract infection for more than a year, about a year and a half, with antibiotics. The hematuria, or the blood urine, would go away. After a couple of months it would come back and I was doing a lot of traveling in and out of the country and across the country at the time. So, shame on me, but I ignored it at certain times until I could get back home and go see him. And I pay the price now because I don’t have a bladder. But he did everything that he knew to do at the time, and I don’t hold any grudges against him whatsoever.

Oh, one part about that, this is so interesting. I came back home at one point and saw a lot of blood when I urinated. So I made an urgent appointment to go see him. And I went in and I used to call him Stan. His name was Dr. Saunders, and I love him dearly. He asked for a urine sample, so I gave it to him, or at least deposited for him. And he left the room and he came back in carrying a little jar. I mean he came running in a room. He said, “Jim,” he says, “Guess what?” I said, “What?” He said, “Man,” he said, “You got some urine in your blood.” The little vial was just…

Rick Bangs:

Awful.

Jim Scott:

… It was all blood.

Rick Bangs:

Oh my.

Jim Scott:

And immediately, I mean, when I tell you immediately, the next day I was in a urologist’s office.

Rick Bangs:

Oh, I can imagine.

Jim Scott:

He didn’t waste any time getting me to someone who would give me the proper care and diagnosis.

Rick Bangs:

Wow. So then in 2016 you find BCAN. So tell me, how did you find BCAN and what are some of the highlights of your very considerable BCAN work?

Jim Scott:

Oh my goodness. How long is this podcast? One of the joys of my life was finding BCAN, or having BCAN find me. I tell people all the time, I said, “I’m so blessed to have gotten bladder cancer.” I mean, it’s just been an incredible journey. When I first was introduced to BCAN by my urologist surgeon, who gave me my neobladder or my new bladder, Dr. Jeffrey Montgomery, and I know we have a relationship with him together.

Rick Bangs:

Yes, yes.

Jim Scott:

You and I, Rick.

Rick Bangs:

He was my chief urology resident when I had my surgery. So he removed my bandage a couple days after my surgery.

Jim Scott:

Well, please put a timeline on that so that people know that this resident didn’t do my surgery.

Rick Bangs:

So that would be back in 2016, and so you would’ve known him in 2015. So maybe I broke him in.

Jim Scott:

Wait a minute. You said 2016 or 2006?

Rick Bangs:

I was in 2006.

Jim Scott:

Okay, thank you. Please clarify that.

Rick Bangs:

Yeah, yeah.

Jim Scott:

Yeah. Dr. Montgomery is a great guy, great surgeon. Did great work. But he introduced me to BCAN. He really did. And told me I should look him up. And it’s been one of the greatest things that has ever happened to me. I could not believe what I experienced when I first went to a summit and got to meet and greet the people who ran this national organization. I’m thinking when I traveled to Maryland to go to the summit, the BCAN Summit, that I’d see this company of about a hundred or 200 people running this organization.

Rick Bangs:

Right. Because that’s how much work they do.

Jim Scott:

Yes, there were six people running a national organization. I mean…

Rick Bangs:

I know, it’s amazing.

Jim Scott:

… Not just some small organization. They had so many things going on, it was just absolutely incredible. But through them, learning about my cancer from just a multitude of professional experts, was just something that they offer anyone who will come to their summits if you have an opportunity to go to a think tank or whatever, or just find a BCAN group that you can join somewhere. And then, I mean, the highlights went on. It’s like, “Being asked to share my story?” It’s like, “Wait a minute, somebody really wants to hear my story?”

And they were sincere. I mean, not just the staff, but they wanted me to share my story with the industry experts. The pharmaceutical people, the researchers, the oncologists, the urologists. It was just amazing. And then too, one of the highlights for me that really helped me tremendously was hearing the cancer stories from other survivors, caregivers, physicians and researchers. I’m a firm believer in the more we know about what it is that we’re going through, that it takes away that anxiety, that fear of the unknown. So to have that experience of just learning was just absolutely incredible for me.

Rick Bangs:

And knowing you’re not alone.

Jim Scott:

Exactly. Knowing that you’re not alone. And experiencing people coming from all over the country, and from parts of the world, to be a part of this BCAN organization. That was just phenomenal for these six people.

Rick Bangs:

Right, right.

Jim Scott:

And they just did an awesome job of promoting the research and providing a better quality of life and with the ultimate end that they’re really hell bent on and that’s finding a cure. I thought it was just wonderful. And they even gave me an award.

Rick Bangs:

Deservedly so.

Jim Scott:

Well, but I tell you what, the thing that made me so proud was the people that I received it with. It was just an incredible group. And I’m just so thankful. And I look at it on a weekly basis, I’m sure. I’d like to say daily, but I don’t want to sit here and tell stories.

Rick Bangs:

So what you get the award for?

Jim Scott:

My volunteer work and just being an advocate for BCAN and just trying to go out and help someone else. I can’t believe that someone would give me an award for that. My reward is helping someone and knowing that I helped someone, learning from them about their experience. Because everyone’s experience with bladder cancer is different, so my journey has been one to just learn as much as I can. And you learn by sharing.

Rick Bangs:

Right, right.

Jim Scott:

They gave me an award for that. Can’t believe it.

Rick Bangs:

Okay. So speaking of helping someone, you had a close relationship with Roger Sachs, who was a bladder cancer survivor toward the end of his life. And for our listeners, Roger was the husband of Karen Sachs, who was a guest on the podcast earlier this year. So tell me how you met Roger and about your relationship.

Jim Scott:

Well, it was absolutely incredible. We met at a BCAN summit. Roger was going through chemo at the time and not well. I mean, he was really paying a price. He had come to the meeting and wasn’t feeling well at all and felt that he had to leave early. And we were on a break and I had a hotel room where summit was being held. So I offered Karen and Roger my room. I said, “Look, I’m going to be in the summit. You’re perfectly welcome to go up and just lay down and get yourself together and if you choose to, come back to the summit.” Because I thought it would be a way of him to continue to stay involved with the summit, because he was really, really adamant about being an advocate for bladder cancer.

And he ended up going home because he really felt that bad. And so he left. But when he left, we stayed in touch. I mean, we talked frequently and just talked about things we could do, things that we were doing, things that Karen was doing and how, with what her struggles were with bladder cancer, she was a caregiver for him. And just incredible people. I just love them to pieces. I really did, from day one. And they had the good fortune of meeting my wife. I hope it was good. But they met Yvonne and we just really hit it off together. And Roger just was an incredible individual. Just very strong, faithful, just a great, great guy. And I really, really am so thankful to have gotten to know him.

Rick Bangs:

And so Roger had an ask of you in his final days. So tell us what that was.

Jim Scott:

Yeah, it’s awesome. I’ll never forget it as long as I live. Roger, he said to me that we were BCAN sled dogs, and he entrusted to me on September the 4th of 2017, just before his passing, he said, “Jim,” he says, “You’ve got to be the sled dog from here on, buddy. You’ve got to carry the advocacy load for both of us.”

Rick Bangs:

Wow.

Jim Scott:

And I’ve never forgotten that. And to keep it in front of my mind, thanks to Rick here, I took over the Detroit BCAN walk and I had a team for the walk and the name of my team is R Sax Pack. And the R stands for Roger, but the R means to me that he’s mine. And so that’s my story about Roger and I carry him with me all the time. I just thank him for sharing with me his courage and strength and love of family and how Karen took care of him. And it’s continued to stay in BCAN. And, again, be the sled dog that Roger talked about.

Rick Bangs:

Oh, that’s a great story. So one of the positive outcomes from the Covid pandemic and George Floyd’s tragic death has been a pretty heightened awareness by the public of the disparities in healthcare in the U.S. As a person of color, what thoughts do you have on the healthcare challenges and the solutions we need to institute both in general and for bladder cancer?

Jim Scott:

It’s something I’m learning more about every day, even though I live it as a person of color. I’ve had some experiences that gave me pause and caused me to question. And I’ve learned to, in dealing with doctors, some doctors are so much into their profession that they kind of forget about the patient regardless of color. And they treat us as another number. And they’re dealing with the statistics and trying to see where you fit on that average scale for whatever it is that you’re going through. And so I keep that in front of mind as I look at and read about some of the implicit biases that we all have that exist. And I look for the explicit biases here in the state of Michigan. And I’m hoping that it’s spreading across the country. Doctors have to get so many CME credits every three years, and they’ve made a part of that crediting program a bias training program.

I’ve witnessed it. It’s a very effective program if everyone goes through it and that’s the only way. They have to add it to their credentials every three years. And I’m hoping that something like that will catch on, because the first thing is we have to first and foremost recognize and acknowledge and hopefully admit that there are inequities or that we do have these biases. Some of us have been living with them our whole lives. Doesn’t matter who you are, everybody has some type of bias.

Rick Bangs:

Yeah.

Jim Scott:

And we don’t realize that we let that be a part of our interactions with others. And I’m sure that there’re a lot of doctors now working on that. One of the things that I also wonder about, and I’m curious to know, it’s like bladder cancer has been told to me that it’s an older white man’s disease. And I wonder if that’s true. I wonder if more people of color had an opportunity to be screened for bladder cancer, if those numbers would change. And because I know that there are a lot of people like myself, I had a African American primary care doctor, and I’m not sure that he was totally versed on bladder cancer and what to do or how to recognize it.

And I know that my son is in a fraternity from college and he had one of his fraternity brothers bring his mother, people of color, to me after she had been recently diagnosed with bladder cancer. And unfortunately, she too was being misdiagnosed, not treated for bladder cancer for an extended period of time. And she went from eight months of diagnosis to death. And it’s prevalent in women to see blood in the urine in menopausal situations and postmenopausal situations that they go through. So it’s something that you could see where a doctor could miss in a female.

But then too, a lot of African Americans or people of color have this sense of mistrust. And some of it comes from, it’s generational. I know in my early years growing up in West Virginia, I watched my father try to work two and three jobs. My mother was working and going to the doctor was not a luxury or something that they did whenever they felt bad because they didn’t have time, possibly the money nor the insurance. And it’s something I think that’s learned by a lot of us over time where we feel, “Okay, we put family before self,” and we just don’t go to the doctor. My wife now has to push me out of the house to go to the doctor on occasions. That’s just something I just don’t regularly do unless it’s scheduled or I have to.

And having a neobladder, especially in the early years, and Rick, you can attest to this, I found that there were a few times I had to go. I had no choice. But it’s been really interesting to be a part of some of these diversity programs and hear from doctors and hear how doctors want to be sure that they are not being prejudicial in any way in their service and their staff’s. Because they will bring staff members in as well on some of these discussions. And I think it’s great, because that’s where it starts. We have to face it. We have to look at what it is before we can ever figure out what it is that we can do about it.

Rick Bangs:

Right. So tell me a little bit about the Black Man’s Cancer Action Network.

Jim Scott:

Black Men’s Cancer Action Council. Oh, I tell you, just an awesome group of guys. I joined just a couple years ago, actually, on the advisory panel, to get it started. They have or have had for a number of years a Cancer Action Council in the Detroit Metropolitan area, and their branches of it. Then they started this Black Men’s Cancer Action Council. Again, the focus was to research why Black men do not go to the doctor for any form of cancer or any form of ailment, I should say. And then see what we could do to help get men there. And we’ve created what will hopefully evolve into a ground game to go out where the men are, to find out what we can do to help them. And, in our research, we also tried to put together a series of questions that they could walk in hand to a doctor and have the doctor answer those questions for a person instead of a person having to try to think to ask those questions.

Because a lot of the men not going, or men who don’t have formal educations, men who are not comfortable being in a doctor’s office, the only thing that they want is out, just trying to find ways to better the communication, the education between doctor and patient. So it’s been a great two years and they’re doing some phenomenal work. I’ve just met some incredible people. Doctors and survivors, non survivors, PhD, MDs, just awesome.

Rick Bangs:

Wow. So there was a phrase that I have heard you use that kind of resonated with you and it was ‘everyone included.’ Tell me a little bit about that.

Jim Scott:

Well, I’m not sure of where that phrase came from. I don’t think that’s mine.

Rick Bangs:

No, no. But it resonated with you.

Jim Scott:

Well, and I tell you, I hope so because, to me, we live in a world where no one should be excluded. Healthcare in particular should be, in this country, just a right because you’re an American citizen. You should automatically have healthcare. I hope and pray that one day we get there, because everyone deserves to have a healthy existence. And I really think with that, that there would become… It will influence a lot of different issues that we experience now in different communities in terms of… Because a lot of it stems from people not being healthy mentally or physically. So I think that we need to get there.

And I don’t think that we’re that far away from that. So I really hope and pray that we can get there sometime soon. And I know with the work that BCAN is doing and as compared to some of the other organizations that I’ve been exposed to, it’s just incredible how you do, or we do, try to include everyone and reach out to everyone. Just constantly reaching out and trying to make life better for the survivors and the caregivers, and most of all, working with the researchers to try and find a cure.

Rick Bangs:

Amen. Okay. So is there anything else you’d like to share with the bladder cancer community?

Jim Scott:

You better believe it. Let me tell you something; I am so thrilled. Can you imagine being a little Black guy growing up in a town called Keyser, West Virginia, 4,600 people in the whole town, and now being out here on the world stage with bladder cancer. I just couldn’t imagine that would ever happen to me. And I’m talking about even in my adult years, and now that I’m 76 years old, it’s even more unreal. And as I travel around and as I do presentations, I try to start my presentations with the fact that I ask people, no matter what you’re going through, and everybody goes through something in this life, lean on your faith, pack your patience and take your sense of humor. And I tell you, I try to tell a joke. I try to do whatever.

I’m on the board of directors with Gilda’s Club and Gilda Radner, the comedian, she passed away from cancer. Prior to doing so, she started Gilda’s Club, which is a house, and it’s there to provide programs and support for people going through cancer. Young, old, doesn’t matter. And Gilda Radner, she was a comedian from Saturday Night Live, and one of her quotes was, “Humor is truth, just told faster.” And when you think about it, that’s so true. There’s no joke ever told that didn’t come from some part of humor. Or wait a minute, some part of truth. I’m sorry. I had the good fortune of being in General Motors for 32 years, and I got to know a gentleman by the name of Roy Roberts. He was the highest ranking person of color in General Motors at the time. And this was in the ’90s.

And I retired in ’98. And I said to him, I said, “Roy,” I said, “I really admire the fact that no matter where we are, how we’re dressed, who we’re with, you always find a way to acknowledge people of color.” And I said, “I admire that in you.” And he said to me, he said, “Jim, to forget where you come from is to take away your strength.” Now I couple that with also having had the wonderful experience of meeting a jet pilot from Vietnam. He spent five years in one of those little cages. Tom Sparks was his name, and he wrote a book, and he became a motivational speaker. And the title of his book was, Jet Planes Don’t Have Rear View Mirrors. You cannot live your life looking backwards. And when you couple those two things together, our strength has to come from where we come from. And that’s what makes us who and what we are today. But we can’t live there. We can’t live in the past.

So I close all of my presentations with the lyrics from a song. My son is a musician and he works with songwriters, and this songwriter is David Ivy. And he wrote a song and part of the lyrics in the song say, “Yesterday’s gone, tomorrow’s coming. What are you going to do with your today?” And I’m telling you, those have just been words that have really helped to carry me through this journey. And I share them with others because I hope, in some way, that they’re uplifting to them and helping them to find some peace and understanding of what it is that we have to go through and that everyone goes through something. It’s just a matter of getting through it. I like to say that we all carry a cross, regardless of whether you are of a religion that believes in the cross or not, but we all carry them differently and we all have something to go through.

Rick Bangs:

Absolutely. Jim, I want to thank you for sharing some of your time today. And yours is just an amazing story that I’m sure will inspire others. In case people want to get in touch with you, could you share your contact information so people could find you?

Jim Scott:

Oh, that would be my pleasure. I am a part of the BCAN Survivor 2 Survivor program, which is awesome. Absolutely awesome. Where BCAN will match up bladder cancer survivors, caregivers, I think too, with others who are going through something and just want to talk to someone who may have or have had the same experience. Or sometimes the survivor that calls is just trying to make a decision between a ileal conduit or the bag or a pouch, the calcaneus pouch or a neobladder. And it’s just awesome.

One of the things that I had early on when I was very active in my management business, I had a post office box and I never let it go. And I never knew why I didn’t let it go until I became a part of BCAN. And I’d like to share that with you too so you can send me something through the mail if you care to. Post Office Box is 295… Wait a minute, I got to think about what it is.

Rick Bangs:

Yeah, I mean, how often do you send mail to yourself?

Jim Scott:

Oh, I know. This is embarrassing. I do have a post office box, I promise you, and I do know what the post office box number is.

Rick Bangs:

It’s 2495.

Jim Scott:

Oh, thank you. And let me explain why I got confused. I’m in an office right now where I work out of, and the office address is 29425, and that’s all that would go through my mind. So give it to me again, Rick.

Rick Bangs:

2495.

Jim Scott:

Post Office Box 2495. Southfield, Michigan 48037.

Rick Bangs:

Okay, great. All right. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Thanks for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks, Jim.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit BCAN.org.