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Dr. Willie Underwood, a Board-Certified Urologist and Public Health activist, talks about his journey to medicine, his battle with prostate cancer, and the fight for health equity.
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Episode Transcript
Welcome to Stay in the Game: Conversations about prostate Cancer with Ed Randall. Here we’ll chat with doctors, researchers, medical professionals, survivors, and others to share and connect. This show was produced and shared by Fans for the Cure, a non-profit dedicated to serving men on their journeys through prostate cancer.
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Ed: Hi, everybody. I’m Ed Randall, founder of Fans for the Cure, and welcome. My guest has run the Buffalo Center for Health Equity and currently serves on the board of directors of HealthNow and is a member of the Board of Trustees of the American Medical Association. He is the CEO of Will U Enterprises; whose vision statement is “Cure the health system so that we can heal the community.” He is also one of the country’s most distinguished urologists as well as holding an MPH from the University of Michigan and Health Management and Policy. Perhaps his loftiest credential, he is a longtime member of the Medical Advisory Board of Fans of the Cure. It is an honor for me to welcome to our Stay in the Game podcast the esteemed Dr. Willie Underwood. Thank you so much, sir, for being with us.
Dr. Underwood: It’s my pleasure. Thank you for the invitation and opportunity to have this conversation with you.
Ed: Thank you.
Dr. Underwood: Every time we get a chance to talk, my heart is always excited afterwards.
Ed: Me too, Willie. I want you to know that I’m available to make that exact introduction for you wherever you go, whenever you need me. I’ll come and we’ll do that for you. I want to tell everybody before we get into the medical questions that we prepared for you how grateful I am that when we were doing our baseball road trip through the minor leagues for 13 years, until this year when the minor leagues, unfortunately, did not play, about how on a few occasions you went out to supervise our table at the Triple-A Buffalo Bisons and work with others to hand out our raw material. I can’t thank you enough for doing that.
Dr. Underwood: You are welcome. Again, my pleasure. Always have fun. I even brought my daughter.
Ed: That’s great. That’s terrific. Our listeners should know, Willie, that you are an expert not only in the field of urology and prostate cancer but also in public policy. So let’s talk about where you are in Erie County in about the onset of COVID. In late April, when hospitalizations were peaking up in western New York, African Americans made up 21% of the fatalities, while making up only 14% of the population. By June, blacks made up just 16% of the COVID deaths in your county. What brought about the turnaround and the decline?
Dr. Underwood: An effort. It’s not simple, but I’m going to describe it very simplistically. Basically what happened, early one morning, I got a call from a few ministers who had had deaths over the weekend from what was believed to be COVID. They weren’t feeling well, they went to the hospital, they were told they were fine, they went home, 48, 72 hours, they died. The ministers were upset. They called me because of involvement in the community with the Buffalo Center for Health Equity and African American Health Disparities Task Force.
Then we got on a call with the county commissioner and Dr. Gail Bernstein, who is the County Commissioner of Health and the social service person, and begin to have a conversation. After the conversation, what we realized was that we needed a plan. So the group got together and created a plan that included testing, it included follow up with providers, it included a call center. We even deal with mental health issues, food, insecurities, everything.
Once the plan was put together, then politicians got involved, funding sources got involved. ECMC, Erie County Medical Center, and the district dollars that were from the state of New York who brought those together. They basically funded it, and then we just did it.
Ed: Do you think that some of the lessons you learned in helping Blacks to improve outcomes with COVID and all of the work that you went through to involve officials in the municipalities that that can be used to bring about something closer to health equity in non-COVID medicine?
Dr. Underwood: Of course, it can. What usually happens in emergencies such as COVID, people forget their fears. They say, “We got to do it. Let’s make it happen.” But then once emergency is done, we go back to the status quo of, “This is hard. This is difficult. We may not be able to do this. What if we fail?” So then you don’t do it. What we need here is the exact same thing, to say, “Listen, what if it doesn’t work?” Okay, then it doesn’t work. But doing something is better than doing nothing. And we need to basically move forward and make it happen. So we can do this around prostate cancer, we can do it around cardiovascular disease, we can do this around…you name the problem. School education…you name the problem. Once we put our mind to a solution, then we can solve it.
Ed: You’ve been a doctor for how long now?
Dr. Underwood: I graduated from medical school in 1994 and finished my residency in 2000. So I’ve been practicing for 20 years now.
Ed: So with the onset of COVID, this is new to you, even with all of your experience and all of your achievement?
Dr. Underwood: Oh, of course. This was…I don’t know what you call it. A disrupter or a game-changer. I mean, this is once in a century experience, right?
Ed: Yeah.
Dr. Underwood: And we’re starting over. It depends on who you talk to, who you think about. But my own personal perspective, I’m not even sure if we’re in the middle of it yet. And we should see it that way. But also, what we should also see is that we have huge opportunities to figure out how to not plug the gaps or the holes in our healthcare system, but to create the healthcare system that we deserve and desire, and create health of this nation that will fuel productivity that we deserve and desire. Let’s figure that out. Let’s say, “Okay, great. This is an opportunity. People are at the table. Let’s do two things.” Because if we can solve this problem that we’re calling COVID, and we spill that over to the other things, then we can solve those problems as well.
Ed: Let’s talk about you for a second. Where’d you grow up?
Dr. Underwood: Gary, Indiana.
Ed: Right from Chicago.
Dr. Underwood: Correct. Correct. We have relatives in Chicago, a lot of family and Gary and Chicago. I grew up with a lot of people around.
Ed: And a lot of famous people came in Gary, Indiana.
Dr. Underwood: Yes, Jackson.
Ed: At the top of the list. What made you become a doctor? What was your earliest inclination “this is what I’d like to do”?
Dr. Underwood: I would love to say that I woke up one day and said I’m going to be a doctor. But no, it was very serious. One day, my aunt, my mother’s older sister told my cousin and I, who were the same age, that we needed to stand here, which is outside the door, and was there in a room talking. So it’s my two aunts, my mother, and grandmother. So then all sudden, the door opened up, my cousin went in. He was there for a little bit. Then he came out and said, “They want to talk to you.” Of course, we were thinking were in trouble. We don’t know what’s going on.
Ed: How old were you?
Dr. Underwood: We were 8 years old.
Ed: Man, you’re just a little guy. All right.
Dr. Underwood: We were 8, and we didn’t know what’s what. They lived in Germany at the time, so they were there visiting. So I went in and my aunt Joyce Johnson, she said, “What do you want do when you grow up?” I gave an 8-year-old answer. And she said, “Well, we have decided that we…”
Ed: Hold on. What did you tell her? You want to be a…?
Dr. Underwood: Police, fireman. Eight years old, right?
Ed: Yeah, exactly. “I’d be an astronaut.” Who knows? “I will play for the cops.”
Dr. Underwood: That’s right. I don’t know. I didn’t really look on her face. She looked at me, she looked behind her, and looked at my mother, and my grandmother, looked back at me and said, “Well, we’ve decided that we need a doctor and attorney in the family. Your cousin has decided to be the attorney. So what does that make you?”
I looked at her, and I said, “Well, a doctor.” She says, “yes.” I said, “I don’t want to be a doctor.” And she said, “Well, why not?” I said, “Because doctor has to wear ties, and I hate wearing ties.” So my mother laughed and said, “You know that’s right. She said, “That is true.” So then she says, “You’re going to be a doctor.” Then a little while later, maybe some time passed, she came to me with a photo of this guy in the newspaper, and he had on the turtleneck. She said, Read this article. You’ll see he’s a doctor, and he’s not wearing a tie. So you’re going to be a doctor.”
Ed: But what was the deal with the tie? What was your opposition to that? And Willie, by the way, it’s a really good thing that back in the day you were not in Catholic school?
Dr. Underwood: No, I was.
Ed: Oh, were you? Really?
Dr. Underwood: Yeah.
Ed: So that was part of the deal?
Dr. Underwood: That was the deal. I was in the Catholic school kindergarten, first, and second grade. I always had these ties that I would hate to wear. I hated them. I was such a child that was literal. So when I would get to school, I wouldn’t wear a tie. We walked to school.
Ed: And this was any kind of tie? This wasn’t like even the ones you had to make them into clip-on ties.
Dr. Underwood: No, this wasn’t even that. This was a little thing you put around your neck, and it sort of clicked together like this. It was a simple little thing, and I just hated it because it was around my neck. You had to button up shirt. I would wear it, I put it in my pocket, so then when I would get to school they would say, “Go home and get your tie.” Of course, I never said to them that it was in my pocket. I was such a literal person. They said go, “Home,” and I said, “Okay.” And I would go home. My grandmother would be there and she’d say, “Why are you here?”
Ed: With your tie in your pocket, “What are you doing here?”
Dr. Underwood: “What are you doing here.” I’d say, “They told me to go home and get my tie.” “But the tie is in your pocket. How come you didn’t tell them that.” I’d say, “I don’t know.” “Go back. Forget it. You just wear to tie you. Make sure your tie is on when you leave the house.” So I hated it. I hated wearing a tie. Now I love it. But that was the first thing that came to my mind. Doctors wear ties.
Ed: So now get the picture of the guy with the turtleneck who’s a doctor.
Dr. Underwood: Right.
Ed: Okay. So now this is a game-changer?
Dr. Underwood: Correct. Correct.
Ed: Go ahead.
Dr. Underwood: But that’s gone now, right? I can be a doctor and I don’t have to wear a tie. That’s the only opposition I have to it, therefore I should be a doctor. Now here’s the interesting thing. I didn’t know that you had to be good in math. I didn’t know all this other stuff because I’m 8 years old, right?
Ed: Exactly.
Dr. Underwood: It was just an idea. Then once that image was imprinted in my brain, then you start to say, “Okay, here’s a goal. Now how do I reach that goal despite anything else in my reality?” It’s here. So you don’t know but that’s where you’re headed. That’s how I do everything. That’s my philosophy of life. Let’s build an image for it and let’s make it happen. And if you fail, you fail. So what? But we’re going to build this thing now that I see it in my mind. And if you can’t see it in your mind, then you can’t achieve it.
So once they imprinted that in my brain, “We need a doctor…” And the way they did it was magical, was brilliant. We decided that we need a physician and an attorney in our family. We need this in our family. Our family existence depends on this. This is how we’re going to move forward. This is our survival. This is our thriving. All these things. She never said that, but those are all the things that went into my subconscious. “So this is not about you, Willie becoming a doctor. This is about you becoming a physician for our family, to improve our family, to improve our community, to improve our society. We need you to do this.” If you look at everything I’ve done in my career as a physician, it’s been fulfilling that service, that purpose that was created that day by my family.
Ed: What an inspiring story this is! The fact that it’s not just about you, but it’s about lifting up, elevating the entire family.
Ed: You’re such a little guy at 8 years old, but coming to learn, boy, you’re going to have to learn a lot of math and you’re going to learn a lot of science, was that at all daunting to you?
Dr. Underwood: No, no. It’s interesting. Again, it goes back to my family. The caveat and the backdrop to this, which is sort of mixed in this, so we move to Gary, the white part of Gary, which was Miller. I went to Marquette Elementary School, they put me back. I spent three years at elementary, third, fourth, fifth grade in special ed classes.
Ed: Why?
Dr. Underwood: Because that’s where all the black boys were. All black males they put us all in there. We’re undereducated. So going into the sixth grade, I was in third reading grade level. The exact same reading level I was when I left my previous elementary, the St. Monica’s. And then I was on the seventh and a half grade math level, because I would sit around at home. My aunt was one of my teachers, and she would bring math books home, and I would sit around and do math because I could learn math on my own. By studying the examples, I was able to teach myself math. And I thought it was fun.
But here’s the interesting thing. When I had trouble in science or math, my mother would say, “Your father is really good in math, therefore, you inherited it.” What’s funny is that it is true. I wasn’t raised by my father at all, so I didn’t know if this was true or not at the time. So I believed it. But it actually is true. My father is really good in math and science. A great dude. But what that did also, it also said again, going back to the subconscious thoughts, that, okay, I may be having trouble now, but I can figure this out. Why? Because it’s in my blood is, it’s in my bones. Deep down, I’m a natural at it. Just like I am in football. There’s no natural anybody. Everyone has to work hard and practice. Baseball, football, mathematics, whatever you’re doing, you got to put time in. So all these sort of events sort of came together that allowed me to be able to put it in perspective. And I’ve been blessed.
Ed: You came home from school to do math problems. The rest of us came home from school to watch The Three Stooges and Abbott & Costello.
Dr. Underwood: Yeah, I did that too.
Ed: But it wasn’t your primary focus. Willie, how did you winded practicing urology and driving public health policy?
Dr. Underwood: I wanted to be an open heart surgeon. Once I got into medicine, I started dreaming about being this great surgeon that kicks open the door and they’re putting the gown and masks. I’m in the gloves. Right?
Ed: Yeah.
Dr. Underwood: I’ll put on the heart.
Ed: “Here I am.”
Dr. Underwood: Exactly. In medical school, I really didn’t like general surgery. I didn’t like general surgeons. I didn’t the whole process. I mean, I was all in on the process.
Ed: Why?
Dr. Underwood: Because of the environments. I’ll tell you. At SUNY Upstate Syracuse, although I got honors in surgery, I was the first black at SUNY Upstate to get honors in surgery that people can know about that. No one seems to say that that’s not true because the Blacks who’ve all gone there we all know, before me. But when I did my fourth year, the head of surgery, not the head of the department, the head of the surgical program, he would not meet with me. And you had to meet with him to get a letter.
Ed: Hold on. Why wouldn’t he meet with you?
Dr. Underwood: He just wouldn’t. He would send people to tell me that he’s unavailable. I was scheduling an appointment, and he would send another medical student … he would meet with the other medical students and then tell them to tell me not to show up.
Ed: Wow.
Dr. Underwood: So I was like, “This is a mess.” Even when I walked up to him. They had a program where the students could have the option of giving a presentation. Every other student said, “No,” and I said, “Yes, let me give a presentation.” But he said, “Since you’re the only student that wants to do it, no.”
So I really started thinking about that and I said, “Is this something that I want to be a part of?” Then at the same time, when I did my anesthesiology rotation, I was in an open heart room and I was in the urology room. And they were doing kidney cases, prostatectomies. Also, the urology residents used to meet at the same time every day to go over –rays, CT scans. I would always go with them and meet with them there and go over CAT scans with them. Because they were cool guys. They were just, “Hey man.” I show up. I said, “What are you guys doing?” They say, “We’re going to CAT scans. You want to come?” “Sure.” “Are you here every day?” “Yeah, every day.” I came and did x-rays with them.
Then one of them, Imbesat Daudi saw me outside of the library, and he says, “Hey, don’t you want to be a urologist?” And I said, “Why on earth would I want to do that?” Right? And he says, “What? You don’t want to be?” He said, “Dude, why do you always come up and do x-rays with us?” I said, “You’re a bunch of cool guys and I like to learn.”
Ed: “I like hanging out with you guys.”
Dr. Underwood: You’re right. He was like, “Really?” What that did again imprinting in my brain. Then I started thinking about it, thinking about it, thinking about it, thinking about it. So I said, “Well, I’ll do a sub-i [sub-internship] in urology, and I’ll see what I think.” And then that was it. Here’s the things I love the about the body is that the people we take care of, we take care of them for years. Many of them for the rest of our lives. Because it’s not just you come in with appendicitis and take out your appendix. We’re intimately involved, like a primary care doctor, but at the same time, we’re surgeons at the same time. So that I fell in love with. Then the people have an opportunity to help families through urologic issues. That was it. I didn’t know it was super competitive. I didn’t know any of that stuff. And luckily I got…
Ed: Just as well.
Dr. Underwood: That’s right. That’s right.
Ed: You’ve given us a peek into your personal life. Let’s go a little bit farther inside if you don’t mind. You’re 44 years old and you’re an esteemed urologist, it’s 2009 with a one-year-old daughter, and you had just received the results of a PSA test on you. Tell us the story.
Dr. Underwood: Yeah, yeah, man. It had jumped from one to two in a year, and I knew that that was a problem. I remember my daughter and she sitting there, pick her up, and I’m holding on to her in the corner and I’m crying. I was crying so bad. Maybe my brain had done the rest. I got prostate cancer, I got high-grade prostate cancer, I’m going to die from this, right. And my daughter really pats me on the back. Like, “It’s okay, daddy.” Like the stuff you do with the kid, right? The first thing I did was get my life insurance stuff straight and everything, put together before I had a biopsy.
Then I had a biopsy, and the first biopsy was a mess. The dude told me it was negative and all this stuff, but it really wasn’t. He had done an insufficient biopsy. The prostate is divided up into six sections. And four to six sections, he didn’t get any prostate tissue at all. But he didn’t tell me that. I didn’t find out about it until about a year and a half later.
Ed: How ironic is this that an esteemed urologist, one of the country’s great neurologists is, if you will, mistreated?
Dr. Underwood: It’s sad. It’s sad. All the person had to do is to say, “Hey man, here’s the story. This is what happened. You want me to continue to take care of you or not?” But he didn’t. He has to live with that. So the devastating thing is when I found out and how I found out. I called a buddy at Rochester, called friend of mine. He was actually out of town dealing with someone’s mother. But he tells me, “Hey, man, I’m going to fly back. I’ll take care of you.” So I get second biopsy, and that biopsy is negative. So I’m like, “Great. I’m good. I forgive this cat over here. You’re wrong. You’re a horrible human being, but I’m going to stay away from you.” And I’m happy. But then my PSA continues to rise and it gets up 3.36.
Ed: Once one.
Dr. Underwood: It was once one. So we’re talking about a three-year period that is now 3.36. So then I’m going through a divorce, and I decided I want to change my life insurance. And I had a whole thing that was divided up to different things or whatever. So there was a big policy and a small policy to get to the amount of money I wanted. The large policy said, “Fine.” The small policy…” The first said, “We were concerned about your rising PSA.” So I wrote this very elegant letter that the summary said this: “Don’t you know who I am?”
Ed: Good for you.
Dr. Underwood: “What are you talking about?”
Ed: “I’m Dr. Willie Underwood for goodness sakes.”
Dr. Underwood: “This is what I do.” So the larger policy said, “Okay, great doctor, you’re approved.” The smaller policy wrote back and their letter went something like this. “We don’t care who you are, and it’s our money. If you want our insurance, then you need to go get a biopsy.” So they first said, “Repeat the PSA.” It was the first time they brought it up. When I sent that letter, they said, “You better get a biopsy or keep on stepping.” So I called my buddy and I said, “May I get a biopsy.” He said, “You don’t need one.” I said, “Yeah, I know, but let’s do it.”
So we go to do it and we go to his office, and he fits me in. So he fits me in on a day he doesn’t really do biopsies. So he goes into the biopsy and the probe is broken.
Ed: Oh, man. Wow, what a nightmare this is.
Dr. Underwood: Yeah, the probe is broken. So he says, “Willie, see, that’s God talking man. You don’t need a biopsy. Why don’t you go home?” So then I say, “No, why don’t we go to the hospital.” He said, “I’ll take you to the hospital at the end of the day, but you got to hang out here all day.” So I hang out all day messing with his staff, creating problems for. So then we go over to the hospital, and I said, “Look, man, why don’t you do a saturation biopsy?” So he’s like, “Look, you don’t need a biopsy at all and now you want to saturation biopsy. What is wrong with you?” I said, “Man, my guts just tell me. I want to resolve this once and for all. Do a saturation biopsy.”
Ed: Take a quick moment to tell us what that is.
Dr. Underwood: So basically, he did 24 cores. He did 26 cores: 24 from the prostate, and he took one from the side from the transitional zone. So it turns out to be 26 cores. So that dividing it into six sections, he took four cores from each section instead of two cores from each section.
So we get it back, and he calls me up. I can remember exactly where I was, where I was walking past. This guy and I talked all the time. So him calling me wasn’t unusual. When I heard his voice say, “Do you have a minute?” I said, “Wait, let me sit down.” I can hear it. He said, “Do you have a minute?” Because he calls all the time and now “You got a minute?” “What do you mean you got a minute? What’s up?” He says, “Do you have a minute?” And I heard his voice, I said, “Let me sit down.” And sit on the bleacher thing—little bench.
So he starts walking me through this. “24 cores. You got one core. It’s Gleason seven, dah, dah, dah. We should probably sit down and talk and go over it or whatever.” And I said, “Give me a few months to clear my ward schedule, and let’s get this done.” He was like, “What?” I said look man, “I’ll get this taken out but I need to get some stuff in order first.” But I got busy months out of our schedule…
Ed: Of course, you do.
Dr. Underwood: …the patients weren’t their fault that I got prostate cancer. So I said, “We’ll get this taken. We’ll get it scheduled for.” So we scheduled for December the 12th 2012. I had radical prostatectomy, bilateral nerve-sparing. He did like a bladder neck reconstruction thing. I had a big prostate and I had cancer in every section of the prostate. Some Gleason 6, some Gleason 7.
Ed: It’s still very emotional for you—I can tell—as it should be.
Dr. Underwood: Yeah.
Ed: So you’re undergoing treatment and yet you continue to see patients. I once heard you say that the most powerful thing you do in this business is share. Share with us if you can have the journey of prostate cancer affected your interactions with your patients.
Dr. Underwood: At first, I kept it a secret. At first, I kept it secret from everyone. I mean, literally. My daughter and my ex-wife, the people at work, except for the people intimately involved and my best friend Nate. So when I first got diagnosed, when I said, “Oh, let’s go to surgery or whatever,” I’m going to tell you, I was scared. I was scared. I was scared. I was scared. I thought…
Ed: You know how it could be multigenerational. Was there any prostate cancer in your family?
Dr. Underwood: My father was diagnosed with Gleason 6 cancer at age 74. He was an old guy, small amount of cancer that was never a problem for him. At the time, I am a young cat, and I got Gleason 7 cancer. And my mind is really filling in all the blanks. Literally, I saw the whole path to death. I could see it. So I’m on the phone and I’m outside and I’m on the corner because I can’t be inside because my ex-wife is in there and my daughter. I’m outside on the corner and I’m just going off, going off and going off. I’m like, “I can’t believe this. I’m going to die. I’m not going to see my daughter graduate high school. I’m not going to see her get married.” Every life event that a father lives for around a daughter. But then I said, “You know what, it’s pissing me off too. I’m not going to live to get social security. I’m giving them all money.”
Ed: That doesn’t usually make the list, you know. There’s all these things about life experiences and wonderful moments, graduations, marriages. Social Security doesn’t usually make it in that list. “I’m getting ripped off.”
Dr. Underwood: Correct. Correct. I’m putting money in but I’m not going to get money back. So my buddy started giving me ideas about…Shawn really talked me through this situation. And I said, “I don’t worry about that crap.” But I didn’t use ‘crap’. I said, “That’s the crap I tell my patients.” Then all sudden I hear a pause on the phone and he’s dead silent. Like dead silent. And this is my best friend and my brother. We grew up together. Dead silent. I said, “Are you still there?” He says, “You lie to your patients?” And I said, “What are you talking about?” He says, “Do just said. Do you lie to your patients'” Then I said, “No, I don’t.” He says, “Okay, then. Do you tell them they’re going to die when they come see you?” I said, “No.”
So then he walked through it and I said, “But man, I know the odds.” And he was like, “I don’t want to hear about no doggone odds.” But he didn’t say “doggone”. He said, “You already said that. You’re a statistical improbability.” He said, “Look at your life. You’re from Gary, Indiana, single-parent home. You’ve done all these things. You’re statistical improbability. I’ve never ever heard you talk about odds. You see it? You do it. You don’t talk about odds. You just do it. So just do this.” And I’m like crying. I’m on the corner crying.
So then I said, “I got to live. I got to live. How do I live?” But not only do I live, how do I be a better Willie Underwood after this experience? Because this happened for a reason. I know it happened for a reason. So it can’t happen to destroy me. It has to happen and make me better—to be stronger.
Again, for a while, you know, I kept it a secret. One day, a guy came in, and I could just see it in his eyes. So then finally I just talked to him about me. But not just about me having prostate cancer, but about how I felt. Because I saw that in his eyes that was afraid of dying. Then I just talked about that. Then it evolved to me telling not just my story, but really using two scriptures to help sort of put it together.
One is Psalm 23, David, where he talks about the Lord’s my shepherd. But he says, “Although I walk through the valley of shadow of death, I shall fear no evil. But that’s not the piece I focus on. The piece of focus on is “Goodness and mercy shall follow me all the days of my life.” Then the second one is where Jesus—this is in Matthew, Mark, and Luke—He talks about if God feeds fowls of the air, and does all this for the flowers and everything else, then this is what God will do for you. But most of all, what he says is that worrying cannot extend one minute of your life. It cannot extend one minute of your life.
So then I started wheezing those two things together. Goodness and mercy shall follow me all the days of my life, and worrying cannot extend one minute of my life. So why am I going to worry? What I’m going to do is believe that goodness and mercy shall follow your days of my life. Although I’m walking in this situation that is chaotic, I don’t know what to do, I’m fearful, but I’m going to continue to walk, I’m going to continue to just keep moving forward. Why? Because goodness and mercy shall follow me all the days of my life, and worrying won’t make a difference anyway. It won’t make it better.
Ed: Reading my notes from a speech you gave, I recall that you almost immediately tell men who are diagnosed with prostate cancer, fear doesn’t help. Which is an extension of what you’ve just said.
Dr. Underwood: That’s right. Fear doesn’t help. That’s right. Fear, worrying does not change anything. But what does change something? I’m now 55. So let’s say everything went wrong. Everything went wrong and all I really had of life was two years. So I live that life and fear and worry or live that life in joy and happiness. Which one is better? Joy and happiness. Because fear and worry won’t make it better.
Now if I feared and worried and I live to be 100, what type of life is that? What have I done? I’ve made myself and everyone else around me miserable. But instead what I’m going to do is deal with it. I understand there’s a risk of incontinence, I understand there’s a risk of erectile dysfunction, I understand with radiation, there’s a risk of inflammation of the bladder and the rectum. Understand that if I do active surveillance, there’s a risk that the cancer reoccurs. I understand those things. So let me just make a decision to live with that decision, but be purposeful, let’s move forward. Goodness and mercy shall follow me all the days of my life. I want to have that in my spirit, and I’m going to live it internally. And I’m going to try to give that externally as well.
Ed: And this profoundly affected your future interactions with patients after your own experience.
Dr. Underwood: Correct.
Ed: Completely different.
Dr. Underwood: Completely different. Because that’s what I focused on. That I’m here to help them through the process. A lot of men with their significant other, come in, they want you to make a decision for them. My job is to help you through this, to give you the information but help you think about it, but also help you think about who you are as a human being and what does living mean. I don’t want to die. Okay, great. But do you want to live? That’s a different thing.
“No, I want to live.” Okay, great, then let us live.” I don’t know how long you going to live. But what I can do is give you some tools to help you live. I don’t control how long it is. It could be prostate cancer. It could be a drunk driver. It could be whatever. Who knows? But what I do know is, what am I doing today to live the best life possible? Whatever that means for me. And make contributions to the world, to my family, to myself. Because in the end, that’s what life is. I changed “I don’t want to die” to “I want to live.” Because fear is “I don’t want to die”. Living is “I want to live—is an action statement moving forward with positivity. And I expect to live.
Ed: And we’re so grateful that you are. Take us for a moment in our remaining moments about coming out of the office with your patients and into the world of public policy. At what point in your medical career did you begin to take note of the significant health inequities faced by blacks and poor Americans? At what point did you decide to position bridging race and class gaps in health equity at the center of what you do?
Dr. Underwood: When I was a resident. When I was a resident I had a guy come in, and we had a ward service clinic at the time. I don’t have those anymore but the residents ran the clinic. And the guy came in and he had insurance and he waited for hours to see me. He had been diagnosed years earlier, and he had not been treated. Now when he presented, he had metastatic prostate cancer. Is was a black guy. Again, he had insurance, had a nice job. And it stuck with me because I didn’t understand what was happening.
So then I started looking around and I started realizing that people would seek me out and come see me in the clinic as a resident—and they had health insurance, they could see other urologists—because they were here we give a talk or some of their relatives heard me give a talk. So then I started to raise the questions whether racial differences in the treatment and receipt of prostate cancer treatment and why. I was told that it didn’t exist, that wasn’t true, but I could see that it was true.
That sort of led to me doing Robert Johnson Clinical Scholarship program that led to me doing the research in this area, that led to me positioning myself and doing what I can to try to move health equity forward. Of course, we didn’t call it that then. We went from differences to disparities and now equity. But the truth of the matter is it goes back to what my family told me why I needed to be a doctor. It goes right back to that. From an 8-year-old young guy going, “I don’t want to wear a tie.”
Ed: Did being on the business end of prostate cancer as a patient rather than as a urologist change you as a doctor and as a person?
Dr. Underwood: Yes. As a physician, as a researcher, as a scientist, I saw a lot of things and experienced a lot of things that basically said, “Hey, if you thought that you had done enough, you haven’t. And that you need to think about this from a different perspective.” It gave me a different lens. And I try to use that lens. That’s what we’re doing now. It’s helped evolve with the Buffalo Center for Health Equity. What we’re doing now, which is, of course, beyond urology diseases and prostate cancer.
We’ve noticed that in five zip codes in Buffalo, the mortality risk of disease was 300% higher than the rest of the city, the rest of the county and state. So, that’s not acceptable. We need to fix this. How do we fix it? So, what I’ve learned nationally in the policy world and as a physician, and as a patient, try to figure out, how do we create an infrastructure that actually work, strategic plan for improving the health of the region? To me, again, I believe that that’s what they were thinking when they called me in the room and said, “We need a doctor in the family.” So I decided that not only my family needed a doctor but other families too. So let’s be their doctor.
Ed: Good thing that surgical supervisor was such a jerk because he gave the world a noted urologist. Your story is inspiring. I am so lucky to know you, to call you a friend, to have you on our Medical Advisory Board at Fans for the Cure. God bless you and yours, Willie, and stay well and stay safe. Thank you so much for taking time out of your hectic schedule to join us on our podcast.
Dr. Underwood: My pleasure. Again, it’s my blessing as well. God bless you. Thank you.
Ed: If anybody wants to be in touch with you, how can they do so?
Dr. Underwood: You can reach me in multiple ways. You can always email me at [email protected].
Ed: So everybody can stay in the game just like this podcast. Willie, thank you, and best wishes.
Dr. Underwood: Thank you. God bless you. Let’s stay in the game.
Ed: Perfect. Great.
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