Jay Raman:
Hi, good afternoon! My name is Jay Raman and I’m a Professor of Urology, and Chair of the AUA’s Office of Education. It’s really my pleasure to help moderate this podcast series on “Engaging the Disparities in Prostate Cancer Care”. This specific show is really titled “How can we improve shared decision making?” We are looking at it from a prostate cancer survivor’s perspective. It’s my pleasure to have two very well known guests: Mike Haynes, as well as Dr. Willie Underwood. Mike Haynes is a prostate cancer survivor who played in the National Football League as cornerback for both the New England Patriots as well as the Los Angeles Raiders. He was elected to the Pro Football Hall of Fame in 1997. Dr. Underwood has done several of these programs with us, but as a reminder, he’s the Director of the Buffalo Center for Health Equity and Volunteer Clinical Associate Professor of Urology at the University of Buffalo. He has really done an extensive amount of work looking at research pertaining to prostate cancer disparities in therapy and has been funded through numerous different agencies, including the Robert Wood Johnson Foundation, the National Cancer Institute, and the National Institute of Health. He has really defined himself as a thought leader in this field. Mike, Willie: first of all, thank you for taking some time and being part of this really important podcast series.

Mike Haynes:
Thank you for having us. Being a survivor myself, I know how important it is to talk to people and try to raise the awareness. And a lot of people are sleeping right now, mentally when it comes to this disease. So, I’m glad we got Willy on the line!

Jay Raman:
That’s great! Mike, we’ll just start with you: I feel like one of the great challenges is when physicians or healthcare providers talk about the screening: gotta get screened, importance of screening: how much that sometimes resonates with patients. So maybe we’ll just start off and take us through a little bit of your story about how this all came about, how you were diagnosed and set the framework for us so that we can then use that as a springboard for the rest of our conversation.

Mike Haynes:
Well, I think you know, when it comes to pro football players, I think a lot of them feel the same way I do about healthcare. And I know when we were doing this screening at the Pro Football Hall of Fame, I had already had a physical earlier in the year, really no real reason to be there. But my boss, who was overseeing all of this, asked me to go down and take a look and see how things were going, and because I had a physical early in the year, that’s why I really wasn’t there. I wasn’t planning to go, but once I got there, I saw the guys just hanging around, enjoying themselves. And these girls who were working there…these two young ladies… who were drawing the blood, asked me if I wanted to do it, because, maybe, I could encourage some of these other guys to get involved and they would do it too.

Mike Haynes:
I said, “sure!”. And so my real reason for doing it was those two really cute girls and uh, and so I said, “okay, I’ll do it!”. So, after doing that, you know, maybe 25 minutes later, while I’m talking to the guys, Dr. Underwood comes out and he’s like “Mike Haynes!” He has a chart, my chart in his hand and he’s calling my name. And that was… that was fear! The fear of a lot of players going to those kind of screening events. So the Doctor could see something in my facial expression, and he said, “oh no, no, you don’t have to worry this test. We just want to ask you a bunch of questions”, That, that relieved me. And so I told the guys I’d be right back.

Mike Haynes:
And so Dr. Underwood asked me a lot of questions about my family history: if it ran in my family and what I knew about prostate cancer. And so I was trying to answer all of his questions honestly, but the one question or comment that he made that got my attention is when he said that, “a lot of African American men usually find out they have this disease, and because of their lack of interest in going to screenings, or participating screenings, a lot of times when they find out, it’s in the later stages”. So that got my attention and of course he had me after that. And I think maybe I’m a typical male, but I’m definitely a typical football player, when it comes to thinking about our health, like, ‘I don’t want to know’. I used to say, ‘Hey look, if I have this disease, I don’t want to know, just let me go, you know, just let me go peacefully’. This is almost like 15 years ago now, you know, I may not be here if Dr. Underwood hadn’t talked to me and realized that being African American, maybe he might have to say extra things to me that he may not have to say to other guys. But that raised my attention and it has actually helped me want to help other guys, because I know it’s not an easy thing to get guys to pay attention to this. I want them to find out in the early stages so that they can have the same kind of results I did.

Jay Raman:
So, you know, Willie maybe take me through. I think Mike hit on some of the key points. And whether it’s a football player or any other male, the reality is, you know, I think men in general, you feel fine, and there are no major problems. You know, there is a stigma around health evaluation, screening and whatnot. So take me through how you have these conversations, say with Mike, for example, or anybody else: how do you get them from a screening and the purpose of a screening, and get them involved in understanding the significance of what he was going through. As Mike said, he had two cute girls and he had a blood test because of that, but then get them from there to, ‘this is why we’re doing it’. And then obviously the significance that can occur.

Dr. Willie Underwood:
Thank you, Jay. And again, I want, thank the AUA for we’re doing this, because this is extremely important. So, I think the real key is ‘building a connection’, right? And trying to get to where we all want to go. Everyone, I believe for the most part, wants to live long, they want to be healthy. They want to be around for their families. They want to contribute. These are our natural feelings that we have because we all want to feel important, and be important. Right? So in that process, if we just keep it sterile and say, look, “the PSA does this. You need to do this. How come you’re not doing that?” Then we sort of do the exact opposite of what we want, I think. And the key is to really try to figure out, connect with, and meet people where they are. Let’s have a conversation to the point that in the end, that they want to do it, right? You know, Mike, and again, Mike was easy. I mean, to be honest, our conversation, he remembers it a lot better than I do. I remember it being a lot shorter and a lot more things, but the end of it, the end of the conversation was, you know, “this is what your PSA today is.” He said, “Well, I had one a few months ago!” And I said “Talk to your provider, find out what it was. And if it’s increased significantly, then follow up!”. Right. Sort of pushed this a little bit. And that’s sort of really what he did. Right….and out of that came, you know, for me, it was my blessing to be a part of it, but also we became friends out of this whole process. So that’s really the real blessing here. And that’s sort of the key, Jay, I think, “how do we build connections with our patients, and how do we become partners in the process?” And that’s what ‘shared decision making’ is…it’s shared, right? That both parties give their input, give their information, give their knowledge, and they reach a decision that’s not necessarily best for the provider, but it’s truly best for the person who’s most impacted by the disease. Right?

Jay Raman:
So maybe Willy: a related questionI’d ask you is …”how do you apply this sort of concept of shared decision making?” Let’s just start to take underrepresented minority populations. And that may be a very… probably is…a vastly different ‘shared decision making’ than perhaps other ethnicities, other races. So just walk us through: how do you do it? As a black African American physician, what do you do when you engage with say a black African American patient: what is that shared decision making conversation and how is that perhaps different?

Mike Haynes:
So I don’t think it’s different. I think the process is the same, but how you explain it may be different. It depends on the education or the person and where they’re coming from. But the first thing is for me to understand the person and for the person to understand me, right? You know, my wife always says, “Building trust is number one”. So we can build, or I can build trust. And if I can recognize when I’m saying things that the person is not connecting with, whether they don’t understand it, or they don’t agree with it, or it just doesn’t fit them. Right? And sort of shifting that because in the end, it’s not to try to get them to think like me, it should get them to think the way they want to think to reach a goal that they want. Now, their goals might not be my goals. Right. I give, I give you a quick example: I was talking to a friend of mine who’s recently been diagnosed with prostate cancer. I know him, I understand his situation. And what he really needs is two years to get, he just got a new job…a great job… and he’s trying to build this thing and he needs two years to do it. So what I told him was “tell your physician that”, right? Say to him, “Hey, what I’m really trying to do is get two years. So how do we create a process of so-called ‘active surveillance’ during a two year period that allows me to get to where I need to go, where I feel comfortable receiving surgery at that time”. Right? Is that possible? Is that feasible? It may not be feasible. It may not be possible. And if it is possible, what does that look like? That’s ‘shared decision making’.

Jay Raman:
So, Mike, you started off and you talked about, you had this elevated PSA test and this training and I’m sure that then led down the process of getting a biopsy.

Mike Haynes:
I didn’t know that I had an elevated PSA.

Jay Raman:
Oh. Okay.

Mike Haynes:
So, my PSA was 3.5. And so I didn’t know what I had earlier. So when, when Dr. Underwood was talking to me about it, I didn’t know it was elevated. And so when he encouraged me to talk to my doctor. So when I did, he asked me about my PSA, what was, I said, 3.5. He said, well… “When you were here before, it was 3.0”, and he goes, well, that’s not much of an elevated PSA. And then he thought about it for a minute. And he said, “…but you are African American. I think we need to be safe. Let’s get you a biopsy and make sure.” And I said, “okay!”. But I really only said, “okay”, because I didn’t know what a biopsy was. I thought it was gonna be like another blood test. I didn’t really know what was involved, because if he said, “oh, you know, it’s not much of an elevated PSA”, then I probably wouldn’t have done anything, but because I didn’t know, I went ahead and had the biopsy. And that was one heck of an experience! Is that still the same way they’re doing biopsies? Cause I think that, if it is that I, I think we need to tell guys that the biopsy is important. And, I don’t know that I would’ve shown up because he was saying, “3.0, to 3.5. That’s not much of an increase”. That might have been enough to get me not to go for the biopsy. But when he added, “well, you are African American”, I think just to be on the safe side that helped me go, you know, go along with the process. And I had the biopsy that day. And that’s when I found out I had prostate cancer, I had it in nine of the 12 places that they checked on my prostate.

Jay Raman:
It’s interesting what you say, because, you know, obviously those of us that do biopsies all day long from the medical provider physician perspective, we don’t think anything about it, but clearly, although the biopsy clearly identified cancer and obviously the cancer was in multiple areas, one wonders whether part of the sort of ‘shared decision making’ is ‘what is a biopsy? What does that entail?’ And maybe less of the, perhaps, ‘shock value’ of while the biopsy’s going on the procedure itself, just from what you’re mentioned. So, then tell me, take us through a little bit: you have this diagnosis and Willie has talked a little bit about ‘making a connection’ and being able to have the patient understand what the options are, and ultimately help make a decision about what treatment path to go down. So maybe walk us through a little bit of this: you have this diagnosis, you have nine out of 12, I think is what you mentioned, biopsies were positive. How did the subsequent steps work through this process and how did your sort of physician work with you in that discussion?

Mike Haynes:
Well, he called me to ask me to visit his office, and he would give me the results of the test. And he encouraged me to bring my wife. So right away, I knew that this is not gonna be good. My wife came and then first thing out of his mouth was, well, “You were positive. You have prostate cancer”. I don’t think I’ve heard anything he said for the next five minutes, but my wife was listening intently. I was thinking, oh my gosh. And he said “the good news is, we got it early”. And that really helped me. I settled down a little bit, but then I started thinking, “oh, I think he’s just saying that. He probably says that to everybody, so they don’t freak out and go crazy on this”.

Mike Haynes:
And so I said, “I want it out!” I just interrupted him. I said, “I want it out. I want it out”. And he says, “Mike, you’re catching it in the early stages. You’ve got plenty time to make a decision. And I want to encourage you to learn more and take your time and all that”. So, that’s really what I did. I called the AUA, and they asked “Where did I want to see a doctor? Where would I want to have the surgery?” Or whatever it is I want to do, but they gave me a lot of information about the different programs: different ways that I could have resolved it. And then I was talking to some of my coworkers at the NFL, there were a few guys I knew that had prostate cancer, and they didn’t have as much as I had so they easily took another process. But the good news is… I had time. And I was very secretive about it. I don’t know why. I didn’t want people feeling sorry for me, I guess. And on an airplane, flying back from San Diego to New York, a woman just happened to be sitting next to me: we just started talking and I said, out of the blue, “Hey, I was just diagnosed with prostate cancer”. I was trying not to make a big deal out of it. And she said, “oh, I’m an oncology nurse”. Oh, wow, what a small world! So then I felt like I could open up. And we talked and she was the one that made me feel really good. She said, “oh, well, you know, you caught it early and you’re gonna be fine. You got plenty of time to make a good decision”. I went, “oh, okay, great” and so that helped me feel better because I felt before that everybody was just trying to make me feel comfortable and I felt better hearing from her. The best thing that happened to me was Dr. Underwood. You know, I, think him being an African American helped me. If he wasn’t an African American, and he was talking to me about this stuff, I don’t know that I would’ve followed up, but his concern, because he’s an African American and I’m an African American, his concern kind of made me… I mean, when I got back to New York from Canton Ohio, the next day I called the doctor and said “Hey, I need to talk to you. I just had this, this screening, and we need to talk”. So I was on it right away. It was on my mind. And it was because of Dr. Underwood. And that’s why I’m always asking now, “do you have to be African American doctor to talk to African American men?” You know? I don’t really know: you guys probably have tons of research on that, and have some thoughts on it, but it made a huge difference for me. And I think it would, for a lot of African American men. I trusted him because he is African American. And I don’t know that I would’ve had the same situation if it wasn’t for him.

Jay Raman:
Willie to Mike’s point that he just raised here. Talk to us a little bit about, to his specific point, mean African American urologists or physician African American patient, or even this concordance of race, whether it’s African American or otherwise: that sort of connection, that trust. I think there is some literature and data out on that, maybe you can share with us sort of to Mike’s point with what we have out there.

Dr. Willie Underwood:
Yes. There is some significant data there. (inaudible) We looked at 500 people: couples, individuals, male and female, and they had white doctors and black physicians. Black and white patients and they basically saw that concordance of race was extremely important, particularly for the black patients. They felt more satisfied with the decision. They felt more satisfied with the interaction and the decision. And that was extremely important. And there other other studies that looked at Hispanics, looked at blacks and whites, (inaudible) Patricia Cooper’s new study was published in (inaudible) years ago, but there were multiple studies that looked at patient satisfaction, patients outcomes, patient decision making around concordance. So, yes: the data is there. What we don’t understand is “why”. What difference does it make? Because the data also shows that when it’s a black physician and white patients, that this concordance does not have a negative impact on the white patients, but this concordance has a negative impact on black patients. Right? So some of it is really, I think what Mike is sort of maybe saying is that what he felt was that I cared about that when I saw him, I saw myself, which is true, right. That I wanted him to have the best outcome possible. And that’s extremely important. Now that doesn’t mean that white doctors don’t feel that. It may mean that they’re unable or haven’t figured out how to relay that, how to get that connection. So to that black person who feels that ‘you might not look like me’. ‘You might not have my same background, but we’re the same, we’re connected’, and you care about them and that’s what’s really extremely important. And that’s what I believe is extremely important with patient satisfaction. That’s why I think that it doesn’t matter if it’s a black physician and a white patient, but it seems to matter when there is a white physician and a black patient.

Jay Raman:
So, one of the things that Mike mentioned is he went to the visit with his wife. And as soon as he heard the word prostate cancer, at least for some period of time, he didn’t hear very much else. And that sort of highlights two key things. Willie, talk to us a little bit about the support infrastructure, and, how that impacts care, meaning, coming to these visits and going through this, if it was just Mike Haynes or Mike Haynes and his wife, or his children, or his family, and also sort of the importance on a… well, let’s start with that. Talk to us a little bit about sort of the importance of that support network and how you put that in the framework of counseling and shared decision making.

Mike Haynes:
So, I generally tell men or patients to bring someone. And we know that if you’re single, your likelihood of receiving treatment is less than if you’re married. We know that, and it’s particularly if you’re black and single, you’re less likely to miss treatment, even if you have a high grade prostate cancer. So, having people bring someone else is extremely important. And what I tell people “two brains remember more than one, four ears are better than two”. Sometimes patients will say, ‘is it okay if I tape the interaction’ I tell them YES. ‘Is it okay if I take notes?’ YES. I draw pictures for them and give it to them. I give them whatever need so that they can connect. And it’s another thing, and this is really important: if I feel as though we’re not connecting, or I can see it in their eyes or in their spirit, that they are not in a good place, I will say, “let’s reconvene”. Let’s schedule another appointment. “Why don’t you look at a C and D and come back in a month?”. The good thing about prostate cancer is that it’s not pancreatic cancer. We don’t have to make a decision because days and weeks and months matter. Right. We know that you have time. So the key is to get the person to where they want to be. Right. So how do you do that? I mean, I’ve had patients where, I mean, literally they have had five visits before they made their mind up. I’ve had people call me on my cell. Like I had one guy, no joke I was down at Disney… down in Florida with my daughter, and the guy called me five times on that Saturday. And then finally I told him “I’m sorry, man, I’m with my daughter, standing here we’re at a Disney Park and.. can I talk to you on another day?” And he said, “oh, I’m sorry, I’m sorry. But I’m really scared!”. I said I understand, but, let’s talk tomorrow. He was okay with that. So, yes: sometimes we have to go beyond. And so cases to get people, to help people get to where they want to go. And that’s the key. I keep emphasizing that “to where they want to go” because in the end, the satisfaction comes from that they have reached THEIR goals, their desires, not necessarily my goals or my desire. Not what we may think is right or wrong, but it’s sort of what they want. Right. And in the end, they’ve gotten all the information. So if they end up with erectile dysfunction, they’re not complaining about that because they knew it and understood it going in, and they were willing to risk that. You know, the worst thing is to have someone who doesn’t do that. I had a friend of mine, his sister and my mother were best friends until they died. He got diagnosed with prostate cancer and he was getting cryo therapy. And he said, the reason he was getting cryo therapy was because it had the lowest risk of erectile dysfunction when really cryo therapy has a hundred percent risk of erectile dysfunction nearly. And, I said, what hold up, you know, I don’t, and, that’s what he thought. And that’s what he understood. So then when we walked through everything, he realized that wasn’t what he wanted, and that he wanted surgery and that’s what he’s got, and he’s been happy with it.

Jay Raman:
So, Mike, you had your surgery, what was it? 2008. Is that when you had surgery?

Mike Haynes:
I believe so.

Jay Raman:
Yes. So you’re now what 13? Well, probably close to 13, if not over 13 years out. And so my question for you is: now that you’re through this, and obviously you mentioned as soon as you got the diagnosis, you said “Surgery, I want it out! Let’s move!” And now that you’ve had some time to reflect back on that journey, is there anything that you can advise our listeners on what would’ve been better in this whole ‘shared decision making concept’, what would’ve been good for you to know? Maybe there isn’t anything, but usually there is, but what would’ve been nice to know, 13 years later, as you went through this process, whether it was timing, counseling opinions, second opinions, is there anything you look back and say, “geez, this is what I would advise others that were in my shoes to think about or ask questions about?”

Mike Haynes:
Well, I think the thing that I would like is for other men that are survivors, that they don’t just keep it secret. You know? When I found out that I had it, I thought, I don’t know, one single solitary man that has prostate cancer, but you’re telling me there’s a guy, a lot of guys out there that have it. And once I was diagnosed and I started telling people because I didn’t wanna be, I wanted to be helpful in the end. I mean, I really wanted to know a lot. And I started talking to people. One of my coaches had it. Some Hall of Famers had it. And then, one of the Hall of Famers talked to me, told me about his situation and how, believe it or not, he said, he’s really great.

Mike Haynes:
And so every year at the Hall of Fame, we started having these screenings. That was the very first year they did it when I found out. So now they’re doing it every year. And the next year, my buddy told me that, guess what? It came back for him, his prostate cancer had come back. So that was am ‘aha moment’ for me too. So that meant that I needed to continue to stay on top of it. Make sure if it does come back, I find out I have it again in the early stages. So that was really, really helpful. When I started talking about my experience, a lot of men would tell me, “I just was at an event last night”. I talk about it every time. I try to make a comment, you know, to talk about it so that other guys would talk about it.

Mike Haynes:
And as I said, it, one guy walked up. “Yeah. I’m, I’m a survivor”. And I go… “Really, how long?” He goes, “I just had the surgery six months ago”. And I’m like, wow. And so I know exactly what he’s going through, but there’s just too many people for me to ask him a lot of questions. I know it wasn’t something he really wanted to talk about, but I was proud and happy that he mentioned it right then on the spot and pulled me to the side to tell me, just said it, “I’m a survivor at this: had surgery six months ago”. And I just think that’s really it. How do we normalize it? How can we just start talking about it a lot more? Um, you know, we had all these marches for women and breast cancer, they’re talking about it! They want everybody to know: every man knows what breast cancer is, and what a symptom is, but when it comes to prostate cancer, guys didn’t have any idea what a symptom of prostate cancer is. And so I just think that’s really, you know, going forward. I think that we need to do a better job of sharing that information. And guys, I kind of get it why that is because in, in the past, a lot of guys weren’t able to have an erection, and things like that. And they didn’t want to publicize that, you know, so they just don’t talk about it. But when things changed, like robotic surgery, and now they look on a big screen, they see the nerves, they can cut all around it without ever, they’d probably still have some evidence, you know, getting the nerves, but I think that changed the game for guys and, and even if they didn’t, there’s still so many different things that they can do to have an erection, but guys just don’t wanna talk about that stuff. And I get it! But that’s what I would do. I would normalize. And that’s what I do all the time. And when I do talk to guys, I always bring up the erection. Cause I know that’s the number one thing, you know, that’s number one. And, I even say it in front of women, and I say it in front of kids if I have to, because I, I try to make it seem like, “Hey, it’s not that freaking deal”. Let’s not hide this, let’s talk about it. And it’s made a huge difference, I believe in my, my community and the people that I speak with

Jay Raman:
Willie, any sort of final thoughts, just from a medical professional perspective on how can we get better? How can we improve on this from our end? I mean, Mike’s topic, key concept is ‘normalizing it’. Making it part of conversation, but what can we do from our end, uh, in this realm?

Dr. Willie Underwood:
Yeah, he is absolutely correct. The more we talk about it, the more others would talk about it, right? There’s a lot of physicians like myself who are prostate cancer survivors: we have to talk about it from both angles from the provider angle and from the survivorship. We have to have as many conversations as we can. We should write about it more as op-ed pieces, share our experiences, get patients to share their experiences. And the more we do that, I think the more people will be open and thoughts and fear will leave. Have less fear because it’s important.

Jay Raman:
Well, I really want to thank you both: Dr. Willy Underwood, as well as Mike Haynes for their time today. I’ve now done three of these with Willie. It’s always my pleasure. I feel like I learn something every time! And Mike, obviously your perspective, as not only a survivor, but also obviously an advocate, is much appreciated both by men in general, but certainly, I’m sure you’re echoing what many athletes, are going through, now and in the future. I really want to thank you both for your time. I would ask our listeners: for any more information, please visit, AUA net.org/university and Mike and Willy: thanks again very much for your time today.

Dr. Willie Underwood:
Again, thank you very much. And thank the AUA for doing this. And Mike, thank you, my man. Always a pleasure, baby.

Mike Haynes:
Oh man. I’m so glad you came into my life, Billy, So glad.

Dr. Willie Underwood:
Thanks my blessing. Thank you, Jay. Awesome job.

Jay Raman:
Thanks a lot Willie. Thanks Mike.

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