Tony Collier (4:22)

I was diagnosed with advanced stage Prostate cancer at 60 years of age and at the time I was training to run one of the world's toughest ultramarathons and about four months before the race I started experiencing groin pain and I just thought it was a typical runner's injury, didn't think very much about it. The pain got progressively worse and I decided that I needed to do something about it. So I went to see a sports injuries doctor and he basically suggested we do an MRI scan and called me into his office and said we're not seeing what we expected to see and while you're here have some blood tests and a chest X ray and tomorrow I'll put you in for a full body CT scan. Anyway, I went for the CT scan the following day and at 8 o' clock that evening the doctor phoned me to say he was 99% certain it was prostate cancer. And as you can imagine that was a complete shock because one minute I was training for an ultramarathon, the next minute I was dealing with cancer which was awful. I then had to drive home and break the news to my wife and it's the hardest conversation I've ever had. My wife and I met the urologist and he confirmed it was indeed prostate cancer, but then used the word incurable for the first time and that was devastating. And they went on to tell me that my worst case prognosis was two to three years. Well, eight years on, still here, my prostate cancer has remained stable considering the circumstances and my initial reaction was just complete devastation. It sent me to a Very dark place. Really forgetting about the joy of living because I thought so much about the fear of dying. Now I feel very lucky and very blessed to be able to experience more of things with my children and grandchildren and all those life experiences that are really important. I did in fact seek the help of a counselor to talk about my emotional well being. But ever since that really bad spell, I've really tried to live the very, very best I can and recognize that dark thoughts will arise from time to time. But I've now found ways to manage that and set goals to find enjoyment out of every day. But every single aspect of my daily life was adversely affected. Even now, fatigue is really debilitating. But I have found that the best way to cope is to put my running shoes on and go and have a small run. And I'm still managing to run at the age of 68.

Dr. Ganesh Taylor (6:46)

Thank you so much for sharing that, Tony. I can't really even begin to imagine. Courtney building on what Tony shared, how does prostate cancer affect day to day life? And what concerns do you often see from your experience?

Courtney Bugler (7:00)

That's a great question. And I think the most important thing when we talk about prostate cancer and we talk about therapies and treatments and doctors, is that at the center of it is people. And these are people, just like Tony said, who are living their lives, who have families, who have friends, who might have jobs and a cancer diagnosis and a prostate cancer diagnosis just disrupts it all. Tony's story is one that we hear every day at zero. Prostate cancer, there's sort of the life before cancer and the life after. And you know, what we see is it shatters a lot of what you expect, right? Like what your plans were, what your future will be, what your relationships look like. It can also be really isolating. What we see is the importance and the need for community. Because going through prostate cancer, especially a disease that has such stigma, it can feel really like people are facing it alone. You don't have to journey this by yourself, and it's just a question of trying to find that community. It's one that makes you feel like you're not alone. It makes you feel like in the sea of people living their everyday life, the before life, as I used to call it, that there are other people who understand the after and they understand the next step and, and they've been there before. There's so much information thrown at you that it can just really feel like you're drowning in information and you're all by yourself doing it. And so it's really important in our work in the US and we see it with organizations all around the world, is the importance of giving someone a lifeline so they're not doing it alone.

Tony Collier (8:33)

That really resonates with me. Courtney, I think things like your loss of self esteem, loss of body image makes life very challenging, apart from the mental health aspects. And there's a lot more we can do to support men. But I do think the peer voice is really important.

Dr. Ganesh Taylor (8:52)

It's interesting because we're talking about the sort of impact of that initial diagnosis and of course you've talked about the shock of it and you know, maybe people don't think immediately about how it impacts other people. Tony, you said that having the conversation with your wife might have been the hardest conversation of your life. Could you tell us a little bit about that?

Tony Collier (9:12)

Yeah, I mean, I walked into the house and just broke down into tears and told my wife, I've just been told I've almost certainly got prostate cancer. The challenge for our partners is significant. The fact that this affects both parties to a relationship is often overlooked. It's very, very far reaching, that initial diagnosis and the impact it has on relationships.

Courtney Bugler (9:34)

Prostate cancer is a family disease. It's a relationship disease. It is really hard as a care partner to watch it happen to someone you love.

Tony Collier (9:43)

I mean, she's one of the reasons I'm still alive.

Dr. Pedro Barata (9:46)

I'm going to add on the care provider side, it's truly important as the support around you. And actually we do feel a difference when we are sharing bad news and even throughout the management and what's happening, it makes a significant difference when someone is not alone in that process, is in the office with a significant other, sometimes more than one person. And we want to make sure the folks around that person are aware, involved. And you really talk about a team, you're not talking about someone on their own.

Courtney Bugler (10:14)

Yeah, everyone needs an advocate, I think, and often care partners are part of that.

Dr. Ganesh Taylor (10:20)

That leads me on to my question to you, Dr. Barata. So, I mean, in the context of this deeply emotional impact, which has very practical sort of ripple effects that reach beyond that initial conversation. As a doctor, when you are discussing these next steps with patients diagnosed with these types of advanced prost cancer, how do you actually approach the sort of care models, this idea of medical versus person centered support, and how does that fit in with what you were just telling us about support networks?

Dr. Pedro Barata (10:50)

It's complex, right, because you have to address the technicality of it and you have to talk about disease related factors, things like volume of the disease, timing of metastatic disease, whether or not you have symptoms that you need to address and talk about the treatments around that. Those are relevant factors and take a significant amount of time to walk through that. But then to your point, they are very important, you know, patient related factors. So we're talking about how patients feel overall. Do they have other problems in their lives that need to be addressed? And that's a very complex conversation to have. Oftentimes needs to happen in more than just one visit. And then you also have, in addition to all that, personal preferences, cultural differences, psychological considerations, emotional considerations. Right. And so of course, all the teams try their best to have a really a multidisciplinary care team approach. So, you know, having dietitians around, psychology support, if you will, or emotional support, religious support, reported times. So those resources, when they're available, are very important to be offered. And also pragmatic things like cost is also relevant. So all of this to say it's very, extremely difficult in a relatively limited amount of time to address it in one time. So often we try to break it down and try to understand what patient wants to know, walk through what's going on, understand what the plan is, and try to bring those resources available. That happens over the course of a number of visits. And it's supposed to be a conversation, so it should not be unidirectional either. So it can be overwhelming. In my experience, breaking it down, doing over a number of visits, understanding the priorities and trying to bring the resources as they're needed is important. And what I can tell you is everybody's different. We don't treat numbers, we treat people. So it indeed is a complex process.

Dr. Ganesh Taylor (12:34)

I mean, I noticed that both Tony and Courtney were nodding when, while you were speaking. And I'm really struck by the fact that the word overwhelmed came up. I think all three of you have used that word.

Tony Collier (12:45)

The way that the information is parce up and delivered is actually really fundamentally important because people absorb information in very different ways. Some people are very visual, some people will prefer to read. But I was diagnosed eight and a quarter years ago now, and back then it was very much, here's a load of booklets, go away and read them. And that was substandard, in my opinion.

Courtney Bugler (13:07)

Medical providers have to also kind of navigate a world that we live in, which is also just a deluge of information about everything all the time. Right. But we hear it all the time from our prostate cancer patients and survivors. Right. Like after you have cancer, it's like you don't even hear anything. Which is why having somebody in the room or an advocate is really important. But there is just a deluge of information. Right. One of the things that we do at zero, that we always talk about is if you. If you get to someone within 48 hours of their diagnosis, the first thing we say to them is, tell us what you understand about your diagnosis. Because how they answer that question tells you a lot of things. It tells you how they take in information. It tells you what they've understood. It tells you whether they really want all of it or they want some of it. And that's, I think, where the role of organizations and patient advocacy organizations come in. That information is presented in a way that is patient centered. It is designed for people to kind of navigate it at their own pace. And people come to realizations at different times. And I think that's one of the challenges for medical providers is they're going to see people having, you know, a similar diagnosis, but they'll be in different places on the continuum of their understanding and their readiness to talk about it or their readiness to tackle the decisions. And I think that's one of the challenges. And why prostate cancer care really kind of takes a village.

Dr. Ganesh Taylor (14:32)

I'd really like to talk about this concept that shared decision making. When you get a cancer diagnosis, there's a series of actions that need to be taken immediately. Right. And so not only do you get a diagnosis and then you get this sort of deluge of information, you're expected to make decisions as you go. And so this shared decision making is a term that we hear quite often. But I really want to know what it actually means in practice and how vital is communication within that process? So, Dr. Barato, could you take us to how you would navigate those kinds of conversations with patients in the clinic and promote this shared decision making?

Dr. Pedro Barata (15:09)

There are certainly different approaches to it. Right. I find it helpful sometimes when I step in the room and I see a patient for the first time, he's coming to see me for second opinions, which happens quite a bit. Say, you know what, you mind if you don't tell me what you were told before, but would you like me to summarize what I know about you in 30 seconds? And most people love that. And the reason why they love that is because, first of all, they can tell the care team took the time to prepare. They are not stepping in the room without knowing what's going on. I think that's the first step towards building confidence with the care team is they can Tell this team actually took the time to go over everything, my records. And so I usually summarize as objectively as I can, but I purposely do not bring up what the pitch is being offered by another team, for example. And the reason why I do that is because I don't want them to feel that I'm biased. And they somehow we were behind the scenes talking about things that are not involving the patients. And then I ask, did I miss anything? And so I'm transitioned to what I call step two, which, which is, you know, often doctors have this idea we treat people because we want to help people. But often here we do it for two reasons. One, we want them to live longer. Number two, we want them to live as best as possible. Now, those are assumptions from us. That doesn't mean the patient has the same expectation about treatments that we do. Right. So after you set the stage about here's what's going on objectively, the second is, by the way, can we talk a little bit about what your goals are, even without sharing anything about treatment options, which we will do in step three, but understanding a little bit about the patient will start telling us what he wants out of it. So I always ask, you know, can I basically summarize if I were to go through the treatment options out there, we do it as really as a conference, right? Like we're talking over the options and we make a decision about what's best and oftentimes say, document, you know, what would you do? It's like, listen, I'm not you. This is where I come from. So for me, A, B or C makes more sense. But understanding what I do understand about you and your context sounds to me that you prioritize A, B, C or D. We have to bring the technicality to it because I cannot expect the patient to know as much as we do. But I do that as a way to have a conversation where people are informed and can make those decisions.

Dr. Ganesh Taylor (17:21)

Tony, I mean, in light of what Dr. Barata just said, you know, this quite protracted conversational approach to try and get the patient in front of you to make a decision, how important was it for you to be involved in the decision making process when it came to managing your disease?

Tony Collier (17:39)

I think the hardest thing as a patient was actually knowing what you needed to know. You really don't know what to ask. You're in a state of shock. You're not really absorbing information very well. I think back when I was diagnosed, treatments were actually quite limited eight and a quarter years ago. And so it wasn't really true shared decision making. It was basically, these are the treatment options, and there wasn't a lot of support for the holistic needs. So I think shared decision making is really important. And I think the way Dr. Barata described it was superb. And I think in terms of how I ultimately dealt with it, my patient advocacy work has been a great way to support my own mental health and wellbeing. And I do lots of prostate cancer awareness talks. But there's a lot of work needed in terms of earlier diagnosis and then making sure that when men do get that worst news of metastatic prostate cancer, that the support is truly holistic. The most important thing for me, those appointments with a doctor to take somebody with you, because you don't absorb the information very well. And I think it's really important that you have somebody there supporting you. Speak to somebody else who's been there, because they can give you some guidance on what you need to ask because you don't really know what the questions are.

Dr. Ganesh Taylor (19:08)

On that note, Courtney, I'd love to bring you in from the sort of advocacy perspective. What specific advice do you give to patients about how to work with their doctor and what they can do if they feel they aren't being guided appropriately or if their voice isn't being heard in their wants and needs?

Courtney Bugler (19:25)

I think shared decision making is a step in the right direction. Now, I also agree with sometimes people just say, tell me what to do. Balancing quality and length of life, especially in an advanced setting, is a really important conversation. And that goes back to why patients really need to be in the driver's seat, because only patients know what their lives are like and what they're willing to do or navigate. But to quote my first prostate cancer oncologist that I spoke to when I was at zero, he said to me, empowered patients make doctors better. There are lots of ways for patients to be empowered, right? They're empowered with information, they're empowered with support. They're empowered with a patient advocate. I think one of the challenges is that some people don't want to be in the driver's seat, and we have to acknowledge that that's okay. So to what Pedro said, if the patient feels like they're being served, that is important. I think one of the challenges that we have at zero is sometimes the patient might feel like they're being served, but they don't actually realize that they could have been served slightly better if they had gotten a second opinion. That's a balance, and that's why cancer care in general is so hard because everybody treats their health differently. Everybody treats how they want information differently. I would love us to get to a place where we talk more about the patients being in charge of their care and their decisions with great care providers that provide them all the options and all the pros and cons, and they leave it to the patient to really decide. We're in a renaissance in prostate cancer therapies right now. More happened in the last 10 years than the 40 years before it. And what that's really moving towards is personalized medicine. And that means that patients and doctors have to think about these decisions a little bit differently. At zero, we try to empower patients to be stronger advocates for themselves. They know their body better than anyone, and if they can't speak up is to at least ask enough questions or get support for someone who can help them.

Tony Collier (21:31)

I don't think some people are capable of self advocating, and that's what the problem is. If we have men who can't self advocate, what we end up with is healthcare inequalities.

Dr. Ganesh Taylor (21:42)

Pedro, I think that would be a fantastic point to ask you directly as a doctor, from your perspective, like practically, what are the two questions that every single patient should be empowered to ask you when they come into that first meeting or that you wish that they would ask?

Dr. Pedro Barata (21:59)

I love when we're challenged in a good way. So I love when patients and families actually ask me the questions and really, truly understand. We are here to serve you and we will walk alongside you. But you are the one walking that path to Courtney's point. At the end of the day, you will be the one telling me if that's acceptable or not, if that's bearable or not. And the other piece of the story, I'm big on genomic testing. It has three components to this. One, it allows us to have thoughtful conversations about what might happen in the future because he has prognostic value number two. It opens the door to treatments that otherwise you will not get access to. We call that predictive value. And finally, it has an impact in the families because you can actually now identify your family at risk for prostate or other malignancies, other tumors. I think patients these days should be asking about genetic testing. So I would say understanding or asking about treatments as well as genetic testing. To me, it needs to be part.

Dr. Ganesh Taylor (22:56)

Of all conversations to step back and start to sort of summarize a little bit. As we reach the end of our conversation here, I'm struck by how getting a prostate cancer diagnosis is not a single Event. It seems to be really quite a protracted process, one where the initial impact is large and substantial, but much wider than you might think. It doesn't just impact the person involved, it impacts the others around them. Then there's a journey in which decisions have to be made and we have different approaches and recommendations and how to empower patients to feel like they can have that kind of level of agency and control and who else can be brought in to help them along that process. And importantly here we've flagged questions that Pedro feels patients should be asking. Basically, what is the most up to date treatment option that you are aware of for someone in my situation, but also to ask questions about genetic testing, if that's relevant to your circumstance. But of course, the picture that really emerges here is that prostate cancer isn't just about treatment, right? It's about living with the disease. And this sort of brings us to this concept of personalized and holistic care. And the question is really, how do we ensure that this treatment journey support supports the patient's overall wellbeing and lifestyle? And Courtney, from your perspective, I'm curious, what are the biggest sort of challenges that you hear about patients facing and maintaining their routines during treatment?

Courtney Bugler (24:26)

One of the big things that patients struggle with, if you have advanced disease, you're never done right. So it's a cascade of decisions and a cascade of therapies and a compounding of side effects that happen over time. But one of the things that I always say is what gets us in the way or what gets in our way is the word should. And patients will often think, well, I should be able to do this, I should be able to not want to fall asleep on my couch at 6:00, or I should be able to be happy and go out because I should be happy because at least I'm alive. And those shoulds are really harmful because they set up a false set of expectations. Most patients, especially with prostate cancer, they want to get on with it as quickly as possible. They want to be treated, they want to get on with their life. For people with advanced disease, that that life now looks different. So to Tony's point, men are not necessarily notorious for taking care of their own mental health, but that is where psychosocial support really comes into play. So one of the challenges is I speak a lot about sort of the toxic positivity around, like patients have to have a great attitude or you, if you just address it with, you know, keep yourself moving and eat well and have a great attitude, you'll have Better outcomes. That sort of implies that people who don't are somehow wrong. But that's where having some support helps. And if you're an advanced disease, you know, like that it feels like the goalpost is constantly being moved. And so I think what's really important and sort of my call out to care providers is those holistic things are part of the story, but mental health is at the crux of it. You know, cancer isn't the only thing that happens to people. They have whole lives that they bring into their cancer journey, and that can only magnify it. And so that's where advocates come into play and support, but also an understanding that if you're seeing a patient that is really struggling with those things, we've got to kind of back it up and think about the mental health first, because that's actually usually the key that unlocks some of the other things.

Dr. Ganesh Taylor (26:43)

I need to ask all three of you to sort of zoom out with me right now as we reach the end of this conversation. It's very clear from everything that you've all said that having a right support system in place is really vital. But as we sort of look towards the future and all the progress that has happened since, for example, Tony, when you got your diagnosis, even in 2017, my question here is basically, if you could improve just one thing about prostate cancer care for future patients, what would that be? Pedro, can you go first?

Dr. Pedro Barata (27:19)

Oh, that's a super important question. Right. We want to get rid of this. We want to eradicate. We want to have zero cases of prostate cancer, specifically advanced prostate cancer. So I think as we work on novel ways to get there, and until we get to the point where we get rid of prostate cancer and people can continue living their lives without it, we will always consider the work to be not done, not finished. So we are in an imperfect environment. Yes. A lot of progress has been made, and I think it's relevant to acknowledge that.

Dr. Ganesh Taylor (27:51)

Courtney, you've already flagged a few of the things. If you could improve one thing about prostate cancer care for future patients, what would that be?

Courtney Bugler (28:00)

Everyone would have an advocate that walks alongside them, because I think that you just can't do it alone.

Dr. Ganesh Taylor (28:08)

Fantastic. And, Tony, I'm going to give you the last word.

Tony Collier (28:11)

Thank you. I think the one thing I think that would improve things for future patients would be for healthcare professionals to remember not just to treat the cancer, but also to treat the person and treat all their holistic needs, and then also to remember that those holistic needs change as we go along the cancer journey, and my needs are very different now than they were eight and a quarter years ago. So treat the person, not just the cancer would be my urge. To healthcare professionals that brings us to.

Dr. Ganesh Taylor (28:48)

The end of today's discussion. We've heard how the journey through prostate cancer is never only medical, it is also personal, social and deeply human. From the first conversation at diagnosis, to the choices made about managing disease, to sustaining daily life, the importance of communication, empathy and truly holistic care has come through again and again. Many thanks to Courtney, Dr. Berata and Tony for sharing their insights, time and experiences with such honesty. And thank you for listening. This podcast was brought to you by Intelligence Squared in collaboration with Bayer. Sa.