Simplify Cancer

Isn’t it weird how everyone talks about mindfulness, but no one seems to know how to put it to work it in everyday life? And how do you even know that you’re actually doing it?

Many times I found myself staring into space in an attempt to find calm and relax, but no matter how hard I tried, my head swelled up with noise and random thoughts… Instead of enlightenment or clarity, I wound up feeling stupid and inadequate.

Is this what mindfulness really is – another fad when every day we struggle with distraction and overwhelm? I tossed mindfulness out to the waste bin until… One fine day I stumbled upon the book by Dr Ronald Siegel and it was mindfulness as I’ve never seen it before – grounded in the challenges of daily life and practical approach to making it work for you and your way of living.

Links

Dr Ron Siegel Website

And check out my brand new book on thriving in times of uncertainty:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

You don’t think about cancer when you’re young. Your hopes and your dreams they still lie ahead even when you haven’t found them yet… And that is why it hits you SO DAMN HARD. You never see it coming and what’s worse, neither does anyone else. Your friends find your cancer weird to talk about it, and no wonder – what do you say or do without coming off weird or insensitive? And how do you make sense of it all when you haven’t even figured out life yet? 

This is the reason why Geoff’s story is so vital. Having come face to face cancer as a young adult, Geoff found a way to get past the troubles and created an organisation to help young adults dealing with cancer. This incredible mission that Young Adult Cancer Canada (YACC) has not only helped Geoff heal, but has also inspired change makers to join and support the cause (check out the most recent conversation with cancer thrivers Gabrielle and Alex) and brought together thousands of young adults in the knowledge that they are not alone. Geoff is an inspiration and his message of finding meaning and connection is exactly what.

Here is the video version of our conversation:

Primetown: a virtual cancer summit for young adults and those who care for them

Young Adult Cancer Canada

And check out my brand new book on thriving in times of uncertainty:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy

How do you make sense of life after cancer? What are you even supposed to do with yourself after all of this? And how do you go on living and living well knowing that death is real? This is Joe Bakhmoutski and welcome back to the Simplify Cancer Podcast! I have a fascinating conversation for you today with the one and only, the incredible Dr. William Breitbart, the founding father of psycho-oncology. Here is what we cover in our discussion today:

The Redeemer of Grand Street by William Breitbart, M.D.

And check out my brand new book on thriving in times of uncertainty:

Full transcript:

William:                    Off the bat, I had thyroid cancer when I was 28 or maybe 29. I don’t remember how old I was. Yes, 28. In the middle of my medicine training. It was a rather quick experience. Surgery, boom, bang, out. That’s not what brought me into the field of psychiatric oncology. That’s not what brought me to Sloan Kettering. Believe it or not. It had more to do with my parents’ experience of being holocaust survivors as very young teenagers hiding in the forest and things like that and my experience growing up in that home with them.

The story of all of that. What my parents needed me to be in the world, so that it would justify the fact that they survived. That’s a lot of what drove me. If you Google search me and you look for something. I edit a journal, and international journey called: Palliative and Supportive Care. If you Google search my name and the title of an essay called the redeemer of grand street. You’ll hear my life story. You’ll hear that story. You’ll read that story. With all the typos I put in.

Joe:                             I will absolutely do that. That’s so fascinating, Bill. I totally get that what you’re talking about with what you wanted to be in the world from your parents. I have a similar sense of growing up with my grandparents who were also holocaust survivors. Both of them were medical specialists who completely went into this world of basically saving people. Just wanting to be that change. Yes, I think I totally understand that what you felt you had to be something in the world that made a difference in some way.

William:                    To make a very specific difference, yes. There were a whole group of I would say about 30 families on the lower east side of Manhattan who were survivors from the same general area of Poland, which is now Ukraine, whatever. From towns like Lvov, Bialystok, Turka. Places like that. They all organized together into what they called a Turka young men’s benevolent society. The main function of that society was to make sure everyone had a cemetery plot. We have a big section of Jewish cemetery out in Queens. Everybody from the lower east side that I grew up with, nobody had relatives, so we were all each other’s relatives.

My Bar Mitzvah, these were the people who came. The same thing with that. The main practical purpose was having cemetery plots. Obviously, it was a network to be able to stay connected. My mother in particular, my father was always working very hard. My mother in particular was a very philosophical person and a very emotionally expressive, thoughtful person. I think if she had the ability to have had her education not interrupted so seriously at a young age, she probably would have gone into something like medicine or something like that. She felt so guilty about surviving and everyone else dying. Everyone of her family died, that she would come up to me. Giving me and my younger brother breakfast every morning, she’d ask, why am I here? The more complete question was, why am I here and everyone else is dead? Why did I survive and everyone else didn’t? She felt a lot of survivors’ guilt. Either verbally, I think mostly non-verbally it became very clear to me that my burden, that I had to become, the burden for me was that I had to become someone who achieved something of such significance and impact in the world.

Particularly in the arena of suffering and particularly in the arena of how one can live a life in the face of death? How one can live a life knowing that they’re mortal and life just is so long? To be in that space between life and death and to have such an impact on the suffering that comes from that experience. That it would then justify my mother’s, my parents’ survival. I went to an orthodox Jewish school through eighth grade and then I escaped. My younger brother didn’t get a chance to escape because I took off my yarmulke and I started eating cheeseburgers and I started running after blonde girls in catholic school with those short plat dresses and things like that.

Yes. I wasn’t the only one who had this mission. A lot of kids who I went to school with had this same burden. For me, the burden was an inspiration. For some of my classmates, it was a crushing burden. I sometimes joke, I say, for those of us, it was an inspiration. A lot of kids who I went to school with who are psychiatrists, psychologists, great scientists, philosophers, creative artists, rabbis, very famous rabbis. Then the ones who were crushed, those were the kids who went on to become dentists.

Joe:                             Wow, that’s an astute observation.

William:                    Yes, poor guys, you know.

Joe:                             That’s an incredible thing to realise at what was a really young age. How did your perspective…?

William:                    I didn’t realise it.

Joe:                             You didn’t. You made sense of it with time, right?

William:                    Yes. I really didn’t know who I was and who I was trying to become until… what month is it now? It took a while. I was working at Sloan Kettering, doing research on drug treatments for depression, delirium, interventions for pain, fatigue. I had no idea what I really should be studying, what I came here to study was how people can live in the face of death or why someone would want to hasten their death, which led me to how does one deal with despair? After doing all of the medical psychiatric things in the interface of psychiatry and psychology, that’s when I started to get to the real reason I was there, which were the meta diagnostic problems. Not just you have this disorder, here’s this pill. It was more the existential despair. That’s when I finally started to look at it. That’s when I realised why I was there. That’s when I realized who I was trying to become. Why I went into all of this. I was trying to figure it out for myself, but I was also trying to fulfil the obligation that I have. This legacy existential obligation.

Joe:                             It’s fascinating that you talk about it as a transition, that you still had this internal compass that said even though maybe you didn’t have consciously the direction where you want to go, but you still went there.

William:                    Yes, because we don’t teach people. We don’t educate people in the right way. We educate people and our society is all geared toward what job will you do? When you’re at a party and someone asks, they don’t ask who are you? They ask you, what do you do? It’s really hard for people. People never really think about who they are, they think about what they should be doing. Now, if you’re lucky, what you do allows you to express who you are. A lot of people, most people don’t know that the real task in life is when you create a life, you have to create who you will be in the world. Who are you going to be in the world? What is your intention in the world? Who are you?

Then what do you want to do in the world? What job would allow you to express who you are and have an impact on the things that you care about as a who? If I talk to young doctors, young psychiatrists, young palliative care doctors in training. I sit with them to make sure that they’re not burning out because they see too many people dying. I meet with all of the palliative care fellahs in Sloan Kettering once a month. You ask them, who are you? They don’t know. Who do you want to be in the world? “I want to be a really good palliative care doctor.” I said, that’s a what. Who are you? They don’t know how to think in that way. We’re not taught to think in that way. We’re thought to think about what we should do. What role we play in the economy? What do I do to make a living? What do I do with my life instead of who I want to be in my life?

Joe:                             Yes. We’re not taught to reflect on our experience on what we do. Every week I talk to my grandma on the phone. She’s still alive. She’s an incredible person who’s still the sharpest mind possible. One of the things that comes up often, she’s 96 or something, one of the things she always tells me is, I should have done this. I should have done more with research. I should have pushed myself there. I was like, but, grandma, you have a diseased named after you. You’ve done a lot. You’ve helped so many thousands of people. She goes, “No, one thing you realise when you get to my age is all the things that you should have done.” I often think about that, Bill.

William:                    This is what’s called existential guilt. The idea that when you’re born and you start to grow up, a few hundred years ago, Kierkegaard hypothesised that human beings were the only form of animal, and he may have been wrong about this, at least it’s true what he said about us. We may not be the only lifeform that is capable of this, but human beings he felt were unique in that we had the ability to become aware of our own existence. That happens usually late childhood, early adolescence. Suddenly, you realise, I’m here, I exist. Then you’re overcome with a couple of emotions. Awe, it’s awesome to be alive, and dread. Oh my god. I’m a human being. Human beings die. You can die at any moment.

Human beings have responded to dread or death anxiety over the last several dozens of thousands of years by creating cultures. Most early cultures were various forms of religion. A lot of them were polytheistic and then there were just a few gods and not we’re down to religions with one god. We’re getting closer and closer to the truth. We keep cutting away the number of gods. These cultures basically help you with death anxiety by supplying the answers to the big questions. Like, where did you come from? Where was I here before I was born? What am I supposed to do here? Why am I here? What do I do now? Where am I going after I die? They supply some kind of concrete or metaphorical answer to these questions, all of these cultures. The other thing that happens besides this experience of awe and dread is you become overwhelmed with this sense of responsibility; how do I respond to the fact that I exist?

The responsibility is your existential obligation to your existence. Your obligation, the way you respond, what is my ability to respond to existing? I have to create a life. I have to create a life. I have to become a who in the world. I have to create a life that’s unique to me. Oscar Wilde said live your life, everybody else’s life is taken. You have to live a life that is not only unique but that you live to your fullest potential. A life of meaning, of direction, of self-efficacy, become a valued member in a culture and in a world of meaning. Things like that. You create a trajectory for yourself. you imagine an arc of your life. Shit like cancer happens that blows you off of that trajectory.

Also, things like that. Very few of us actually are able to live our lives to our fullest potential because the world conspires against us in all sorts of ways. It’s called existential resistance. The world makes it difficult. Shit happens. Like a World War II breaks out. Or there’s a pandemic. Or you get cancer. Or the economy tanks. All sorts of things happen that you can’t control. You don’t necessarily get to do absolutely everything. Even the extraordinarily accomplished people have what’s called don’t live to their fullest potential. That gap between what you think you should have been able to achieve and what you ended up achieving in life. Whether you lived to your fullest potential or got close enough or whatever.

Everyone has some sense of guilt, existential guilt that they didn’t quite do enough. Albert Einstein’s last words on his death bed were, if only I knew more mathematics. He’s basically dying, and he goes, “The theory of relativity was pretty good, but if I knew a little bit more mathematics, I could have done something even better.” Or at the end of Schindler’s List where Schindler is helping the Jewish workers in his camp who he helped, Liam Neeson is sitting there, dressed in prison garb and he’s overcome with the gratitude of the workers and they’re helping him escape before the Russians catch him. He breaks down and cries and says, “If only I could have saved one more.”

Even your grandmother, look back at her life. When you face death, it’s like a wall, it forces you to turn around and look at your life. The question is, can you accept the life that you live? That’s the real question. Not can you accept death, because your brain isn’t designed to just go ahead and accept death. Every neuron that says run is lighting up. Can you accept the life that you’ve lived and face death with some sense of peace and equity? Your grandmother has a sense of the finiteness of her life. She’s looking back. She goes, maybe I could have done more or this or that. Sometimes you can write that last book, or you can do that last experiment or something like that.

Ultimately, what it takes is forgiveness. To be able to forgive yourself for being merely human. Loving yourself enough to forgive yourself. Self-love is a very interesting topic. We human beings are imperfect and we’re fragile and we get cancer and shit like that. We can either be ashamed of it, or we can take another attitude of loving ourselves and being empathic of ourselves. When you realize that you’re imperfect, it actually teaches you empathy toward others. It’s what allows you to love somebody else. Empathy. As it turns out, nobody loves perfect people.

Joe:                             Wow.

William:                    I have had such a difficult time with women falling in love with me because of how perfect I was. I’m teasing. Nobody falls in love with a perfect person. They’re impossible to tolerate and actually, they don’t exist. You end up loving the flaws of a person. The tiny little imperfections. That’s what really gets the hooks into you. Actually, being imperfect is what allows you to love, and what allows you to be loved in return. It’s something to cherish and value and celebrate, your imperfections. It’s what makes us human and what makes our experience unique among all other animals. We’re living a very unique experience as a human animal. When we are living our lives as only a human being can, that’s when we feel full of a sense of meaning. When a woman is giving birth to a human baby, as only a human woman can give birth to a human child, that fills her full of meaning. When you’re sitting at the edge of the coral reef or you’re diving in the coral reef and you’re experiencing the grandeur of nature and stuff like that, you’re overwhelmed with the beauty of the universe.

You’re having a very different experience than the little fish who is swimming beside you. They’re not experiencing the coral reef with that sense of awe or joy or wonder, or connectivity to the entire universe. I usually use the Grand Canyon as an example, but I figured since you’re Australian, I should use the coral reef. It’s a very interesting thing being human. During the pandemic, it’s still difficult. It was a difficult experience. I was thinking about my parents an awful lot because what happened to my parents was at aged 14 for my mother, 17 for my father, they had to escape into the woods, into the forest. My mother and father were second cousins. They ran away and joined a group of partisan fighters and other families. They slept in the forest. They didn’t know when they were going to eat again. The forest floor was their bed.

They never had a shower or a change of clothes. My mother and father would have to sleep holding each other not to freeze at night, which is a good way to setup a 65-year long marriage. They didn’t know when some Ukrainian soldiers or German soldiers would come upon them and kill them. They didn’t know where their next meal was going to come from. I started thinking about their experience. At least I have my own bed to sleep in while I’m isolating. I have my own bed; I can take a shower. I can order food in. I have Netflix. I can work from home. It’s a very different experience. It was reminiscent of their experience. I remember one morning I got up and I went to the kitchen to get some coffee. I said out loud to my parents who are passed away now, I said, can you believe this is happening?

Of course, you believe it’s happening. It’s nothing compared to what you had. I was looking out the window waiting for the water to boil on my teapot. I was thinking, it’s an absolute randomness, the incredible odds against me every having been born or even existing were so stacked against me. All that needed to happen was for my mother or my father to make a left turn one day instead of a right turn and I would never have been here. Just the incredible randomness and the luck. The odds. That I would even have this opportunity to exist and have the experience of living a human life. Disney Land at the human life ride. Here I am. Why question it? Why question it? Why complain about it? Enjoy it. Go for the ride. Good, bad, all of the things that happen. Live it until it’s over. Go for the ride. Would you rather not have ever had the experience? Maybe. You’ve got it, you might as well live it. The biggest problem I find is living, being able to live despite the knowledge that bad shit can happen. The difference between you and me and most people walking the street who’ve never had cancer, or a serious illness is we have concrete proof that something life threatening that can kill us actually happened to us.

Joe:                             That is so true, Bill.

William:                    We fucking believe it, we know it. We believe it. For other people, it’s theoretical. It’s not theoretical. It’s real. The question becomes, how do you live with that knowledge? In the way you live, you try to live life as meaningfully as possible and with intention. A lot of people live their lives, they don’t know why they’re doing what they’re doing, they might be living unintentionally meaningful lives, but they’re also wasting a lot of time. You don’t have that much time to waste. The Seneca wrote a book on this, the shortness of life. His premise was, life isn’t that short, really, but we waste a lot of time.

Joe:                             That is so true.

William:                    Really. The real challenge is not how do you die? It’s how do you live knowing that you die someday? It can come at any moment. Some people think that’s worse than knowing that you’re going to die. The fact that it could come at any moment. I could drop dead before our Zoom call is over.

Joe:                             It’s almost a wake-up call. For me, it feels like the reality of knowing that I can die is my way into living into what could be called mindfulness because I realise that today is every single day that I’ve been given. If I’m stuck in traffic or if I’m in a place where I feel like there is too much going on and I’m busy. I remember, what if this was my last day on earth? What would I do now?

William:                    You’re absolutely right. It is a wake-up call. Sometimes I describe it as you need to know your destination before you chart out the course of your life. It’s like if you’re in a car and you’ve got a GPS system and you’ve got one of those things on your phone, the first thing you need to enter to plot out the route is the destination. I was once in a rental car, early days when they had GPS in the cars. It was a voice. The GPS voice was a woman’s voice. Where would you like to go? I put it in. It gave me a choice; would you like to take the fastest route there or would you like to take the scenic route? I want to take the fastest route. I want to go straight to death. I don’t want to meander.

It’s like a GPS in a car. It helps you plot the direction of your life. It helps you understand. There was some TV show on cable TV, HBO called Six Feet Under and this family, the father owned a funeral home and he died, so the sons had to take it over. They don’t know anything about this funeral business. The young man who died who’s married to this young woman. She’s crying and talking to one of the sons. She says, “Why is there death in the world?” He said, “I don’t know, I guess so we know how valuable life is.”

Joe:                             That’s exactly right. It teaches us about ourselves.

William:                    Right. When you’re creating a life, you’re not creating jut any life, you’re creating a human life. You’re creating the life of a human animal, which by definition is finite vulnerable and involves both developing an attitude, a relationship, a connection to the awe and the dread of life. The living, the fact that it involves creating connections in that relationship and attitude toward living and also the possibility of dying at any time. You have to develop an attitude. Most people don’t even think about that in creating their lives until they’re confronted by something. Like what you or I were confronted by as relatively youngish people.

Yes. I remember one time 30 years ago; I was called in to do a consult on a patient and it was a 65-year-old man had prostate cancer and he virtually said this to me. He said to me, “Dr. Breitbart, up until I was given this diagnosis of cancer, I never once thought of death in my entire life.” I said, what? He said, “I never thought of death.” I said, you’re kidding me. That’s impossible. “I didn’t really. I’m 65, my grandparents are still alive. My parents are still alive.” Something like that. He went into his father’s business and he made that business. He never wanted for anything. His life was like an MTV video. He never really had any hardship. He never had a pet that died. Nothing. I don’t quite believe him. Imagine. Living most of your life not even with the thought of death. On some level, I envied him. I would have had a lot of really good restful nights. Just saved up the worrying for the last period.

Joe:                             That’s something that we are all confronted with as we go through cancer. We go through this trajectory. Whether we have been thinking about death or dying or whether we haven’t. We’re on this trajectory. We’re going. All of a sudden, whether you hit a wall.

William:                    You get knocked off. This guy was on a trajectory that never got disrupted. He never thought of death. It was really very interesting. I suppose there was no drama in his life. It was a comedy. I was a chemistry major at pre-med going to med school. Then I was also an English major with a concentration in writing. Poetry writing and playwriting. Mainly poetry. My playwriting teachers would say, “Bill, I hear you’re a very good poet.” The way you create drama, you take the arc of the character, which is the trajectory an then you put some obstacle in the arc of the character. Boy meets girl. Boy falls in love with girl. Girl falls in love with boy. Boy loses girl. The drama is falling off that arc and then finding some way to reconnect or even transcend that original arc to something even greater than you had imagined you could become, which is your life and my life.

Joe:                             That’s exactly right. How do you do that with people who feel they’re going through this transition and they feel lost, and they feel unsure about themselves and how to make sense of things?

William:                    Yes. That was my question. That was the biggest question I had about 15 years ago. I started seeing people, I’d come into the room and I’d say hi, I’m Dr. Breitbart, your oncologist asked me to come in to say hi and see you. They’re a little bit concerned that you’re a bit depressed. Is there anything you think I can help you with? This one guy said to me. He’s a Chinese fellow, he was a scientist himself. He said to me, “You want to help me?” I go, yes, I’d love to be able to help you. “If you want to help me, you’ll kill me.” I said, why is that? “I’ve got such and such cancer. I’m going to be dead in three months. I see no reason, purpose, meaning, value in hanging around. If you want to help me, kill me.” I didn’t have an answer right away.

I probably said something like perfect, you’re the perfect kind of guy that I can help. At that point, I had been dealing with other patients like that, I started to look at research that looked at what makes people want to have desire and hasten death. I found that depression, about 50% of people who speak like that guy does are clinically depressed and haven’t been treated. I did studies looking at treating depressions, desire to hasten death goes away. That’s only 50% of these folks. He wasn’t clinically depressed. If he wasn’t depressed, why else? We did more research. We found that there are a couple of things. Lack of social support. Extreme pain. Things like that. What really popped out was loss of meaning and hopelessness. Synergistic independent.

I went searching for some kind of intervention to help with loss of meaning. It’s interesting now that I have a few colleagues and friends who are doing psilocybin research.  It seems to have some effect on that. I’m involved in some of their studies now, I wasn’t in the earlier studies. I turned to the work of Victor Frankl who you may know, a man’s search for meaning or whatever. I took some of the basic concepts of Frankl’s work and I developed something called meaning-centred psychotherapy for cancer patients. It’s a brief seven-session intervention. It works very well. You have to want to be able to do it. You don’t have to necessarily do the structured intervention.

I’m so familiar with all the elements of it, I could do it at the bedside in one session. I look for that existential guilt. I look for who they are and if you identify yourself and your dignity as residing in who you are as opposed to what you do and what you’re capable of doing. In ways of who you are being as opposed to what you can do. What’s very interesting is who you are doesn’t quite change. If you’re a loving person before, you’re still a loving person.

Joe:                             Is it about reconnecting with that?

William:                    Absolutely. It has to do with these various understandings of the importance of meaning and being able to actively go search for creating it and re-experiencing it because you’ve lost it. Knowing that there are certain sources of meaning that you can go search for. You take a tree that’s routed in the ground. That tree is completely dependent on the universe and the weather for its existence. It doesn’t make chlorophyll unless the sun comes out. It doesn’t get water unless it rains. Birds can come by and peck on it and all sorts of diseases can come by and squirrels can inhabit it and all of that. It’s very passive.

It can’t go, get up, and get the things it really needs to really nurture itself. We human beings are different than trees. We are actually mobile. We can go and search for the awe. We can search for the meaning; we can search for awe. We can search for joy. We of course are like trees in that we are subject to what life brings us, what our inner bodies do to cause us to stress and despair. What the world brings us in terms of service and difficulties. We have the ability to respond. To choose how we respond. Both in terms of our attitudes and in our behaviours.

Joe:                             How do you guide that? It’s really hard to navigate at the best of times, particularly when you are face-to-face with mortality, with the fact that you could die, or you know that you are likely to die? How do you reattach that meaning and how do you go about that search?

William:                    Part of it is an intellectual process and if you have lost that ability to think, it’s very hard to do that. Ultimately, what it boils down to is emotion and love and connection. If you can experience that, that is meaning in the most basic, elemental form for human beings. When my father was dying, and I was sitting at his bedside and I was holding his hand. He looked at me and he recognised me, and he said, “My son is with me, I can die now.” That was a meaningful moment for him. He experienced meaning in the very last breath he took. It’s emotion. Love. It’s corny. It comes down to love, doesn’t it? It’s corny.

Joe:                             Exactly. Love. Sometimes love is a guilty feeling. Especially when it’s self-love.

William:                    Yes, which is so hard.

Joe:                             Where do you stand on self-love? Is it even okay to do?

William:                    It’s probably the most important thing you can learn to do in your life. It’s the most difficult. It’s the most important. That’s what allow you to forgive yourself for just being human. If you don’t love yourself, it’s harder to forgive yourself. I have a son who I love unconditionally. I know what unconditional love feels like. I know my mother and father loved me unconditionally. I once asked myself, does my son love me unconditionally? Did I love my mother unconditionally and my father? Certainly, I had my battles and all that to get my independence. Ultimately, I loved them unconditionally. I loved who they were, not what they were, but who they were. If there’s only one thing I know about who I am, I know that I’m the son of Rose and Marge Breitbart. That’s the only thing I’m sure of in the world. Everything else is probably imaginary. I wonder if my son loved me unconditionally. I asked him, he said he did. It’s hard to believe that someone loves you unconditionally. I try to believe it.

Then I said to myself, look, I helped create this incredible human being, that’s not too shabby of an achievement. Just for that, I achieved a creature who is unconditionally loved. That’s not a shabby thing to do, so maybe I deserve a little bit of love for myself. I didn’t do a bad thing there. There’s something about that. For me, it’s still the hardest thing to forgive myself. Even during this pandemic, you write a book or something like that. I wrote three fucking textbooks. One of them is 100 chapters long, weighs 10 pounds. It’s the bible of my field. I wrote the fourth edition of it. I took over writing it from my mentor who died three years ago who wrote the first three editions. When it came out, I felt nothing.

Joe:                             Why is that?

William:                    I enjoyed the process of doing it. I loved every minute of the process of doing it, but once it was finished, it wasn’t like that was the goal. The goal was creating it. Once it was done, that wasn’t the achievement. The achievement was all of that work that went into it before it got printed by the publisher. It was really competitive. We’re competitive creatures.

Joe:                             In the work that you do, will there ever be a point where you feel like this is enough. I’ve done what I’ve had to do?

William:                    When I was 50 years’ old, I had a birthday. My mother wrote me a birthday card. She wrote in the card, she said, we’re so sorry, we know that growing up we had such extraordinarily and impossible expectations of you and what you would achieve in your life, but you’ve surpassed them all. Please, stop. Relax. You’ve done enough. You don’t need to do this anymore for us. She was aware of this burden she gave me. I turned to my mother and I said, “Mom, I stopped doing it for you quite a number of years ago.” I stopped doing it for you. It’s very hard to stop. One can reach a point where you have a sense that you perhaps achieved something of some significance, and you can look back at it and feel a sense of pride and a sense of completeness in a way.

I’ve trained myself to be someone who is constantly trying not to waste my life. The time of my life. I enjoy so many things that give me a sense of reward and meaning. I love writing. I love music. I love writing essays and poetry and things like that. I love thinking of ideas for research and I love teaching. Those are things that I probably would never want to stop doing. There’s a difference between feeling that you may have achieved and there’s a sense of completion of your life’s work. I did something significant, but I think for me and I don’t think it’s that healthy really, even, to stop being alive and living meaningfully. That’s what I worry about in terms of retirement. People work and then they retire. They retire to sit and wait for death, which is not a fun thing to do.

Joe:                             I find it fascinating that you had this insight, which I think is very powerful. That you’re doing this for yourself.

William:                    I’m not doing it for you, I’m doing it for me. In other words, it’s mine. It’s who I am, I’m not doing this to fulfil your dream only, it’s my dream too. It’s who I am. It’s my intention. It’s not necessarily done for me. It’s done as an act of generosity and love and healing for the world. I get rewarded, but it’s not like I’m trying to accumulate stuff. I own it.

Joe:                             Exactly. There’s a sense of freedom in that, Bill. I remember talking to my wife about going through cancer. I remember going and telling her through difficult moments, I almost in a way did it for you because I wanted to be with you and with our son. Then something made me think, something she said, made me think and realise, I was doing it for myself. Yes, I wanted to be there, but something around that was I was doing it for myself. Just to even admit that, it was hard, but it made me more free because it felt like now it’s okay to do things that I feel are right for me.

William:                    A lot of what’s necessary in living is to try to, under whatever circumstances you are, to remain and to preserve your authenticity as a person. to remain authentically who you are. That’s the part where you come in. I have to be me. I’m doing this to sustain who I am, me. Who you are is someone who loves their wife and loves their child or children? These are the more precious people in your life. These are the most precious relationships in your life. They help define who you are too. You’re authentically a husband, a loving husband, a loving father, part of a family. You’re part of something greater than yourself. You are a part of this family that you’ve created. You didn’t just create your life; you created a family. You create new life. You created a future.

Joe:                             Exactly. Do you think that’s something that then is also a part of creating meaning, is being something that is bigger than yourself?

William:                    Absolutely. Connection is a big source of meaning. You can be connected through love, through all sorts of ways. Connected to people you love, people in your family, your friends and all of that. You can be connected to your community. Connected to your past, the future. You can be connected to something greater than yourself. That’s transcendence.  For some people it’s a relationship to god, being connected to god. For other people, it’s being connected to something that’s even more significant than just me. It’s my family. It’s something that I believe in. It’s the legacy of my family. It’s the idea. For me, it’s the science of my work. It’s the impact of my work, whatever.

Joe:                             You mentioned god, it made me think of when I would be in my oncology ward. Someone came in, I don’t know for whatever reason. They said, “Would you like to see a rabbi?” I remember thinking, I said, no, because I thought, does this mean that I’m dying? All sorts of weird things came up. What would I say? A part of it, this whole idea of being in some way having that feeling of discomfort with religion or spirituality or finding a place within that, what does it mean for you? Is it even helpful?

William:                    What does what mean to me? Spirituality?

Joe:                             Spirituality, yes.

William:                    For me, spirituality is any experience that a human being engages in in trying to understand their place in the universe. That’s Carl Sagan’s definition. Anyone human being who contemplates their place in the universe is engaging in a quintessentially spiritual experience. I would say it’s even a religious experience in the sense of the word religion comes from the Latin - to tie together. It’s all about trying to make sense. How do I tie together the big questions? Where did I come from? What am I doing here? Where am I going? Whenever you do that, you’re actually making the infinity sign. That’s for me what spirituality is. It’s also the mystery. I don’t know the answers. I’m a scientist, but I don’t know.

There are people that taught me as a young child who had all of the answers, but for somehow, someone told them exactly how the universe was created and what happens after you die. They were authorities on this. From a book. A whole little religion that was created. I wasn’t that old before I figured out, this doesn’t make a lot of sense. What I do know is, I don’t know. I have a pretty good idea, but it’s mysterious. The only solace I take within that mystery is infinite possibilities. Judaism is a very interesting religion in the sense that it doesn’t have as much emphasis on heaven or afterlife as Judaism version two, Christianity and all that kind of stuff. Actually, a lot of people mistakenly think that Jews don’t believe in heaven.

Apparently, we do. We have that pretty worked out, as well. It’s not like heaven is our reward. In Judaism, life is what’s precious. You hold onto it every moment. That’s why I have 98-year-old rabbis that are intubated on ventilators and nobody wants to let them die. He has to live ever last second that god intended. Life is the precious thing. Not the afterlife. This is the adventure.

Joe:                             I’m fascinated when you said infinite possibilities. What does that mean for you?

William:                    It means, I may be surprised.

Joe:                             In a good way.

William:                    In a way I didn’t expect. Yes. In a way I didn’t expect. Physics is kind of interesting. There may be a parallel with quantum physics and string theory. Me at birth exists somewhere right now in a different space-time slice. It’s very complex. I don’t know what to expect. I expect nothing. Nothingness. In physics, the big bang was created out of nothing. What they’ve discovered is that nothing actually has a few things in it. There were a few particles of something in nothing. I don’t know. A lot of possibilities. I don’t rely on them very much, that idea. I don’t rely on it very much. Another Greek philosopher, Epicurus. He had this idea of something called symmetry. The idea is that wherever you’re going after life. Yes, once life is over and you die, you’re probably going to be in that same state or space or whatever that you were in before you were born. There’s a symmetry. Before death, after death, it’s the same space.

I don’t spend a lot of time being freaked out about where was I before I was born? I do spend a lot of time being freaked out about what happens after I die. I say to myself, before I was born, I was not in despair or distress. I wasn’t trapped some place. Existence was no painful or distressing in any way. Maybe that’s what it’s going to be like, like before life. My mother used to say something to me every time we were at a funeral. Over the years, we went to a bunch of funerals. We were at the cemetery and the person being buried and we were walking back to the car. My mother would find me, or we might be walking together already. She’d grab me, she’d hug me, she’d hold me very close. She’d say to me, “Don’t be afraid of death. Death is normal. It’s natural. It’s part of the cycle of life. Everything is born and lives and dies. It’s natural. Don’t be afraid. At least today, it wasn’t you or me, sweetheart.”

When we buried my mother, I grabbed my son and I held him close to me and I repeated the same thing to him. At least today it wasn’t you or me, sweetheart. That’s my religion. My son was eight years old. We sent him to Jewish Hebrew day school. Synagogue. Which we stopped going to as soon as his Bat Mitzvah was done. He said, “God watches over every human being in the world, right, dad?” I go, yes. I think so. He says, “There are billions and billions of people in the world, aren’t there?” Yes, I think there are billions. “I think there are several billion people.” Yes. “God has to keep track of every single one of those billions and billions of people.” I go, I guess so. “You think there’s any chance that he might not notice me, and I won’t have to die?” I said, I think there’s a chance. Let’s hope he doesn’t notice both you and me.

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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Today, I am talking to Carly Flumer about advocating for your health during cancer. Carly shares her approach to share your story and get the support that you want on social media. I wish I thought of this when I was going through cancer – oh Carly, where were you then?! Here is what we cover in our discussion today:

Carly Flumer on Twitter

Symplur Healthcare Hashtag Project

Carly Flumer on Instagram

And check out my brand new book on thriving in times of uncertainty:

For man with cancer:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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Today, I am talking to my favourite cancer thrivers and fellow podcasters Gabrielle and Alex about making sense of life beyond cancer.

Alex and Gabrielle speak to the challenges we all go through, but always looking forward, towards the future and making your difference on your terms! And you can’t get enough of that, can you? Here is what we cover in our discussion today:

Let Go of Your Shit: A Guide for Young Adults Affected by Cancer on Amazon

Let Go of Your Shit: A Guide for Young Adults Affected by Cancer on goodreads

Soar Above Cancer podcast

And check out my brand new book on thriving in times of uncertainty:

For man with cancer:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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Today, I am talking to my friend Lee Silverstein of WE Have Cancer about finding yourself again beyond cancer to live a happier, more fulfilled life.

I love the way Lee looks at life – and he never looks back! Here is what we cover in our discussion today:

Full episode transcript (PDF)

Check out brand new book on thriving in times of uncertainty:

For man with cancer:

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with prostate cancer with our special guest is Professor Jeff Dunn, Chief Executive Officer of Prostate Cancer Foundation of Australia.

Jeff is an expert in cancer control and has helped to create better supportive care and quality of life for those with prostate cancer.

Here is what we cover in our discussion today:

Full episode transcript (PDF)

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Joe:                             Jeff, thank you so much for being here.  I’ve been really looking forward to talking to you.  Welcome to Simplify Cancer Podcast.

Jeff:                             Thank you, Joe, it’s my pleasure.  I certainly appreciate the invitation.

Joe:                             Jeff, you’ve done so much, so many fantastic things in the world of prostate cancer.  I wanted to ask you first, Jeff, what is different about men facing cancer?  Do we have different needs?  Do we express things differently?

Jeff:                             There are some differences.  By in large, and as a generalisation, people talk about men being more problem focused than women.  Men will collect information to try and solve a problem.  Women, once again, this is a generalisation, people talk about women being more interested in that connection, in that communication style of coping strategy.  Look, there are differences.  As an overall comment, I’d say that cancer patients, irrespective of gender are not passive recipients of support.  When faced with a life-threatening disease, people, men or women, will make choices based on the information at hand and have personal preferences about how they receive information, support, and services.  It’s a difficult one to generalise, Joe.

Joe:                             Yes, absolutely, Jeff.  When you’re diagnosed with cancer, it just flips your entire world upside down.  Jeff, what would you say to someone who has been newly diagnosed with cancer and may be struggling to really come to grips with their disease?

Jeff:                             Joe, first up, for someone who’s newly diagnosed, the message is, from all of our evidence and all of our research, that most people do well over time.  It gets better.  Not for everyone, but for most people.  I think that’s the important message.  If you’re newly diagnosed and you’re finding that you’re working out how to deal with this, seek out information for a start.  Find information.  Be prepared to talk to other trusted friends, if you want to.  Certainly, do talk to people.  Use those supports that are around you.  For many of us, there are supports around us.  You can always go to reputable sources.  If it’s cancer, cancer councils or Prostate Cancer Foundation Australia, or Carers Australia, or the National Breast Cancer Foundation.  You can find these sorts of reputable organisations.  Of course, your healthcare team, certainly talk to them about how you’re feeling, to your general practitioner, or if you’re seeing a psychologist or whoever, but talk to them about how you’re feeling and how that’s going.  Remember that there are things that can be done to help.

Joe:                             Yes, I think that’s such a huge point that you make, Jeff, about really exploring all sorts of different possibilities to get help.  It shouldn’t be just one thing, but there are so many options.  I think the more tools you have to help you get through it, the better it is.

Jeff:                             Look, without a doubt.  That’s what I always say, people seek out things that suit them, each of us have different ways of coping or gaining knowledge or making decisions, of assessing choices.  It’s important that we look at providing just an answer or not just one option, but a multi-layered suite of potential responses to provide for individual needs.  Remember, those needs vary over time.  What people need at the point of diagnosis might well be different to what people need six months and twelve months down the track.  Once again, it depends on their cancer, on their diagnosis, on their treatment, on their own makeup, on their family, on their community, on their sociodemographic, on their financial needs.  All of these things play a role and it’s complex, but it’s important that we understand their things we can do, and things can get better.

Joe:                             Yes, exactly.  As you say, Jeff, we have different ways that we respond to thing.  Really, as a behavioural scientist and a researcher in cancer control, what would you say are your observations about how cancer impacts people in a different way?

Jeff:                             We’re all different.  When you think about people’s response to cancer, it’s about individual responses.  It’s about the psychological makeup, it’s about their social response to their communities, about how they’ve grown up.  Their sociodemographic situation.  Their ethnicity, their cultural backgrounds.  All of these things impact.  They all influence.  They all mediate response.  Of course, there’s no one thing, which, again, points to the importance of looking for a range of responses, a range of channels for patients who are diagnosed, so that we put them in the middle of this and provide them with options to make choices in ways that best suit themselves.

Joe:                             Yes, that’s great, Jeff, because it’s all about knowing that options are available and then choosing what’s right for you.  Jeff, I really remember going through cancer and thinking, this is cancer.  It’s supposed to be hard.  You get caught up in your experience.  Sometimes it doesn’t occur for you to seek help.  How do you really know that you yourself might be struggling with something and you might need help?  Is there an objective measure to get a handle on stress?

Jeff:                             Joe, there are a couple of things and thanks for sharing your story and you’re right.  A cancer is a life-threatening disease.  When someone’s diagnosed with cancer, it’s usual to be concerned about that.  To feel a threat.  It’s okay to be a bit concerned and worried and those sorts of things.  People need to understand that.  It is a threat to wellbeing, and everyone responds to that differently.  In the early stages, of course, it’s about understanding what means for you and how you cope with it.  In terms of objective measures for assessment.  Look, it’s not unusual for people when they first get a diagnosis, their sleep patterns are disrupted, they might be a bit more irritated than they usually are.  Their concentration might be reduced.  I think what’s important for people is to be able to assess or think about when those sorts of things get to the point when they have a significant or meaningful impact on their lives or on their relationships or on their work.

They are the points in time where you might actually start to put your hand up and say, maybe I need to talk to someone about getting some advice or support or assistance or starting to talk to others certainly about that.  From a professional point of view, health professionals, we have some tools we can use now and one of those is a distress thermometer, which we’ve been putting in place and trying to understand a standard care when a diagnosis of cancer is being made, so that health professionals themselves have got an objective measure when it comes to trying to assess how people are coping from a psychological, social, and emotional point of view.

Joe:                             Yes, that’s fantastic, Jeff.  Tell us about this distress screening tool.  How can it help me, or others diagnose?  How can it help when you’re struggling?

Jeff:                             I think when we’re talking about people’s emotions and their feelings and anxiety, they’re abstract sometimes, aren’t they?  They’re difficult to actually measure specifically.  It varies so much across people.  The distress thermometer is a very simple point scale, one to ten.  It’s accompanied by a symptom checklist, so that we can actually go through specific items that might have an impact on that person.  Essentially, we’re asking people, on a scale of one to ten, how would you rate your level of distress right now.  We know from all the evidence that it’s validated, that it works.  We know that people who score four and above are more at risk for ongoing distress and anxiety.

By putting the distress thermometer in, we have an objective measure.  Particularly for health professionals in this sense because it starts the conversation.  If you have something like a distress thermometer, you say to someone, let’s talk about that now, and someone has a rating of four or above, then you can start that conversation.  These sometimes are conversations that might not happen unless you had something like the distress thermometer in place.  We see a whole range of benefits coming out of this and once again, we know from all the evidence that it makes a difference, and it will work.

Joe:                             That’s fantastic, Jeff, because it leads you on a path to discover and I think what I really love about it is it helps you to self-identify some of those problems.  It’s the patient who’s saying, “Listen, I’m maybe struggling in this area.” As you say, this can lead in the treating doctor to ask more questions and to help them deal with it, right?

Jeff:                             100%.  It starts the conversation.  Sometimes, as I said, these conversations don’t get started and the thermometer provides permission for both the patients and the clinician to actually talk about things.  You start with an objective measure that says, today, I feel pretty distressed.  I’m a six or a seven.  There are things that can be done that provides a clinician no advice.  The clinician then can work with the patient and take the necessary interventions or make the necessary referrals if those are necessary.

Joe:                             Yes, absolutely.  Speaking of that, Jeff, really, we’re talking about many different approaches to psychological treatment, with people experiencing cancer related to stress and worry.  If you’re going through cancer and it’s getting a bit too much, where do you turn?  Do you look for a psychologist?  Is it a psychiatrist, is it a council?  Who’s going to help you?  Also, how do you know who to trust and who’s advice you should take?

Jeff:                             Terrific question.  Come back to basics, in the first instance, talk to your doctor.  Identify reputable sources.  Once again, cancer councils, or Prostate Cancer Foundation from reputable sources.  Health department sites, where they will provide information and talk about options.  If you talk to your doctor, you can get referrals to psychologists or psychiatrists, if necessary.  Each of these professions.  Councillor, psychologist, psychiatrist each have a role to play and in somewhat different ways on occasion.  They each have a role to play.  Once again, your general practitioner or your family doctor or reputable organisations will be able to help direct you in that regard.  I think it’s important to understand that once again, there’s no right answer here, Joe.  I think for patients out there, it is a matter of saying, I think I need to talk to someone.  If you’re not sure where, go to a doctor, go to your GP, or go to a cancer council or prostate cancer foundation helping, if it’s a prostate cancer, for example.  They are the people you can start.  Then you start to get the referral points out.  Depending on what your particular needs are.  That’s important to assess, as well.

Joe:                             Yes, absolutely, Jeff.  Let’s say you do get directed to a specific professional, you spoke to having different needs and preferences.  How do you really know that this is the right person for you?  Like, just in the way that speaks to you on a personal level.

Jeff:                             It’s critical that you can speak with these people on a personal level.  There’s a concept called therapeutic alliance, which is crucial in these aspects, which is how the patient and the clinician connect.  It’s very important.  If you’re seeing someone and you’re talking with the clinician via GP or a psychologist or a psychiatrist or a counsellor, you’re not actually resonating.  That person doesn’t seem to be on your wavelength.  It’s okay to actually recognise that and then you get a referral to someone else because depending on the individual therapy or the particular approach or the clinician or whatever, they will take their own approaches.  As we spoke about it earlier, patients aren’t passive recipients of support.  We actually make decisions on the value of things based on how well they resonate and connect with us as individuals.  If they’re not doing that, it’s important to find a source of support that does resonate with you.  You can ensure that that therapeutic alliance is working well.

Joe:                             That makes so much sense to me, Jeff.  It’s okay to seek a different opinion or a different perspective.  Someone who you really might gel with better.  It also raises a question in my mind, Jeff, when it really comes to seeing a psychologist or a counsellor.  Sometimes you don’t really know what to expect.  Especially if you might be already in a high level of distress, you might be dealing with cancer.  Is it going to feel unnatural?  Are you going to get asked personal questions that you maybe don’t want to answer?  Do you see that as a problem, Jeff?

Jeff:                             Again, it comes back to fit in that alliance.  Psychologists will have their own way; each psychologist will have their own way of approaching a person’s needs and delivering therapy.  So will each psychiatrist and so will each counsellor and so will each sports and exercise physiologist.   It’s a matter, again, for the patient in that circumstance to make assessments about how well that’s working for them.  To be prepared to acknowledge when it’s not and to seek alternatives.  Professionals, whether they’re psychologists or psychiatrists and others will have, in most cases, the ability to adapt and to assess and to measure in that relationship, whether they’re connecting and change styles to suit.  In the end, if it’s not working so well, you need to actually look somewhere else.  It will be personal questions, but it’s about how they’re put.  It’s about the level of comfort you’ve got with that person, about how it’s introduced.  Then, again, about what’s done with your answers?  Again, it speaks to the importance of the relationship between the clinician, the therapist and the patient.

Joe:                             That’s a great point you’re making, Jeff, about the fact that if you’re a professional, you can change styles and adapt.  I think that’s a really important point to note, because sometimes it’s easier to talk to a psychologist or a counsellor, as opposed to someone who’s already a part of your life, like your partner or a friend, because they don’t know you, but they know how to listen and they know how to approach different situations to help you through it.

Jeff:                             100%.  With friends and family members, there are some things that you talk about openly.  There may be some issues and concerns and fears that you can use that objective assessment of a professional, whether it’s holding up a mirror and allowing you to process some stuff, or to take you through a particular process in a logical sequence to arrive at a decision.  That is important and is not something that family members are well placed to do.  Maybe because family members and friends, they care about you.  They love you and they’ll say things to you and for you and with you and do things which are all about support and care, without that professional structure to guide some of that intervention.  Of course, we all go back to our personal life, perhaps there are some things that you want to talk about which you want to keep personal to you and perhaps professional and not raise with family members.  There are differences.  Families and friends provide fantastic support.  In many cases, it’s all patients will need, and they’ll work through and process it themselves.  On occasion, there are some interventions which can be professionally delivered.

Joe:                             Yes, absolutely.  I think you know the more help you can get, if it works for you, I think the better it is.  Jeff, when we look at our society and I think it relates to some of the things that we’re talking about now because of the complexities involved.  It sometimes seems to me that we try to find simple solutions to what maybe be complex and multi-layered problems.  Where do you think we should place our focus?  What should our priorities be in this instance?

Jeff:                             Joe, you’re right about society.  It’s changing, isn’t it?  It’s complex.

Joe:                             Yes.

Jeff:                             I have to say, sometimes the simple things are the best.  I’ve seen it happen.  The warmth of a touch or the openness of a smile, the touch of a hand can sometimes has a profound effect on how people are feeling and how they respond.  Sometimes going for a walk just to clear your head can do terrific things for your affect, for your mood, for how you feel about things.  Simple things can and do make a big difference.  We mustn’t lose sight of those.  Let’s remember that they can be critical.  Having said that, depending on an individual’s experience, there are some things where coping becomes tough.  Some cancers have morbidities and side-effects that challenge over time.  Over long periods of times.  People’s response can vary and so, again, it’s important to understand that close personal support networks are critical.  I addition to that, a range of programs and services, again, where we have referral options for patients, depending on their need and their preference, will make a difference.

Joe:                             Absolutely.  That’s fantastic, Jeff.  Listen, I know you launched a new psychosocial model of care for men with prostate cancer.  Tell us, what led you to develop the model and how does it work?

Jeff:                             Well, we were working on the distress thermometer, of course, as we’ve discussed already.  Once we published that and we have a positioned statement on screening for distress, I think it was important then that we had a look at all of the evidence about potential points of referral.  We produced a monograph on psychosocial care.  Look, essentially, it’s a self-help book for professionals who are dealing with cancer.  What we’ve done, we’ve gone through and we’ve identified all of the potential interventions or all of the evidence-based ones.  We summarise those to provide advice, evidence-based advice to clinicians who are working with cancer patients.  It runs all of those things.  It covers things on exercise.  We mentioned, by the way, exercise is a very important intervention and there is a lot of evidence for it, just to keep active, it’s very important.  Positive behavioural approaches.  Stuff around psychosocial education, education work, coping skills, training, problem-solving.  A whole range of things we’ve included in that monograph.  That’s available for health professionals when they’re working with cancer patients.  It’s proved to be very useful.

Joe:                             It’s great I think, Jeff, that it’s got what you’re talking about.  It’s essentially a toolkit with your different tools that you pick out and to apply, to help people wherever they’re at.  It could be multiple things.  Someone might need help with exercise, or they might need some kind of therapy and it really depends, it really sounds like something that you can suit to a specific situation.

Jeff:                             Exactly right.  Once again, sometimes it’s the simple one.  It’s having a supportive family network.  Or it’s talking to someone else that’s shared that experience.  Peer support.  For many cancer patients, peer support is the preferred method of support, what is of greatest benefit to them is actually talking to someone else who’s been diagnosed with that cancer and has gone through that experience and can validate their feelings, can share their experience and can make them feel that they’re not unusual, as they face what’s ahead.  It’s important that there’s a whole range of these.  They’re not all complicated psychologist or psychiatrist delivered complex interventions.  Or they’re not all about pharmaceuticals about drugs.  There are a whole range of things that we need to keep in mind.  Some of them are about that simple human connection.  Information and connection as well as some of those more professionally delivered ones.

Joe:                             Makes so much sense, Jeff.  I want to just touch on the support groups that you brought up because I think that’s such a hugely powerful tool and ways for people to see help.  As you said, it’s really filled with people who know exactly what it’s like.  For me, I joined this online support group.  I know that for me it made a huge difference because it was really filled with people who can identify with your experience, who can really get you.  In my experience, it has been not only really helpful, but it also is something that can help partners, as well, right?  For example, you could be going through cancer, it could be great for partners to talk about their life, in general.  You don’t have to go and specifically hear things that might be really personal to you, you can just talk about whatever you feel comfortable with.

Jeff:                             100%.  Peer support.  Whether it’s one-on-one, whether it’s one connection or whether it’s going to a group meeting.  Whatever it is, it’s a powerful piece of therapy.  There are things that a peer supporter can do that a clinician or a psychologist, no matter how well-trained they are, can never do.  It’s that shared personal experience, which is such an important ingredient.  Unless you’ve gone through that journey, as you’ve just said, it’s difficult for people to validate someone’s experience.  If you’ve done it yourself, you can share that.  There’s a level of understanding.  The mechanisms we try to understand, but that shared personal experience is something very precious and peer support as we’ve just been talking about is a very important channel for people diagnosed with cancer.

Joe:                             Absolutely, Jeff.  Speaking of the power of experience, did you think any of that, the challenges that we go through for those of us with cancer, are there any challenges that are kind of unique to us here in Australia, do you think?

Jeff:                             Look, we’re all people.  We get diagnosed with a life-threatening disease, of course that’s a challenge for us, then our cultural, our ethnic backgrounds.  Our psychological makeup, our social circumstance, all of those sorts of things will help mediate that response.  In Australia, we share with some other countries.  Our geography can be a challenge for some, for sure.  We’ve got people in remote communities, we do know from our research and evidence that sadly even in Australia, our country, our regional friends, colleagues and family members don’t do as well when a diagnosis of cancer is made.  For a whole range of reasons and some of which we’re still struggling to understand.

Geography is an issue.  Certainly, we have vulnerable populations, like other communities and countries in the world too.  Some of our indigenous Australians, some of our migrant populations with language barriers.  We have those issues, as well, but we’re not unique in sharing that.  Countries all around the world have their own particular issues.  What’s important is to try and share the knowledge globally so that we can all work out what works where?  How do we make a difference?  Then make sure we apply that as can in each of our own communities.

Joe:                             Yes, absolutely, Jeff.  I guess that also speaks to what we touched on earlier, is that there are so many different aspects around it, and we want to be able to manage them well, just in terms of specific situations.

Jeff:                             Exactly right.  I think we as a community need to just understand that, certainly the health professionals in our community need to understand that.  We just need to look at ways.  For us, a big issue right now is how we share the benefits of our technology equally throughout Australia.  Why is it that regional cancer patients don’t do as well?  What do we have to do to make sure that they share in the benefits of technology and communications and research, as well as people living on the eastern seaboard or in southwestern Australia around Perth?  Those are the sorts of things that we’ve got to address along with others, of course.

Joe:                             So true, Jeff.  Speaking of different perspectives and the way people perceive things.  I was reading a research paper called: Not all prostate cancer is the same.  I was really struck by the significance of just how diverse prostate cancer can be, just in terms of its aggression and how we need to look at it through the perspective of supporting really the patient’s wellbeing and really making decisions about their treatment.  What’s your perspective around that?

Jeff:                             You’re right.  Not all prostate cancers are the same.  There is lots of work going on to try to better inform how we identify different types of prostate cancer.  Those which are slow-growing and are really not going to do much, best to leave them alone.  Then those which are aggressive and there are differences.  Of course, overlayed on that, there’s a whole range of treatment choices for prostate cancer.  There are decisions to be made.  Again, what’s critical is for the person with prostate cancer, the man on this occasion, the person with prostate cancer being close to their clinician, to their general practitioner and to their healthcare team to gather information.  That’s really important, to get good information.  To have a good relationship with your healthcare team and make sure that you cultivate that, so that you can get support in making decisions and making choices, so that you have the best quality choice you can with the information at hand at that time about your treatment.

Joe:                             Yes, absolutely.  It’s all about choices and that’s something that continues to come up in our conversation.  That makes a lot of sense to me.  Listen, Jeff, I know that one of the areas of focus that you have is really survivorship.  Do tell me about what some of the latest research is that you’ve done around that.  What does it really mean for a man with prostate cancer?

Jeff:                             Joe, I’m glad you asked that question.  Survivorship is critical.  Just to put it in perspective a little too and I’ll talk about Australia at the moment, our figures, but in Australia, we have some of the highest incidence rates of prostate cancer in the world.  The highest numbers.  The two biggest risk factors still for prostate cancer are age and family history.  In Australia, there are more men and we’re all getting older as a population.  The numbers of men dying with prostate cancer in this country in terms of absolute numbers is going to increase.  There are going to be more and more men out there with prostate cancer.  The flipside, happily, in Australia again, for example, our survival rates, five-year survival rates is a statistic.  We spoke about this earlier, Joe, but I’ll use one now, our five-year survival rates which is a benchmark we use to see how well we’re going, our five-year survival rates are among the best in the world, as well.

We’re world-leading in that because our clinicians, our doctors, our nurses, our allied health people, the health system is doing a great job.  It means that we’ve got more men being diagnosed and we’ve got more men living longer.  Much longer with this disease than they ever were.  Survivorship has never been more important.  We’ve got more people out there that are living longer after a diagnosis of prostate cancer and for some of them, of course, there will be ongoing issues to do with physical side-effects, sexual function, incontinence, pain, as well as social/emotional/psychological side-effects, potentially.  While it’s important, it’s critical, we want people with prostate cancer to live longer.  We want to make sure that we improve life expectancy, but we also want them to live well.

That’s where the survivorship comes in.  To make sure that they live well, quality of life.  We’ve been working hard on that.  We’ve developed new support and a lot of consultation with clinicians and survivors and partners.  Prostate cancer survivorship essentials framework, which has identified six key elements of survivorship.  What’s important in this new framework is the role of personal agency, which is in the middle of it, which is about an understanding by the prostate cancer survivor themselves.  The man in this case understanding there’s actually a role for that in this and not to be passive and to help understand how personal agency can improve that survivorship experience for people after diagnosis.

Joe:                             It’s so crucial that you bring it up, Jeff, because this personal agency really to me speaks to that crucial feeling for a man is really to feel like they’re in control of their life.  To feel that they’re making active decisions.  They’re doing something.  Earlier, as you were talking about having the problem focused approach, to feel that you are doing something in order to have the life that you want.

Jeff:                             100%.  That’s right.  We spoke about that earlier.  There are things that we can do.  There are things that individuals can do to understand what’s going on around us.  That issue about personal agency, the connection with the healthcare team.  Understanding the information, being a part of that decision-making process.  Trying to influence that in ways that would actually reflect your own personal preferences and approaches can make a difference.  Personal agency is a concept that we’ve added to the framework.  It includes health promotions.  Looking after yourself.  Evidence-based interventions.  If you’re going to try and do something and seek our ways to improve your own quality of life, it’s important to look at ones where we know there’s evidence.  There are a lot of things out there, but we’re not quite sure they all work.  Vigilance.

There are things we can keep an eye on, for the healthcare team and for the person.  If you’re meant to be going and having tests, we’ve got to make sure the healthcare team, even things like distress.  Check on people’s psychological wellbeing from time to time from a vigilance point of view.  Care coordination is crucial, too, Joe.  Making sure that everyone is a part of that care program or the healthcare team actually coordinates so that men get the right care in the right place at the right time and don’t fall through the gaps, which is critical, as well.  The other thing we’ve already spoken about is that shared management.

It’s a partnership between the patient and the healthcare team and their families and who’s got what roles where and how you ensure the best possible outcome for people.  We have a framework for survivorship with personal agency at the centre and we’re actually promoting that as a way for policy makers and health systems, for clinicians and for individual cancer patients and their family members to approach survivorship care.

Joe:                             Yes, that makes total sense, Jeff.  It makes me also think back on what we talked about earlier about partners, because I often feel that sometimes partners don’t get the recognition or the support that they truly deserve because we don’t look at them because they don’t have the cancer.  Yet, they are often doing so much work and supporting their loved one through cancer.  I know you’ve done a lot of work on researching the impacts on all that cancer can have on partners and the community, as well.  Tell me more about how cancer can impact that around us?

Jeff:                             Well, Joe, you’re 100% right again.  For example, we need to understand that cancer impacts that individual who’s received the diagnosis, of course, but it has significant impacts on partners and families and close friends and relatives.  Sometimes on whole communities.  We’ve seen stuff where a much loved and respected community members have got a diagnosis of cancer and it’s impacted whole communities.  It’s important to understand that.  We know from research, for example, female partners of many cancer patients actually report higher levels of psychologist distress than the person with the cancer themselves.  This may be mediated a bit by gender differences and how women tend to express distress, but it reinforces your point.  That a cancer diagnosis needs to be seen as having an impact beyond the person themselves.  There are, once again, support services and programs that we can work with and encourage coping, effective coping for partners.  The first step is to acknowledge and recognise that this can be an issue, that is does happen.  That’s where awareness out there is critical.  Partners and families 100% are impacted by a cancer diagnosis.

Joe:                             Yes, absolutely, Jeff.  We also talked about some potential challenges that we might have here in Australia and that might be with just how geographically diverse we are.  It also makes me think about technology.  How can we harness technology in a way that really helps to connect people with support that they need?  If so, how can it do that?  Are there any barriers you have observed to take that up, really?

Jeff:                             First up, technology, we’ve been using it for a while in different ways.  For example, we’ve had telephone-based peer support programs for some time.  We know they work, and they’ve been out there, where we connect via telephone, people who have had a cancer experience with newly diagnosed people.  All of the evidence and evaluations, it’s a truly good invention.  We’ve had telephone-based nursing stuff.  You will have heard about telehealth and telemedicine and that was all commencing and in play and doing well.  It’s a critical part of service delivery without a doubt.  Notwithstanding all of the impost and the troubles caused by Covid-19, perhaps a silver lining to some extent is it has fast-tracked our approach to delivery of remote health services around the world.  We know now.  It’s normalised remote delivery of services much more quickly than probably would have happened otherwise.  It was probably going to happen, but it’s happened much more quickly.

We see much greater acceptance now and a much greater prevalence of remote delivery services via telephone, via websites, via webcast, or via all other sorts of technologies.  People’s willingness to accept them, experiment, try these has also improved.  It’s given permission to people to try these things.  We know they work.  Can I just tell you, for example, we’ve done research some years ago now and there is plenty of evidence out there to support this that telephone-based psychological services by a trained psychologist for most patients can deliver the same therapeutic impact as a face-to-face psychological intervention.  Now, there are always exceptions.  There are going to be certain circumstances or issues or challenges or problems which we better deal within a face-to-face environment.  That is always going to be the case.

Do you know what?  There are a lot of things that we can deliver remotely, and we know that.  As we’ve said, in Australia, that will be a relief for our friends in the regions who won’t have to travel long distances.   My only warning about this is, once again, there are some things, particularly depending on the diagnosis and depending on issues that people are facing, there are some things that will always require face-to-face interaction.  What’s important for us is to recognise that for most people, we can address their needs in different sorts of ways and then we can continue that referral process.  If people need more face-to-face activities or more intensive stuff, then we can at least identify them through that screening process and then start that referral process to make sure that they’ve got the service they need.

Joe:                             Absolutely.  I’m so relieved to hear what you say about the efficacy of remote services like over the phone or video because not only for the regional people who are living in the regional areas, but in the times that we live now, with the pandemic, where in many ways, we are forced to be in our homes or not travelling and getting that quality support, whether that’s a psychologist or something else.  I think it’s so crucial.

Jeff:                             It is.  We are facing an awkward period.  We’ve not experienced this before as a community.  It’s important that we as a community look to build on those interventions and approaches and channels we’ve currently got which allow us to get to people remotely.  At the same time, look for new and innovative ways to deliver services.  We need to focus on that.  That’s got to be a priority for us.  It’s good to see that the community at large is embracing that, and the health professionals too are committed to patient welfare and they’ve made it a priority.

Joe:                             Fantastic, Jeff.  Thanks for sharing that.  Jeff, I heard that you’ve recently been appointed president elect for the union for international cancer control.  Congratulations, Jeff.

Jeff:                             Thank you, Joe.  Yes, well, it’s terrific.  The UICC is a global peak body for cancer control organisations.  It’s based in Geneva.  It’s been around for 85 years.  It was founded in 1933.  It’s a terrific honour for me.  Can I say, Joe?  It’s an honour I need to share widely because I’ve been in cancer control for three decades now.  I’ve learned every day from friends and colleagues and professionals that I come into contact with.  Most importantly, I’ve learned lessons every day from interaction with cancer patients and their family members and friends.  These are the lessons that motivate me and inspire me to continue in this line of work.  This UICC appointment, I’m delighted with it and I’ll be using it, I can assure you and your listeners, to leverage everything I can to improve cancer control outcomes in Australia, but, of course, more importantly, globally, as well.

Joe:                             Yes, that’s fantastic to hear, Jeff.  Congratulations on that.  What are some of the things that you hope to achieve there?

Jeff:                             This year around the world, they’ll be about 18 million people diagnosed with cancer.  It’s a big number.  This year, around the world, they’ll be about 9.5 million people die from this disease.  That’s a tragedy and we need to do something about that and we’re working at it.  Those numbers, as we look at them now, they’re going to go up.  For example, we estimate that by 2030, which is 10 years down the track, that 9.5 million deaths each year will be 13 million.

Joe:                             Wow.

Jeff:                             That’s another 3.5 people every year who’ll die from this disease.  As we’ve spoken about, that 3.5 million mothers or fathers or sisters or brothers.  That’s 3.5 million additional people.  We need to work on these things.  The concerning stat is that of that 13 million deaths we’ll see in 2030, about 80% of those will be in low to middle income countries around the world.  There’s a job to be done in equity.  There’s a job to be done in sharing the technology, in sharing the benefits.  That remains an issue for the UICC and do you know what?  We spoke about it earlier, it’s still an issue for us in Australia too.  How do we bring together that global community, that global cancer control community to make sure that we fund the right research, and we share the benefits of that research well?

That we improve treatments and make them readily available no matter which country you live in.  Those are important issues for us.  Another important project we’re looking at.  We’re working very closely with the World Health Organisation on the elimination of cervical cancer program.  Can you imagine that a world that’s free from cancer of the cervix?  This is something we’re actually looking at.  It’s something we’re working towards.  It’s a possibility.  We’re delighted in that.

Joe:                             That’s fantastic, Jeff.  So relieved to hear that you’re tackling these huge issues around cancer.  Thank you for doing that.  Thank you so much for being here, for sharing your perspective and your expertise, as well.  Thank you, Jeff.

Jeff:                             Thank you, Joe.  I appreciate it very much.

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with cancer during the pandemic, coping with uncertainty, and reducing the risk of severe infection.

This is particularly crucial in the time of COVID-19 pandemic. Our special guest is Dr Christopher Steer, a medical oncologist who specialises in helping older adults with cancer, and here is what we cover in our discussion today:

Full episode transcript (PDF)

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Joe:                             As a medical oncologist, I know that you are deeply involved in cancer treatment, in follow-ups, in research, in clinical trials, Christopher, what impact have you seen with the pandemic so far?

Christopher:            We have a large number of patients from regional Australia coming to receive standard chemotherapy and immunotherapy and radiation and follow-up in our centre.  Of course, patients need to travel to have their treatment to our centre.  That is the first issue.

As you may also be aware, patients with cancer tend to be older.  The average age of patients with cancer in Australia is 67 years at first diagnosis.  That means a significant number of our patients are older.  Here we have a large number of patients older, having to travel to our centre for treatment.

I would say rightly so, that because our patients are going to be at risk of more severe infection should they contract the virus.  We need to remember that we’re all at risk of contracting the virus and the only thing that we can do to prevent infection and not be infected by it is not to be infected with it.  The only thing that we can do is practice social distancing and good hygiene.  Good hand hygiene and other practices that we’re all well aware of now.  There is no prophylactic treatment.  There’s no treatment once we get it.  We need to remember that the only thing that we can do is practice good physical distancing and hygiene.  What does that mean for our patients coming to the cancer centre?  They need to visit us as a centre and that would be mean coming in contact potentially with other people.

Certainly, for the patients with treatment, that’s unavoidable.  We don’t currently have a service where they can have treatment at home.  For the patients who aren’t on treatment, of course, we have pivoted to tele-health as much as possible.  We’re providing telephone and video consultations for our patients as much as possible.  As a regional cancer centre, as a medical oncology unit, we are quite used to doing this already.  Tele-health is a core part of my business model if you like.  Tele-health is a core part of my care.  I conduct it with my patients regularly.  What can we do for our patients?  We can stop them coming in to seeing us.  If they do need to come in for treatment, of course, we need to change our management here.  How are our patients feeling?  They are in the majority fearful of this infection, rightfully so.  Most of them are doing the right thing by staying at home, if possible.

Joe:                             Absolutely, Christopher.  There are so many challenges that the pandemic brings, as you say, how people are taking it in terms of their attitudes, in terms of the risk and in terms of how you treat them.  There is also, Christopher, so much that we hear about Covid-19 in the news, what is your take and what does someone who’s potentially going through cancer treatment and going through follow-ups, what do you think they absolutely need to know about the disease right now?

Christopher:            Unfortunately, as we are seeing an increased number of patients with Covid-19, mainly in Victoria, the thing that our patients need to know in this regional cancer setting is the likelihood of them having infection is low, but it needs to be thought of.  If they are worried, they should get tested.  If they have any symptoms, they should get tested.  If they are in contact with someone who has it, obviously, they need to go into two weeks of quarantine.  For patients who example on treatment, we need to be aware that often treatment does cause immunosuppression, that means lower immune systems.  We think, we’re not entirely sure, but we think that this may lead patients to be at increased risk of severe infection.  What we’re mainly concerned about for our patients is what is the risk for severe infection?

We know that tends to be older adults.  We know that mainly men are more of a concern.  More men than women develop severe infection.  We know that if you have core morbidities, such as diabetes, high blood pressure, heart issues, you’re more at risk of an infection.  We think that immunosuppression and having cancer itself is something that puts you at high risk.  Therefore, we are very cautious with our patients.  However, the fear of the severe infection should not put us off adequate, appropriate anti-cancer therapy.  I think still in the current situation that people are more likely to run into trouble with some of their cancer sometimes than from a severe covid-19.  As with everything, it is a balance.

We need to weigh up what the risks and benefits of the treatment are in this new environment with every patient that we see.  It is important to individualise care.  One of my mantras in dealing with my older patients is, adequate assessment yields appropriate care.  For our older adults, we know that a geriatric assessment leads to a better and adequate care and supportive care.  I think in this new pandemic, in this new environment, it’s very important to adequately assess our patients to individualise our care and make the decisions together.

Joe:                             Yes, that makes so much sense, Christopher.  I love how you put it into perspective that while there is a great risk and with restrictions potentially changing depending on where you live, we should always be safe and mindful of what we’re doing and practicing everything that government and our health departments are recommending.  It’s so important to put it into perspective and to find that right balance between minimising the risk but yet, at the same time, getting the proper care that you need when it comes to cancer.

Christopher:            That’s right.  Our public health experts are giving us the right advice.  Following that advice is important.  Unfortunately, the new lockdowns and border closures are important parts of managing this condition.  When patients are on what is often the most difficult journey of their life, they do not need yet another obstacle.  I think it’s important to know that a, you need to follow the advice of the experts, and that I would support the public health initiatives being taken in place.  Also, that as specialists, as cancer care specialists, as cancer care teams, people like us at our teams at the cancer centre are here for our patients.  If you’re in doubt, ask, call, but don’t just stay at home and wonder.  Get advice if you’re worried.  Ask questions.  It’s very important.  We will try as much as we can to be here for you.

Joe:                             Absolutely, Christopher, that makes so much sense.  What types of questions would you encourage patients to ask you or their own specialist in this time?

Christopher:            Often, the most difficult time for our patients, as you’re aware, is their first visit.  You’ve been diagnosed with cancer, the surgeon, the general practitioner has made the diagnosis and the patients come to the oncologist in the cancer centre for answers, reassurance and treatment.  The first visit is so important.  It’s where the relationship is established.  It’s where the plan is made.  It’s where the patients find out really what the problems are hopefully.  That is the most important time.  My patients need to come into my office.  Hopefully with somebody else.  The first thing I would say rather than what questions to ask would be, make sure there’s someone with you, if possible, who can help you ask the questions but more importantly, remember what the answers are.  I’ve had one patient today say, well, you should have someone to join you to help ask the questions and listen to the answers and then another person to write them down.

The team, now, we have a team to care for you, but often it is the team of the family or the spouse or friends.  Sometimes a neighbour.  Someone who’s there for you as part of your team.  If you’re a patient coming for the first appointment.  I can’t stress it more often.  My heart sinks when I got to the waiting room, I call a name and one person walks on their own to my office and they don’t have someone with them in support.  That happens for many reasons.  Sometimes there is nobody to support the patients.  Often down this very difficult journey, you need help and support, and I would say it’s really important to have someone with you.  Yes, they can ask questions, they can listen to the questions and write it down.  Write down your questions before you come in, if possible.  There are a number of different sites.  The Cancer Council provides a good list of questions for your oncologist before you come in.  What kinds of questions should you ask?

Of course, what cancer do I have?  What is the stage?  What are the treatments?  Really, it comes down to what my answers are.  What are our options?  What are our options for treatment and care?  Usually, I would go through those including ones which people might think are possible, for example, surgery, even when the situation is not operable.  You need to say, yes, we would like to do surgery, but for this reason, we can’t.  Things like that.  Go through every option that the patient might think about and then hopefully they will leave the appointment with an informed opinion about the way forward, a proper plan.  Then someone who’s also witnessed that, and they can talk to them on their way home afterwards.  That’s what I see as some of the vital things that happen at that really important first appointment.

Joe:                             It’s just such a critical thing that you raise, Christopher.  I remember when I went to see my oncologist for the first-time getting treatment, I have almost no recollection of the first conversation whatsoever.  I was just happy that I did have my wife and my mum with me to be there and support me.  Also, just figure out what we need to do next.  I’m really glad that you’re bringing this up.  Christopher, is there anything that you think at this time, as well, that people want to be asking yourself or the specialist with respect to follow-up appointments or treatment with the pandemic?  How does tele-health work?  How does all of that fit in?

Christopher:            People often ask, what can I do?  What can I do to help the treatment?  What can I do to stop the cancer coming back?  Certainly, one of the things that I say to my patients in advising them about whether or not they should have treatment at all.  First of all, follow the experts and have the treatment if that’s the best thing for you.  Then if you are on treatment, or even just in follow-up, what can you do in this pandemic to help yourself and avoid the infection and avoid the seriousness?  Of course, follow the advice of the experts as we’ve said.  Physical distancing, meaning staying away from people.  Hand hygiene.  Other things, when there are areas of high community transmission and masks may well be something that we would be recommending.

Currently, it’s not standard and there’s a lot of debate about that.  If you apply masks with, and this is cloth masks, not the full-on respirators, but cloth masks with physical distancing.  Then there are some studies to suggest that that is something extra that you can do to first of all stop you from getting the infection, but if you do have it, if you’re unfortunate to have it, then you can stop it from passing onto others.  There is evidence that masks help, but only in certain circumstances.  They’re currently not recommended in general hospitals, for example, here in the regions, in our cancer centre where there is no community transmission.  There are simple physical things.  Unfortunately, there are no drugs you can take.  People say, could I do anything to boost my immune system?

Well, exercise, diet, get plenty of sleep.  These are simple lifestyle things that you should be able to do to boost your immune system.  I do not think that there is any evidence that there is a medication, unfortunately, so-called natural remedies as something you can take to boost your immune system.  There has never been any trials or science to show that is possible.  Simply lifestyle factors, such as good exercise and sleep and having a good diet would come under the heading of doing everything you can.

Joe:                             Yes, absolutely, that makes perfect sense, Christopher.  I really like how you speak plainly to it and I think this is what we all need to hear.  What are some of the things that I guess older people need to consider as they adjust to life after cancer diagnosis?

Christopher:            Our older adults and for this we’re talking about often patients over the age of 70 years, let’s say, for example, are at risk of developing cancer and then once they develop cancer, often due to the presence of core morbidities and other issues, risk from the complications of the treatments and are at risk of having more problems with just the cancer itself in many ways.  Despite that, as I say, if we assess outpatients adequately and adequately manage their core morbidities and give appropriate supportive care, I do not think that older adults should be denied appropriate treatment, even curative treatment.  A difficult treatment if they’re fit enough.  We should not treat our patients on the basis of age alone at any time.  Yes, people who are over the age of 85/90 are often frail, but not always.  Frailty as a concept is something we could talk about at length and fits into the assessment scenario.

In general, our older adults need to be treated with respect and treated appropriately.  Now, what can our older adults with caner actually do to help themselves through their journey?  First of all, they have some support, ask for help if needed.  There’s so many supportive medicines and things that we can give to try to get through the treatment toxicity, such as good anti-sickness medicines, as you’re well aware.  Medicine sometimes for the bowel problems that people sometimes get on anti-sickness medicine.  There are things we can give to help them through the journey and though the side-effects. We can give things; we can do things to help our older patients through their journey.

Then, of course, there are the teams.  There are supportive care teams.  Nurses, the allied health social workers, the teams of people often in the cancer centres who are there just to help our older patients.  There are regular GP visits, for example.  There’s keeping everyone in the loop and keeping the supportive care team together.  Then what can you do for yourself as an older adult?  Well, keep active, keep healthy.  Keep exercising.  Now, that is difficult in times of social distancing, and physical distancing, but keeping active is crucial.  At the same time, of course, in this pandemic, unfortunately, keeping away from other people as much as possible is difficult.  Here we have a number of challenges, but there are certainly many things we can do.  Where can you go for advice?  Well, as I say, the cancer council helpline is something we would recommend, but there will be a local cancer care coordinators, often oncology nurses, your doctors, and your GPs who’ll be able to provide you with good solid scientific advice to help you on your journey.

Joe:                             Yes, absolutely, Christopher.  I think it speaks to a lot is finding the courage to speak up and ask questions.  I remember from my own experience that it really mirrors exactly what you are talking about, that there is a lot of potential side-effects, which can be managed or helped when you ask the right questions of the oncology nurse and you try to understand what’s happening or when you maybe try to ring up your specialist and say, hey, what’s going on here, so you’re able to really understand what is happening.  That takes away a lot of the worry, a lot of the fear.  Whether you are in active treatment or maybe you’re living with cancer or perhaps even when hopefully you’ve passed active treatment and you’re in the survivorship stage.  Do you notice that that gives people a greater sense of control over their lives or to restore some of that calm, do you think?

Christopher:            That is such an important issue.  I think the sense of control.  Patients who sit in my office talking to me, they are often faced with something for the first time in their lives, they cannot control.  The cancer is often something that you can’t just wish it away and you can’t control it without help.  Sometimes even without treatments, they prove to be uncontrollable.  That is a very important concept, which we do need to recognize.  I think it goes back to what we might have said earlier about what patients feel they can do and against the cancer or more so for themselves to help feel like they might bring some control back into their lives.  Be it exercising and feeling better and getting fitter enough to have that treatment.  Simple things like that.  Something which will give them more control over this journey that they’re on.  I think that is a vital thing.  Other experts can help them bring that control and even help them through look at what’s important for them would be psychosocial support that the experts in the cancer centres can give.

Now, unfortunately, our wellness centre here at the hospital is closed.  Now, this is an important organisation formed by the patients with volunteers but through community support, they’ve been able to fund, for example, a full-time psychologist, who is so busy helping each individual patient through their journey from a psychological perspective.  The concept of psychology and that effort of support is so important.  Our community has recognised this.  Unfortunately, our health service is unable to fund it fully and so, through amazing donations from our local community, the organisation that runs a wellness centre is able to fund a full-time psychologist.  We really need two in our centre.

Of course, with the pandemic, the problem is that face-to-face visits are somewhat difficult, but our psychologists have also pivoted to tele-health and that has been very effective and she continues her really important work in our region to look after the mental health of our patients as they go through their journey.   It’s very important.

Joe:                             Absolutely, Christopher.  I couldn’t agree more.  I remember when I was in my oncologists’ office and he laid out different treatment options.  He said, we can go with chemotherapy, we can go with radiation.  Here are all of the pros and cons.  Have a think about what you want and then you can decide.  I was like, how do you expect me to decide?  I’m just some guy.  You’re the professional.  They took me a while to really come back to understand how empowering that is for the person who is dealing with cancer themselves to make decisions because I think it gives you some measure of control and it speaks to what you’re talking about, to what matters to you.  What is important to you and to your life?

Christopher:            That’s right.  These decisions are important, but as you rightly say in your own circumstance, they can be overwhelming.  If possible, I try and give my patients a framework in which to base their decisions on.  Listen to them carefully, try and determine what matters most.  Equally, they often provide more options.  It’s a really complex decision and I come back to the first consultation issue that we raised in the beginning.  Sometimes the things that matter most to the daughter of the patient is different from what matters most to the mother who is the one facing the decisions.  You have to factor in these complexities in the family relationships and the different people in the room when you’re guiding people through these difficult decisions.

That can be overwhelming but are really important because we’re talking often about people with incurable conditions who are going to be certainly my patients for the rest of their lives.  I need to get to know them and help them through these at times overwhelming decisions.  These are in ordinary times very difficult to make.  Here we are in Covid-19 pandemic when we’ve got to work out whether our treatment puts the patients at more risk of severe disease.  Yes.  My other thing that I say about older patients with cancer is, these things take time.  I cannot rush these kinds of decisions.  Sometimes you need more than one visit.  It takes time to assess our patients adequately, give them the options, listen to them and then finally find the right treatment path for the individual who’s with you.

Joe:                             Christopher, what about the cancer survivors?  Are they at a greater risk of being impacted by Covid-19?  What is the greatest impact or consideration there?

Christopher:            Joe, how do you define a cancer survivor?

Joe:                             Cancer survivor, I would define it as anyone who has finished active treatment.

Christopher:            Yes, so there are a few definitions around this, which is why I ask because some people think that a cancer survivor, your survivorship journey starts when you’re first diagnosed.  You’re a cancer survivor from day one, very important to have your flu vaccination, so you don’t get another infection to put you more at risk of the issues with Covid-19.  That comes back to doing everything you can for yourself.

Then as you go out and your immune system is picking up and you’re seeing the doctors less, really.  Often, the situation is you’re back to relative normal from a Covid-19 severity perspective unless those things you’ve got you can’t control.  Like, you’re older, you’re a bloke, you’ve got other core morbidities, any of that stuff happens.  Then yes, you need to stay away from the risk of getting it as much as possible.  Then we have visiting the hospital less and using telehealth to stay at home and have your care.  We’re here for you, even after you’ve finished your active treatment, make sure if you have a problem and a question that you seek help either through the GP or directly with our clinic.  If you have a question, don’t be scared of it because we’re here to help.

Joe:                             Absolutely.  Christopher, how important is it to get tested for coronavirus if you do feel unwell?

Christopher:            Yes, well, the current advice in the Australian context is that testing is vitally important.  That testing is available.  Testing does not cause significant side-effects in the self, if you like, it is uncomfortable.  It is a very long cotton bud, if you like shoved to the back of your nose to get those important cells at the back of the throat, which harbour the virus if they’re there.  You’ve got to get an appropriate sample.  It’s not comfortable.  However, it’s important to have the tests.  The current advice would appear to be that if you have any symptoms at all concerned, then have the Covid-19 test.  It’s vitally important.  Don’t come to hospital if you feel sick.  That sounds weird, doesn’t it?

Joe:                             Yes.

Christopher:            Ring first.  Don’t just share it around.  Think about it.  We’re going to have to think about this very carefully now.  I take part in a survey every Monday morning.  It’s a flu survey.  It’s an influenza symptoms survey.  I’d have to check the actual address because in my mind, I don’t have it.  Every Monday morning, I get asked a series of questions and there are 70,000/80,000 people who are involved in this survey every Monday morning.  It asks whether you have a sore throat, temperature, cough.  It’s usually used for influenza monitoring.  You can see in previous years; the influenza has been quite high.  This year, with all of the physical distancing, the rates of the normal influenza are really low and the rate of the symptoms around Australia and New Zealand are really low.

It shows the power of physical distancing to avoid these kinds of symptoms and these kinds of illnesses.  I think the other side of that is, when is business as usual and we all go to work with a bit of a sniffle, with a bit of a cough or feeling unwell.  Business as usual says, you’ll be right.  Well, we show that it’s very easy to pass on these kinds of respiratory illnesses to each other.  The rates of infections are quite high.  That’s part of what we’re used to.  Maybe that’s going to change in the post-pandemic era.  Who knows?

Joe:                             Yes, that might be one positive thing that comes out of this, is how do we manage it going forward?  Christopher, what are some of the best ways, I know we kind of touched on some of that already, but what are some of the best ways to keep yourself in good shape during the pandemic, especially if you’re an older person who’s living with cancer?

Christopher:            Once again, Joe, I think we need to think about this in a physical fitness and in mental fitness.  How do you stay in shape physically and mentally?  Such a great question.  Like cancer care, it’s individual.  It depends on who you are, how fit you are already, and what you like and what type of person you are and what kind of support you have, where you live?  These kinds of things still of course need to be factored in.  I find it interesting that in these studies of exercise in patients with cancer, often it’s the patients who are the frailest who benefit the most.  They’ve got the most to gain.  It’s the most interesting when we look at these studies of exercise in people before a big operation, for example.  In studies of pre-habilitaion rather than rehabilitation.  We find that it’s the patients who are almost most at risk that have the most advantage.

Another thing, don’t just assume that if you’re frail you don’t benefit from it.  Even simple exercise, such as strengthening the core muscles, for example.  I think activity is good, certainly not being active is better.  I think how you keep in good shape, clearly staying physically active, eating the right things, getting enough sleep, that’s important.  Then mentally, as we touched on, it is going to be hard on everyone.  Some of these catchphrases, like we’re all in it together, well, they’re okay to be said, but really when it comes down to it, there’s an awful lot of loneliness out there, ordinarily.  There’s an awful lot of people now having to stay alone, unsupported and fearful of any physical interaction.  This is an awful and interesting new time that we find ourselves in.

Mental health and support of people mentally through as many avenues as we can is vital.  There’s probably a lot of trials looking at this.  I know psych oncology is a really important area that we touched on already.  Psycho-oncology in the Covid pandemic becomes so much more important as we all battle through this individually with or without our support.  We need to be agile but also remember that we will sure be able to continue care for our patients as much as possible with as much continuity as possible and given the care that they need despite these challenges.

Joe:                             Thank you so much, Christopher.  Thank you for your time.  Thank you for just what you do in the world in supporting cancer patients and cancer survivors in such a difficult time.

Christopher:            Thank you, Joe.  Pleasure to be here.

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In this episode of Simplify Cancer Podcast, we are talking to Damien Bolton, a clinical professor at the University of Melbourne and head of Austin Urology Unit here in Australia.

Damien is passionate about improving quality of life and the outcomes for patients with prostate cancer, and here is what we cover in our discussion today:

Full episode transcript (PDF)

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Joe:                             Damien, I was really struck by the significance of this paper that you wrote called: Not all prostate cancer is the same.  Even the name alone: Not all prostate cancer is the same, Damien, what does it mean to you?

Damien:                    I think there’s a key message in there that’s apparent in the title.  Prostate cancer probably more than most cancers varies enormously in terms of its aggression.  The vast majority of prostate cancers of course are the types of tumours that we can just keep an eye on and observe and that won’t need aggressive treatment.  The small number that do in turn give that group a bit of a bad name.  Most men who get diagnosed with prostate cancer will have early curable treatment and treatment that doesn’t need intervention at all.  There is this small number that present with widely advanced disseminated disease that will be fatal to them.  Our message is to try and bring that group forward in the diagnosis to when the tumour is either easily treatable or can just be followed expectedly with the understanding that men will not die of the cancer if it’s identified at that point.

Joe:                             Exactly.  It seems like there’s a lot of misunderstanding from what you’re saying around this prostate cancer.  Damien, what is the most misunderstood belief around prostate cancer?

Damien:                    That misunderstanding is definitely true, and you are forever influenced by the people you know who’ve had prostate cancer.  Traditionally, we’ve seen old men die a painful death, have a long and infirm course with their prostate cancer.  It’s probably the recognition of these men that gives rise to this main misconception.  I think the main misconception of prostate cancer is that if you’re diagnosed with it, you’re going to have a painful death from secondary disease in your bones, or alternatively, you’re going to have requirement for radiation or surgery that will leave you incontinent or impotent.  In fact, those are absolute misconceptions.  The vast majority of men diagnosed with prostate cancer will need either no treatment or will need treatment that gives them very little in the way of side-effects.

Joe:                             Yes, that is incredibly eye-opening, Damien.  I think it certainly takes probably a lot of people aback because of this lack of awareness and understanding of prostate cancer, it can really mean that it’s diagnosed at a later stage, which can really dramatically affect the outcome of your treatment and not only that, the quality of life.  Damien, what are the common symptoms of someone who’s been newly diagnosed and how does that differ from a patient whose disease might be more advanced?

Damien:                    That is a very key point in prostate cancer diagnosis.  The vast majority of men diagnosed with prostate cancer have no symptoms at all.  Indeed, if you can have it diagnosed on the basis of a simple PSA blood test and a subsequent MRI scan of the prostate, then nearly all people identified with tumour that is confined to the prostate at that time can expect to have a curative outcome from their surgery or their radiation if it’s required.  Most men with prostate cancer that’s at a curable stage won’t have any symptoms.  By the time people have got to having symptoms of backpain or hip pain or the like, by that time, the tumour has spread.  We do have very good treatments available for them, but we would encourage all men to come forward and be blood tested to make sure that no prostate cancer is diagnosed at that advanced stage.

In its own way, every prostate cancer death is preventable if you can identify it at an organ confined time and treat it accordingly.  When you’ve had a career in dealing with prostate cancer, you’re always influenced by remembering the number of men that came along with advanced disease that it spread to their bones or spread to their pelvic bones, spread to their spine and spread to their hips and they’ve required radiation and ongoing advanced treatment to provide pain relief.  It’s the recognition of the difficult clinical course that those men have faced that I think drives most medical practitioners to get men to have their PSA tests done regularly and their prostate cancer diagnosed early.

Joe:                             Yes, absolutely.  It sounds like symptoms also play a key part in hopefully picking up things early, even if some people may not be getting symptoms at all.  In your opinion, are there any symptoms that are commonly missed by patients?

Damien:                    By the time men are in the age range where they’re at risk of prostate cancer, they’re often at an age in their lives where they’re starting to get urinary symptoms related to benign enlargement of the prostate more often.  By the time someone is noticing that their urinary stream might be slowing, that they might be having to void more frequently, that they might be having to get up to pass urine overnight.  At that stage, they’re definitely in the age range where they should have their prostate cancer risk evaluated with a blood test.  More often than not, the symptoms that are experienced will not be directly consequential upon the presence of a prostate cancer, which can be particularly small and still produce a PSA change that’s detectable in the blood test.

Joe:                             Damien, I was intrigued to finally see the proof that we actually don’t remember the information received during stressful times.  For example, when you might be receiving diagnosis or discussing potential.  What is your advice for people around how to really best manage this?

Damien:                    In the current society that we live in, we are all very time poor.  We like to do things very quickly and efficiently.  For the vast majority of us, if you are given a cancer diagnosis, you can’t process the full ramifications of that immediately.  The best advice for patients is to stop and think.  To reflect on what they’ve been told and to go back and speak again to their clinician and ask for more information to clarify any questions they have.  Very quickly, the most appropriate management course will become apparent because there are very standard best practice algorithms that most clinicians will operate by.  It’s very hard to process it straight away.  It’s understandably a distressing time with implications for your family, implications for work, implications for other plans you might have.  I would encourage most men to think deeply about this before they embark on treatment.  The vast majority of men if they’re given appropriate treatment will find that their tumour is totally cured either by surgery or radiation and that they’ll have a normal life expectancy that they would have had even if they didn’t have the diagnosis of prostate cancer.

Joe:                             Yes, Damien, I think it’s such a vital point that you raise in terms of having to stop and think and having to process it all and come back for more questions.  I know that when I got my cancer diagnosis, I completely forgot everything that was discussed in probably the first appointment.  Just completely flew out of my mind.  Thank you for recognizing the voice of the patient and the different needs that we all have.  Damien, for a person that’s living with cancer, what advice do you have on how they really best recognize their own needs for information and for support and where should they turn for that?

Damien:                    It’s extremely intimidating to be given a cancer diagnosis.  It impacts on yourself in so many ways.  Emotionally in terms of your relationships with others, in terms of the recognition that you’re going to need ongoing interaction with different people in the healthcare sector.  The most important bit of advice you can give to someone in that circumstance is to slowly go through and recognize all of these changes that might need to be made or might need to be either just recognized with the realization that you might not need to adjust your life because those things are not going to be relevant to you.  For the sake of example, someone who will get a diagnosis of prostate cancer, the first thing they might think of is that they’re going to need extensive chemotherapy.  When, in fact, that is not the case for the vast majority of men with prostate cancer who were diagnosed hopefully at an early stage.

It’s often important to write a list, even not just itemising the changes or the different treatments that are going to be required, but how they’ll impact upon the hobbies you might have, plans for travel, plans for meeting up with friends in terms of other commitments you might have for your family.  Your relationships with extended family or children who might need to be made aware that you have this diagnosis if there’s a strong family history of it.  It’s important just to be methodical and sensible and deal with these in a fashion that takes the emotion out of it because the truth is, with appropriate treatment, most men will be cured from it, and dealing with all of these other aspects of it is just a component of that holistic care that should provide the best outcome.

Joe:                             This is such a great point that you make, Damien, I love it.  Writing things out on paper, it might seem weird or something that you wouldn’t normally do, but I think if you get things out on paper, it’s out of your head and you can look at it and be able to see what’s really going on, like you say, without emotion, right?

Damien:                    I’m a big one for having a list of things and ticking them all off and knowing that the obligations you have, have been fulfilled.  Very quickly for someone with cancer diagnosis when it’s early prostate tumour specifically, they’ll see that, yes, I can deal with this problem, I can deal with the next problem.  For the sake of example, if that person is having surgery as their primary mode of treatment, they’ll be an emphasis on them learning pelvic floor exercises, which they can gain proficiency in very quickly.  People then derive some confidence and comfort for the fact that they are dealing with each of the issues that must be faced rather than the whole cancer diagnosis and treatment following them up as it’s just too much of a big problem to be dealt with.

Joe:                             Yes, exactly.  It’s what the whole key theme I found in the paper that you wrote that not all prostate cancer is the same.  It’s really the empowerment of the patients.  Damien, what are the things that you wish that your patient would share more with you during the consultation?

Damien:                    The key thing is for patients to have an understanding of the disease that they’re dealing with.  That’s a simple thing.  They should understand whether the disease is confined to the prostate or whether it’s advanced beyond the prostate, whether the disease is low-grade, that it may not need treatment or intermediate grade or higher, where it will need treatment.  Then they should know the different options that are available to them and the likelihood that those options are going to return them back to their normal life with the most minimal number of side-effects.  It’s also then important for patients to understand the emotional impacts on this, that they might need to rely on a partner for support during their treatment process.  It might also be important for them to understand the financial impact of it.  If someone is having treatment by radiation, for sake of example, where they might need to go along and have treatment each day for several weeks, that can have a big implication on their ability to return to work.

Similarly, although, there’s less time off work associated with surgery, particularly the more minimally invasive laparoscopic robot-assisted operations, there will be time that they need away from their employment, particularly if they do heavy work or manual work, rather than office work.  The financial impact upon men who do those more labour-intensive jobs is disproportionately high in the diagnosis of prostate cancer.  It’s important that people recognize all of these issues and deal with them in a methodical fashion so that they understand the process that they’ll go through and there’s no surprises for them part of way through their course of treatment.

Joe:                             Exactly.  Also, for a person with cancer, as you know, it can be really weird or even intimidating to talk about symptoms and worries directly with the medical specialist and nurse.  Even their partner, for some of us, it really doesn’t come naturally.  What advice do you have for those of us that find ourselves in that position?

Damien:                    The first thing will be not to be overwhelmed by it.  To realize that numerous men have been down this path and the vast majority of them return to a normal life with very little implications of the diagnosis and treatment of prostate cancer, provided this is found at an early stage, which a simple blood test will facilitate.  Secondarily, it’s going to be important that they understand what their treatment physician is advising them to do.  For sake of example, if their doctor is advising them to undergo scanning to make sure there’s no metastatic disease that has spread to the bones or other organs.  The treatment doctor is probably doing this to dot the Is and cross the Ts of their treatment plan, not because they suspect that they will have advanced disease, which is usually uncommon at diagnosis of prostate cancer that’s PSA testing based.

Similarly, when their treating physician might refer them to a pelvic floor physiotherapist to optimize their pelvic floor strength prior to treatment by surgery or radiation, it’s important that the patient really understand wat’s involved and make a commitment to practice and leave their pelvic floor exercises because your return to a normal quality of life will be much faster and much more easily facilitated by taking advantage of that education.  Then thirdly to recognize that there is no downside in asking more question and seeking more assistance.  I’m a big fan of patients seeing a counsellor if they want to discuss the implications that might happen to their family from any tumour diagnosis.  Support groups, friends who might have been diagnosed with prostate cancer.  Pretty much most men in their 50s know someone who’s been diagnosed with it.  I think the majority of men who have been treated successfully for it are very happy to be of assistance to other guys in a similar circumstance.

Joe:                             Yes, that’s a powerful comment you make again about empowering people to speak up about the struggle, about their worries.  When it comes to really negative emotions that come up for you when you’re diagnosed with cancer, as a man who is really forced to confront those worries and then changes to their daily life.  To have that level of control taken away, what sort of support should you seek?

Damien:                    I think a key thing is to have the support of a trusted friend or partner who you can express your concerns to and with whom you can identify a plan for dealing with them.  Often, if you’ve got questions specifically for your treating doctor, it helps a good deal to go through them and verbalise them and write them down and have them ready to deal with as a consequence of conversation with you support person for when you see the specialist again next.  That might be questions about how this is going to potentially interfere with continence?  How it might interfere with work?  How it might interfere with fertility?  All of those things are questions that pretty much every specialist will have dealt with repeatedly.  It’s a key component to recognise the individuality of those circumstances and how they’ll affect the specific instance of yourself as a patient and writing those things down and putting them forward to your treating doctor can be a great source of relief because there’s usually a very straightforward and simple explanation for the way about and way around any of these problems.

Joe:                             Great.  Damien, you touched on some of the types of questions that you want people to be asking you, but really when it comes to seeing men who are just newly diagnosed with prostate cancer, what are some of the specific questions that you really hope that they would be asking you or their own doctor?

Damien:                    The key points in the early diagnosis of prostate cancer are, can this tumour quite reasonably be expected to be cured by surgery or radiation because it’s organ confined?  Indeed, for most men that’s the case.  Secondarily, the key thing is how they’ll undergo a return to normal activities of life after such treatment.  That might involve education with regard to exercise generally, weight loss, pelvic floor strength, medical adjustments otherwise because people might need assistance with catheter management very briefly afterwards.  That’s a novel and new thing for most men when they’re having prostate cancer treatment.  Most of those issues will usually be well addressed by a urology nurse who is usually freely available through all of the different practices and hospitals where people would usually undertake treatment for prostate cancer.

Joe:                             Absolutely.  This is incredible.  I just want to give a shoutout to all oncology nurses.  Just how helpful they are to all of us who are going through an incredibly difficult time.  Damien, I know from personal experience that it can be so hard to take that first step, to make a phone call to a helpline or to book an appointment with a specialist or to bring up a concern that you have with your doctor.  You don’t really know what to expect.  What advice do you have around dealing with the emotional aspect of cancer?

Damien:                    Your point is very well-taken.  The vast majority of men in this circumstance will do well from discussing their emotional and their general needs with as many people as they can.  It’s a very good idea to discuss these with your specialist, most of whom will be very receptive to dealing with them and will have deal with these sorts of issues on numerous occasions.  Secondly, it’s often very valuable to deal with your general practitioner who will also have had experience.  It’s never a problem to get a second opinion if questions still remain unanswered.  The value of patient support groups can’t be understated.

Particularly for men who might have a more advanced disease and who are going to have a requirement for ongoing therapy with hormone therapy or the like, where they’ll find numerous other men in a similar situation all living productive and fulfilling lives and where they’ll gain a lot of general support.  Similarly, there are multiple websites, particularly those from very well-respected organizations that are prostate cancer advocacy groups and the major universities, both in Australia and abroad that can provide very good information that will be extremely reassuring for lots of men with a diagnosis of prostate cancer.

Joe:                             Yes, these are some incredible points that you make, Damien, I will come back to the information in a second, I just want to really come back to the support groups, I know we touched on this before already.  I’m a huge fan of it, going to online supports groups have helped me tremendously because it’s really filled with people who know exactly what it’s like and it really gives you that other perspective.  It’s fantastic obviously to have the connection with your specialist, your nurse, but also having to hear from someone who’s been in that place before and they know what it’s like, it just can give you that extra layer of comfort.

Damien:                    Absolutely, men who participate in face-to-face or online support groups very clearly identify that they are not alone in their journey.  That other men have been through this on numerous occasions.  That other men are coping well with it and live a life that is very similar if not identical to how they did prior to a cancer diagnosis.  That can be tremendously empowering for me.

Joe:                             Absolutely.  Going back to the information, you touched on solid evidence-based websites, it’s so hugely important in the age that we live in right now where fake news and snake oil salesmen are really making it harder to find real evidence-based advice.  Damian, how do you go about separating misinformation from the truth?

Damien:                    That’s a really good topic to talk about.  Its significance is demonstrated by an occurrence that I noticed.  About five years ago, my colleagues Nathan Larenchuck and John Yaksley and I wrote an article that addressed this, which I think we called: Fake news and clickbait in urology.  We had it published in the British Journal of Urology more as the thought piece we were putting out there that identified this as a problem.  It was one of the five most downloaded articles for the year from that journal.  Demonstrating that this is a problem that so many clinicians recognise.  I would just encourage all patients to recognise that information that is obtained from reputable sites is much more reliable than someone who’s offering a quick solution that doesn’t seem to be supported by evidence.  If it’s put forward as an easy cure for prostate cancer and it sounds too good to be true, then the truth is, it probably is too good to be true.  Most men who have prostate cancer will be able to be treated well and cured without resort to fringe treatments that have very little in the way of long-term benefit proven for them.

Joe:                             Damien, when it comes to dealing with information and separating myth from fact, how has that changed do you think from the perspective of the Covid-19 Pandemic?

Damien:                    Covid-19 has been a huge earthquake I think in healthcare, but the consequent affect on cancer care during the Covid time I think will be the aftershock that leaves a lot of damage, as well.  It’s important for men to realize that just because someone else in the community might have Covid-19, that your prostate cancer won’t stop growing.  All men must continue to be aware of the importance of having PSA testing and following through in a methodical fashion with their treatment for prostate cancer.  Indeed, not just men with prostate cancer, this applies to people with kidney tumours, bladder tumours, women with breast cancer.  The Covid-19 of course will have a huge impact, but we’re fortunate to live in a world and in a system in Australia and indeed, in most of Asia where good treatment for cancer care is available in spite of the presence of Covid 19 in the background.

Joe:                             Yes, Damien, as a medical specialist, you are so deeply involved in cancer treatment and follow-ups and research and clinical trial, what impact have you seen from the pandemic right now?

Damien:                    When the Covid-19 Pandemic started, most of our clinical trials with regard to cancer and indeed a lot of laboratory work was put on hold.  At that time, there was even a freeze on applications for non-Covid 19 related research through different ethics committees.  Now that we’re getting back to full functioning of these areas and indeed, I think the understanding of the implication of Covid-19, which will be around with us for a long time, upon cancer care is something that’s going to be valuable for patients being treated for prostate cancer and other cancers in the future.  There’s no doubt that now we have a much better understanding of how we need to prioritise cancer treatment in the setting of Covid-19 being identifiable in the greater population.  In spite of Covid-19, most men are still going on to get quite appropriate prostate cancer treatment and indeed, treatment for all other cancers at the current time.

Joe:                             Damien, have the guidelines for treatment changed with the pandemic?

Damien:                    Not so much the whole guidelines for treatment, although, we tend to be quite specific and personalized in certain circumstances.  For sake of experience, we’re encouraging patients to have less time in hospital if at all possible.  That has involved a transition to more minimally invasive surgery, such as with robotic and laparoscopic prostatectomy rather than with open surgery.  Similarly, we’ve been encouraging people to have more in the way of short-term admission radiation therapyrather than having to turn up every day for six wees for extended external beam radiation therapy.

Joe:                             Absolutely.  Damien, lastly, are the cancer survivors or maybe those living with cancer, are they more likely to be impacted by Covid-19, is there anything we need to pay particular attention to?

Damien:                    Fortunately, the vast majority of men who’ve had their prostate cancer identified at an early time will be cured as a consequence of their surgery or radiation, if required, or they won’t need additional treatment other than just monitoring with PSA tests.  These people probably are not going to be impacted substantially by Covid-19 more than any other member of the community.  The group that we’re particularly concerned about is those men who’ve got advanced disease.  Those men who might have disease that’s spread and have required hormonal therapy or might have required chemotherapy.  For that group, we’re trying very hard to shield them from anyone who might have been in contact with someone with Covid-19.  That group does have an increased risk and to that end, we re-double our efforts to try and identify prostate cancer at an early, organ confined and curable stage.

Joe:                             Which is more so important now than ever before.  Thank you so much, Damien, I really appreciate you time.

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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In this episode of Simplify Cancer Podcast, we talk about better ways of dealing with isolation, staying in good shape during isolation, and keeping your energy levels up.

This is particularly crucial in the time of the COVID-19 pandemic. Our special guest is Dale Ischia, an exercise physiologist who specialises in exercise and cancer, and here is what we cover in our discussion today:

Full episode transcript (PDF)

Starter Exercises Program from Dale

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

I will never give out your email - view my Privacy Policy