The Oncology Podcast

Nothing to fear? Facing the challenge of fear of cancer recurrence

• Professor Bogda Koczwara AM • Season 2 • Episode 1

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Confronting the Fear of Cancer Recurrence

Welcome to the latest Series of Supportive Care Matters, a podcast hosted by Medical Oncologist and International Cancer Survivorship Expert, Professor Bogda Koczwara AM.

The fear of cancer returning is a silent struggle for many survivors, often overshadowing their recovery. In Episode 1 of this new Series, Bogda explores this deep-seated anxiety with experts Professor Sophie Lebel and Associate Professor Ben Smith.

They unpack the realities of recurrence fears — why they persist, who is most affected and how they impact daily life. Research shows nearly every cancer survivor experiences some level of worry, but for 40%, it becomes a significant source of distress. Caregivers, too, often share in this burden.

Sophie and Ben highlight the need for better interventions, especially for underrepresented groups, and share practical strategies for managing fear in clinical settings. From open conversations to structured support pathways, they highlight ways to help survivors move forward with confidence.

Join us for an insightful discussion on breaking the cycle of fear and fostering a more supportive, hopeful survivorship journey.

Visit www.oncologynews.com.au for show notes and more information about Supportive Care Matters.

This conversation is proudly produced by the Podcast Team at The Oncology Podcast, part of the Oncology Media Group Australia.

Speaker 1:

Okay, folks, long time no hear.

Speaker 1:

Some of you might have heard that I've ended up on the receiving end of the healthcare system last year with a badly broken arm and ended up out of action for quite a long time.

Speaker 1:

Many interesting lessons in that and a worthy topic for a future podcast, as I was grappling with the fear of never being able to use my limbs as I used to. So, in my effort of returning to regular podcasting, it is quite fitting that we should start by talking about fear and how it is such a common feature of the cancer experience and, as it is often in life, the greatest fear in life is not what is, but rather what could be, not the known but the unknown. For cancer survivors, that burdensome unknown is the fear of cancer recurrence or progression, which is often incredibly pervasive and deeply disturbing. So how can you overcome something that is so intangible and yet so real? To find answers to these questions, let me introduce you to two of the world's experts in the area of fear of cancer recurrence, whose work is really changing the field of cancer supportive care across the globe.

Speaker 1:

I'm Bogda Kozlara and this is Supportive Care Matters. My guests today are two researchers from two different corners of the globe who are leading experts in the area of fear of cancer recurrence. Together, they're making huge steps in addressing this burdensome problem. Let me introduce you to Professor Sophie Lebel from Ottawa, canada, and Associate Professor Ben Smith from Sydney, australia. Dr Lebel is a clinical psychologist and a professor at the School of Psychology at the University of Ottawa. Her research focuses on cancer survivorship and psychosocial interventions and she won the Bernie Fox Memorial Award from the International Psycho-Oncology Society in recognition of her work. Associate Professor Ben Smith is a Cancer Institute New South Wales Career Development Fellow and Senior Implementation Scientist at the Daffodil Centre, cancer Council, new South Wales and University of Sydney Collaborative. Ben leads the Daffodil Centre III Innovation Implementation Impact Stream, which produces evidence supporting implementation of innovations to positively impact cancer control and care. Sophie and Ben, welcome to the podcast.

Speaker 3:

Thank you, happy to be here. Thanks for having me.

Speaker 1:

All right. So why don't we start with some basics? What is fear of cancer?

Speaker 3:

occurrence. Okay, maybe I can talk a little bit about that. So, fear of cancer occurrence we came together as a group and defined it as the fear, worry or concern that cancer may come back or progress. So there's a couple of things that I really like about this definition. First of all is the possibility that you know you could experience a range of emotions, ranging from a concern and everybody has a concern about fear of cancer occurrence, to something more severe like worries about your cancer coming back. And we had discussed, you know, not just recurrence as in no evidence of disease that you get a recurrence but also a definition that allows for people who have stable cancers but are concerned about their cancer worsening, progressing. So this definition at the time was meant to include all these different presentations.

Speaker 1:

And why does it matter? What is the impact of having fear of cancer recurrence or fear of cancer progression?

Speaker 2:

Well, bogda, as Sophie said, we know that almost every person affected by cancer experiences some degree of worry or concern about their cancer coming back, but for about 40% of people, those fears or worries have a big impact on their life and are associated with distress and poorer quality of life. And for about one in five people who experience severe fears or worries, it can really stop them from planning for the future and engaging with important or valued activities such as their work or their family. And it's, I guess, important to note as well it's not something that just affects patients. It affects caregivers, sometimes even more so than patients and survivors themselves, and we know that it has an impact on the healthcare system as well, because people with higher levels of fear of recurrence do tend to seek medical reassurance more commonly to help reduce those fears. So it burdens patients or survivors, caregivers and the system, and is associated with poorer mental health and quality of life.

Speaker 1:

So clearly an important problem that is relevant to many, if not all, people with cancer. But, as you've pointed out, while everybody might have concerns about recurrence, not everybody experiences the level of disability that you have just outlined. So are there any particular individuals that are more at risk of disabling severe fear of cancer occurrence?

Speaker 3:

You touch upon an important point here.

Speaker 3:

When we talk about disability and fear of cancer occurrence, to me it's important that we distinguish people that have normal fear of cancer occurrence or people that have occasional fear of cancer occurrencerence, or people that have occasional fear of cancer recurrence, let's say, when they're going back to their annual oncology appointments, to those that are part of our interventions, and these are people that have very frequent worries and sometimes tell us it's almost like a daily concern.

Speaker 3:

People that are more likely to experience these high levels of fear of cancer recurrence have been identified as being women, younger cancer patients, those who experience physical symptoms, physical side effects, long-term effects of the cancerous treatments, because they're more likely to experience things in their bodies that make them think that the cancer has returned or progressed antibodies that make them think that the cancer has returned or progressed, as well as people that have a previous history of anxiety symptoms.

Speaker 3:

And one thing that I often get asked by oncologists or other healthcare professionals when I do presentations on fear of cancer recurrence. People often ask me but wouldn't it be somebody with a higher stage or somebody that's more likely to experience a recurrence? So, let's say, people that have a 30% chance of recurrence or a 50% chance of recurrence. Well, clearly they think that these people will be more likely to experience fear of cancer recurrence than those that have maybe a 5% or 10%, and there is no good evidence in our science that shows that people with higher objective risk of recurrence are more likely to worry. It's really what people perceive their own risk, or subjective risk, to be that seems to drive fear of cancer recurrence.

Speaker 2:

I think that's really important for how we address fear of recurrence in practice because, yeah, some of those clinical variables that you'd expect to be associated with it, just those relationships aren't borne out. So it makes it quite difficult for clinicians to identify who might be most likely to experience these fears. And the other thing to note is that people often expect that they'll reduce over time, but we know that people can experience these fears or worries many years down the track. An example would be men with testicular cancer. I mean, they have a very good prognosis and low risk of recurrence after five years, but we still see men 10 years post-treatment who are quite worried about the risk that their cancer will come back.

Speaker 1:

So really, what you're saying is that you cannot make an assumption that there is a particular cohort of patients who would be more likely to experience fear of cancer recurrence, or a particular cohort that wouldn't, and therefore you should not intervene or assess them for this being present, because there isn't a perfect predictor of who's likely to be at risk.

Speaker 3:

Correct, and I think we both say that it's important that people get asked repeatedly about their levels of fear of cancer recurrence both caregivers and patient survivors because, as we said, fear may persist for years and some people experience a fear that's quite specific to like just coming back to an oncology center or waiting for test results. So it's important that we test people frequently, that we measure their fear of cancer. It's not just at these moments where it's normal for most people to get anxious while they're waiting for their test results, but some people will worry outside of those their test results, but some people will worry outside of those. So we believe that it's important that we ask these questions as part of routine care as often as possible.

Speaker 1:

So you're already touching on what it is that could be done and really asking questions about a fear of cancer recurrence is potentially one of the interventions. But what is the state of evidence on sort of interventions? What do we know in terms of what is potentially efficacious?

Speaker 3:

So there's a good state of validity at this point. So we've come a long way in the past 15 years with many interventions that have been tested through a randomized control trial. We now have two meta-analyses, several systematic reviews, probably a dozen systematic reviews that have been published all the past five years, and all point towards these interventions being efficacious at reducing fear of cancer occurrence, and a range and breadth of different interventions are available. Most of them are brief, so brief. Usually cognitive behavioral interventions will be effective in about sort of a six to seven session range, and we found good evidence for group interventions, individual interventions, what we call blended interventions, so a mix of in-person and online. So there's a mix of in-person and online. So there's a lot of good options out there that show that, at least when you can, you know these studies have been conducted, you know, in rigorous university centers, medical centers.

Speaker 2:

They do work at decreasing fear of cancer occurrence. Yeah, I think it's important to note, though, that most of the interventions have focused on the group of patients that are experiencing severe fear of occurrence. There's perhaps not quite as much evidence for interventions that are more focused on addressing the large group of patients or survivors, so 40% or so that experience more moderate levels. As Sophie said, that might kind of spike around coming in for follow-up appointments or having scans and things like that, but I think there's a real need to develop the evidence in that space as well, because that's such a large group of patients and we don't really have that. I think we need to look more closely at online interventions, but noting that they may not be suitable for everybody.

Speaker 2:

There's a lot of work that's happened. Sophie's leading some of it around group-based interventions. I guess that can address these concerns in multiple people at the same time. So there's definitely a few gaps in the evidence, and I guess most of these interventions have also been tested in white, well-educated women with breast cancer, and we really need to extend that evidence to people from First Nations backgrounds, for instance, and culturally and linguistically diverse patients. You know there's a big lack of evidence on how we best support those groups.

Speaker 1:

Can I pick up on the kind of the issue of the difference, if any, between fear of cancer recurrence versus fear of cancer progression and the level of and the evidence available in terms of interventions for those? Because I would imagine it's a different scenario where you have somebody who theoretically should be reasonably well with no evidence of cancer versus somebody who is living with the symptoms of cancer or cancer treatment and regular visits to the cancer center. Is there a difference in how much evidence for interventions is available between those two constructs and also is there evidence in how efficacious the interventions are for both? Or is it reasonable to say that fear of cancer recurrence and fear of cancer progression are really the same?

Speaker 3:

Wow, that's a really good question, or questions, I think really the jury is still out on that. So fear of progression is sort of a parallel term that emerged from research in Germany about 20, 25 years old. So there's a lot of research there that looks at fear progression, not just in people with cancer but people living with other chronic diseases like diabetes, for example, or arthritis and so on and so forth. So fear progression was originally as a broader construct, a broader concept, about being afraid that whatever chronic illness you have may progress, worsen and prevent you from enjoying things that we've mentioned earlier, like your work, your relationships, your hobbies, anything that's valuable in your life. So fear of cancer occurrence and fear of progression have sort of developed in parallel, with at first people just using the term interchangeably and sort of depending on where you were based as a researcher, you tended to use fear of cancer occurrence, maybe in North America and, in's say, with you know, newer systemic treatments that are now living with advanced cancer but controlled, who may be afraid of fear of progression.

Speaker 3:

Is that the same as fear of cancer occurrence? And there's very few studies that have looked at that and there seem to be some small differences in terms of how closely related these things might be to things like death anxiety. But I would say really, right now, we're not 100% sure, and what that means is we're not 100% sure either if we can take these wonderful interventions that we've talked about and just offer them, as is to people who may be faced with a lot more medical uncertainty and uncertainty into their day-to-day lives and are afraid of fear of progression. So I think there's debates right now about how we should go about adapting or creating something different or using different interventions specifically for people who are thankfully living longer with advanced diseases. So, yeah, we're really not 100% sure. I don't know.

Speaker 2:

If you want to add something to that, then yeah, I think, yeah, sophie's given a great answer there and we do need to do more work. Looking to see whether the same kinds of interventions for fear of recurrence may also help people with fear of recurrence is a rational concern, to some degree, that the interventions that are most effective tend to be those that change the way people engage with thoughts or worries about their recurrence. The goal is not to try and eliminate them, because for many people, whether they have fear of recurrence or fear of progression, there is a risk, which might be variable, that their cancer will come back or progress. So there's probably additional elements that need to be included for people facing fear of progression and that greater degree of uncertainty that Sophie mentioned. But I feel that those interventions that are changing the way that people engage with their worries and trying to help them not get as caught up with them may be useful for both groups, but we certainly need more evidence to determine that.

Speaker 1:

So let's have a look at what it is that we can do with the evidence today, and, as a practicing oncologist, I'm keen to know what I can do right here, right now, with the evidence that's available to me and my colleagues. How can we best support patients aside from just saying I think we just need to refer them somewhere so we don't have to do it? So help us out. What do we do at the coalface do at the coalface Sure.

Speaker 3:

I think any frontline healthcare personnel has a really great opportunity here to address questions, address concerns, provide psychoeducation, just open up the conversation.

Speaker 3:

So there's wonderful studies out of the UK that show that people who are given the opportunity to express their emotions around fear of cancer occurrence to their radiation oncologist and radiation technologist are less likely to experience fear of cancer occurrence. So just simply asking patients and normalizing and say, hey, many people are afraid of cancer coming back. Is this something that you've experienced? Because there are things we can do to help you at Cancer Center X can go a long way in terms of having that conversation. So if patients feel like, hey, this is something you're aware of and you're curious about it and you may have solutions or you know help.

Speaker 3:

So I think there's a lot you can do in terms of simply normalizing, introducing the topic, asking a few questions, see how people are coping and if this seems to be something that they're managing okay I found in my clinical experience and simply asking people do you feel like you're coping okay with this fear or do you feel like it's taking a bit too much space? People who felt like their fear of cancer occurrence was taking too much space were usually kind of spot on in terms of how this corresponded to measures. So if people feel like you know what I feel, like this is taking a lot of space, could be the beginning of a good conversation to have with them.

Speaker 2:

Yeah, I totally agree with Sophie. I think opening up the conversation is such an important thing for all health professionals and caring for people affected by cancer to do. It's something that a lot of patients or survivors are very reluctant to bring up. There's evidence showing that they will very rarely initiate conversations around their fears because perhaps due to worry that they'll seem ungrateful for the treatment they've received or to be questioning whether or not it's worked. So I think it's really important for health professionals to initiate those conversations and there's been some great work done by Jenny Liu, who's a medical oncologist in Sydney, looking at brief oncologist-delivered interventions and key components of those you know, asking the question, normalising and validating concerns provide.

Speaker 2:

Often there's some uncertainty about what symptoms people should be paying attention to or worrying about and which might be less troublesome. So some education around that and actually a lot of people are, you know, may not actually know their risk of recurrence. So, where possible, I think, giving people that information if that's something they want to know about, then it is also important and I think in Jenny's study that discussion took about eight minutes, which I know is still a long time in the context of what are sometimes 15-minute follow-up consultations, but that short conversation alone can have a significant effect in reducing fear of occurrence and is acceptable to patients and seem to be feasible for clinicians to deliver as well. And I think this is yet to be determined. But it would be amazing if a lot of those conversations, I guess, prevented people from developing the more severe worries that we require these more specialized interventions for. But I think that's still a bit of an open question as to what the longer term impact of those conversations is other people.

Speaker 3:

Encouraging them maybe to join a support group if that's something they would like to do. Encouraging them to attend an education session about signs and symptoms of recurrence, if that's available at their cancer center. Encouraging them to exercise, you know, to follow the guidelines around surveillance. Encouraging them to, you know, lean into their religious, or, you know, spiritual beliefs is that something that works for them to journal, to practice gratitude to, you know, do things that reduce their levels of stress and engage in self-care. So all these things, I think, can really help a lot of people manage their fear of cancer occurrence and it's a powerful message if they can hear it, you know, early on in the disease trajectory and from as many people as possible.

Speaker 1:

And the type of interventions that you are outlining seem to be pretty simple, not that expensive and pretty safe.

Speaker 2:

Yeah, I think that's why there's so much potential for these interventions to have a big impact. I guess the challenge is really integrating these interventions into practice. You know, which is something that both Sophie and I, in the field more broadly, is grappling with? We now have a lot of interventions that we know can be helpful. Yeah, a lot of interventions that we know can be helpful, but how do we actually develop the infrastructure and pathways to connect people with those interventions and deliver those during busy clinics, where you're trying to fear of occurrence is not the only issue that you're trying to address.

Speaker 1:

So this is a very nice segue to the bits of work that both of you have undertaken, approaching this issue from a slightly different angle. Sophie, you and your team led the work of developing guidelines for management of fear of cancer occurrence. And Ben, you have developed the clinical pathway of how to manage fear of cancer recurrence. And Ben, you have developed the clinical pathway of how to manage fear of cancer recurrence. Can each of you, perhaps starting with Sophie, take us through what you did, why, how you went about it and why you think that that work can potentially improve care?

Speaker 3:

So I was approached by a government organization called Cancer Care Ontario, or now called Ontario Health, which is the province where I live in Canada, and this government agency oversees the care of cancer patients across this part of Canada we are the largest and most populated province of Canada and they approached me just before the pandemic to do these guidelines. They produced several you know, patient management, patient symptom management guidelines, and this is one they felt was timely, given that there were now systematic reviews being published and you know. So they thought, ok, well, we've got enough evidence. So this is one of the first things that needs to be in place before an organization decides to put in a guideline. What is the level of evidence, as you asked? So, because there was enough evidence, they said well, let's summarize that of reviews and guidelines.

Speaker 3:

So I was paired up with a lovely scientist and somebody who was very experienced as writing up guidelines and I was in charge of leading our little scientific team. So we had about eight of us, including two patient partners, who provided feedback on the guideline. So we reviewed systematic reviews, meta-analyses, and we came up with research questions at the start, and our research questions were what would we recommend in terms of screening for fear of cancer occurrence in terms of assessing for fear of cancer occurrence, and what would be our recommendations when it comes to managing or addressing fear of cancer occurrence for different levels, as we've talked about, I think, from the beginning there's people that experience sort of modest, occasional fear of cancer occurrence. There's some that experience it a few times a year, and then there's these higher levels of fear of cancer occurrence that become quite taxing. So we came up with recommendations at all these levels. So it was done over meetings, over review of documents and then drafting, and then, once we had a draft, it goes out to various external committees, so it goes out to a content expert. So, for example, ben provided feedback on this first version of the guideline and then it went out to clinicians. So a very large number of clinicians, oncology clinicians provided their comments about the usability, readability of the guideline and we tried to summarize and make sure that the key points are coming across, because sometimes these guidelines can be perceived by cancer organizations as oh no, something else I have yet to implement and they're quite large. This is at least 70 pages. So we're trying to boil it down and to do a lot of knowledge dissemination efforts after. So I've made several presentations to different government structures to try to see how we can implement the guideline. And this is where it circles back to your point.

Speaker 3:

A lot of these recommendations are sort of practical common sense and are using tools and services that are already available. But it's how do we put them in a coherent pathway, which is why I really admire Ben's work, and how do we make sure that the right person gets the right level of intervention at the right moment. And this is where I think our work is complementary, because we are making these recommendations. But in all honesty, I think what's happening is there's a lot of enthusiasm for the sort of exciting psychological interventions, the six weeks, seven weeks. We have one of our own called FORT, so cancer centers are really interested, Clinicians are interested in having this intervention available. But there's the whole background about how do we screen people, how do we assess, how do we make sure that we refer them, how do you refer them, which is yet to be sort of tested, implemented and really rolled out in Canada.

Speaker 1:

So then, what about the pathway? How does the pathway fit into it, and how did you go about developing one?

Speaker 2:

Yes, a pathway is similar to guidelines in a way, but in that it's trying to provide a standardized way of addressing a particular issue, most commonly with a multidisciplinary approach. But a clinical pathway tends to be a bit more context specific when I think about it. You know, guidelines for me could be kind of a map with some pins stuck in it indicating places that you want to go or things you want to see, and the pathway is, I guess, a bit more like a detailed set of directions from Google Maps or a local who can provide some recommendations on the best route to follow to get to those places and things you might want to do along the way. So an example would be screening for fear of recurrence. In the guidelines that Sophie and her team have produced, one of the key recommendation is to use a brief, single item tool that both Sophie and I have worked on validating to screen for fear of recurrence. The clinical pathway also includes recommendations about the timing of that screening, who should do the screening, what should happen after the screenings occurred and how regularly it should be repeated. So there's just a little bit more granular detail, and those recommendations have been developed through what's called a Delphi process.

Speaker 2:

So we went to health professionals primarily being the people that would ultimately be the ones implementing this pathway to ask them to agree or disagree with a series of statements that are largely consistent with Sophie's guidelines, although this happened kind of in parallel with the development of them. One thing we did a little bit differently for this pathway is we asked people what they thought was optimal, or to rate how optimal the recommendations were or statements, as well as how feasible how optimal the recommendations were or statements as well as how feasible they were, because I guess we really wanted to know what is going to result in the best outcomes for patients in the views of clinicians and experts in this field, but also what are we actually going to be able to implement in practice and what strategies do we need to overcome those barriers. Yeah, the pathway is really just a slightly more granular and context-specific guide to addressing this concern in practice.

Speaker 1:

So does that mean that, given that the pathway is a little bit more context-specific, meaning some things would be optimal and desirable but they may not be feasible? In this context, does that mean that if an organization takes on a pathway, they may need to do a little bit of a let's call it context realignment assessment? Do we actually have the stuff, do we have the tools, do we have the knowledge to put this pathway into our organization? Is that the process that is required in implementation, or is there a different way of kind of checking whether your guidelines will actually translate into clinical practice?

Speaker 2:

Yeah, I think that's. A really important part of implementation is, I guess now we have what you could say represents an ideal pathway consistent with the guidelines to address geriatric cancer and clinical practice. But obviously every different site or system is going to operate differently in terms of the way that they're already addressing this issue, the resources that they have available and their capacity to, I guess, introduce new innovations. So I think mapping the pathway against the existing workflows and processes at a site or system level is a really key area to minimize that concern that you know. This is just another thing that people being asked to do, and one example of that would be, for instance, in Australia, patient reported outcome measures are more commonly being used in practice as part of routine care, and so our suggestion is to and in Canada you know, the Edmonton System Assessment System is also quite commonly used.

Speaker 2:

So our suggestion is to integrate that one, that single item fear of recurrence screening measure, into these existing tools that are already being used. So it's not creating extra work, it's just that it's complementing the existing systems and processes.

Speaker 3:

I feel like this work.

Speaker 3:

It seems like it's a lot of work but it's necessary. So I'm in the process of implementing a fear of cancer recurrence intervention across five Canadian cancer centers and with each one of them we had to almost develop a quasi-pathway not at all as elaborate and as complex and thorough as the one Ben has proposed, but with all of them we needed to basically figure out how do we get person A screen assessed and into a fear of cancer occurrence intervention. So all cancer centers will have their own strengths and sort of barriers. So we needed to help, you know, work together to figure out what those are and engage in multiple conversations to try to come up with something that is a pathway that's sustainable for each cancer center. And while there are many similarities between them, each of them work in a slightly different way, so there's tweaks, basically. So I think having a pathway like the one Ben developed is great, because then you start with some sort of idea about how you can go about it and then we can adapt and modify with each cancer center.

Speaker 1:

And I think that really illustrates that the certain building blocks of it are very similar. Every aspect of it includes initial assessment, screening, assessment of severity, referral, et cetera, et cetera, and that is evidence-based but also context specific yeah, that's right.

Speaker 2:

I think the two things are very complementary. The pathway, yes, so if you mentioned, may help implementation, and that's what it was designed to do by, I guess, providing a more detailed map of what, um, how this could be implemented, that that different organizations can then adapt. I think the one difference between the pathway and the guidelines that I've been thinking about a lot recently and I'm very curious to see how this plays out in practice is that they both recommend kind of a stratified approach to addressing fear of recurrence. But I think in Sophie's guidelines it's more of what you would think of as a matched care approach, so you do an assessment to determine the level of fear of recurrence that someone has and then you provide kind of immediate intervention that is matched to that level of fear, whereas in the pathway we suggest a step care approach where everybody receives some basic level of intervention initially and then, if they continue to experience higher levels of fear or worry, then they would get a more intensive intervention.

Speaker 2:

I guess I've been looking at some of the qualitative data that we collected during the development of the pathway and even though I think there could be advantages to taking that step care approach, as we discussed earlier. Perhaps you would actually prevent some people from developing more serious concerns with that more basic kind of brief, clinician-based intervention. With that more basic kind of brief, clinician-based intervention, if you're waiting, if you have to rescreen or assess someone further down the track to see how their levels of fear have changed. A lot of participants in the Delphi study pointed out that that's actually something that we don't do particularly well in clinical practice at present and that that just seems like another way that people could slip through the cracks to some degree and miss out on intervention that they need. So, yeah, I'd love to see something comparing those two approaches, and that is something that could be done in the context of implementation research, like having different sites using slightly different models and seeing what the outcomes were.

Speaker 1:

It sounds to me like you will have both of you will have plenty of research work yet to follow, building on this work. But I'd like to just change direction for a second and look back on your specific, your each individual career path in this field. It is not exactly a very large field. It's a highly specialized field and in fact, both of you have really advanced work in this area, significantly working in your specific areas. How can you reflect and share your perspective of how you managed to end up in such a new and exciting field and how did you manage to create this work to be complementary as opposed to competitive, because it's not something that necessarily is frequently seen in academia or not necessarily frequently rewarded in academia. And I think that the story of advancement of fear of cancer recurrence is exciting, not just because of the theory and practice of managing fear of cancer recurrence, but also your own individual story of being a researcher in this space. So tell us about your research journey.

Speaker 3:

Okay, well, those are really great questions. So I think there were some key moments. A key moment for me was when I started my PhD thesis. I started in 1998.

Speaker 3:

So back then we really didn't know a lot about cancer survivors and cancer survivorship was a new thing. So we assumed, until you know sort of the early 2000s, that once people had finished treatment that was the end of the story. The goal was to get them through treatment and after that people were returning to their normal lives. And I was fortunate to have access to a cohort of patients that had gone through a brief sort of coping intervention. And now we were going to re-interview these women with breast cancer six years after they had been diagnosed to see how they were doing. And this was one of the first sort of study using longitudinal data where we could see, well, how are these women doing? And one of the things I looked at I asked them about stressors, common stressors, and one of them was uncertainty and fear of the future, which is a bit like sort of an earlier version of fear of cancer occurrence. And what struck me in my data is that this was their number one concern from shortly after diagnosis to the time they were followed for that first year and now, six years later, it hadn't really decreased either. So they were still concerned pretty much as much as they were during that first year. So that was a surprise to me because we had assumed that. Well, you know, they were told now this is past the five-year mark and most people would be over that fear. So that was a key moment for me where I'm like, oh, there's something there.

Speaker 3:

And then shortly after that I started my fellowship at the Princess Margaret Cancer Center, which is the largest oncology center in Canada, and I got to treat people with fear of cancer recurrence as a clinician in training and I realized, you know, when I started seeing these patients, that at the time there were no published interventions. So you know, I went to Litcher and there was nothing there. So I cobbled together what became eventually our fourth intervention, but sort of taking pieces of what I could find to try to address what is a realistic concern. So I always tell my patients we're not treating a phobia here, we're treating a realistic concern. And how can we help you? As Ben said, you know, the fear won't go away, but we can help you learn to manage it. So that was kind of you know another important moment where I saw there was a clinical need here, and then some of it is serendipity.

Speaker 3:

So I was fortunate to meet at a conference a lovely researcher by the name of Dr Belinda Thues, who's an Australian colleague, who was also doing work in fear of cancer occurrence, and she's like oh, you probably have some data, I've got some data. Why don't we pull our efforts together? I'm like great. And she then introduced me to the wonderful Phyllis Butow and that was a game changer for my career because fast forward now to 2015, I was fortunate to get a little bit of grant money from the government and from university to get together in a colloquium a lot of fear of cancer occurrence experts and some patient partners and some implementation experts, trainees and that's when we came up with the definition, we came up with a research agenda and Phyllis Butow was amazing at bringing people together in a collaborative environment.

Speaker 3:

Ben was then working as a PhD student with Phyllis. Butal was amazing at bringing people together in a collaborative environment. Ben was then working as a PhD student with Phyllis and he came along to Ottawa and Phyllis said we need to organize ourselves, we need to become a cohesive group and she suggested we create a special interest group, a SIG, on fear of cancerrence with our international society called IPOS, and we created this group. We sort of played with words and we came up with FORWARD fear of recurrence, forward and this group has been an amazing success in the past decade and it's really been a driver for a lot of collaborative data exchange, sharing of ideas. We've done work with low and middle income countries through this organization. So I would say that I owe personally a lot to Phyllis. That was an amazing idea. It repaid itself so many times and I think she set us up towards this idea of like let's all collaborate together and it's really been our model and our success.

Speaker 1:

So, ben, you were there from a relatively early stage as well.

Speaker 2:

Yeah, absolutely. I mean that initial colloquium in Ottawa that Sophie organized that brought together people from around the world who had an interest in fear of recurrence, and it was experts. But there were also people like me who were very new to the field and several of Sophie's students and other people who were quite junior at that time, and I think it was just so inspiring to see people working towards a collective vision. And at that meeting the definition of fear of recurrence was developed and research priorities as well, and I hate to call them working groups because it sounds so boring, but essentially teams of people were created who were dedicated to progressing work in each of those areas that were identified as important.

Speaker 2:

And I think that international collaboration has been really key because, I mean, we are operating in an environment of kind of scarce resources, I guess, in terms of research funding and even system capacity. So, you know, I think it's much easier to grow the pie when you're not directly competing, but, as Sophie says, you can share data, you can test ideas with colleagues, you can conduct studies across different countries. We've really gotten so much out of that. I also owe a lot to Phyllis and POCOG, the Psycho-Oncology Cooperative Research Group, which is where I started out jointly coordinating the Conquer Fear RCT with my now wife, jo. So more to it's not just that my career focused on fear recurrence. That I have to be grateful for, and POCOG have a similar SIG in Australia. I guess, though, that, yeah, there's still maybe a little bit more competition than would be ideal, and we've really managed to avoid that as an international collaborative group.

Speaker 1:

I think it's a very important point, ben, that you emphasize that very often in the times of great scarcity the competition tends to sort of get the upper hand, where, in fact, if you look back at a long trajectory going back to, you know, 20 years or so for Sophie what started as an important clinical observation really grew through collaboration and collegiality and seeing the long-term vision and the long-term big picture. And I think that that's actually quite reassuring and perhaps maybe even more now, because we live in the world of great sort of scarcity in general, not just in research and not just in medicine that it's worth remembering that collaboration ultimately wins in the long run.

Speaker 2:

And mentorship too, as Sophie mentioned. I mean Phyllis was a mentor for Sophie. I mean Sophie's been a great mentor for me, sophie, I mean Sophie's been a great mentor for me. I think it's where possible. Senior people in the field need to be making opportunities for the next generation, where I think things can become. I guess it's tempting when you're competing for scarce resources for you know to put the high-flying profs, the CIA, on every grant, but that doesn't reallydocs and the like I really like that word generous.

Speaker 3:

I think I was encouraged by my own mentor to be a generous mentor and to provide opportunities for authorship, you know, for training abroad, for anything that helps advance a junior person's career and that you take it forward somehow.

Speaker 3:

So this will come back and in terms of our work together, ben and I, you know, when I went to visit Phyllis and her group in Australia here's a little anecdote that maybe you'll like I was looking for a place to stay in Sydney.

Speaker 3:

I was going to be there for about eight days and Ben generously offered to have me over at his place, him and his wife, and I said, yes, sure, I'll do that. And it was the beginning of a collaboration that's lasted now over a decade and the beginning of, you know, one of my dearest research collaborations. Whenever I go to a conference I say that Ben is my fear of currents or occurrence bestie and I really enjoy, you know, the ideas that we share and you know Ben encourages me to think and to like refine and, you know, be thorough with our ideas and our projects. So it's really been incredibly beneficial and I think this has served sort of to encourage others to share their data sets, to share their ideas and to think about how we can grow the field together. So it's really been one of the highlights of my career this group and these collaborations.

Speaker 1:

It's a wonderful anecdote to end this podcast on. Ultimately, everything that we do is so incredibly personal, and that's what makes it important. So thank you, Sophie, and thank you, Ben, for joining me. It's been a wonderful discussion, not just about the science and implementation of fear of cancer recurrence, but also the joys and opportunities in collaboration, mentorship, friendship. Thank you very much.

Speaker 2:

Thank you, obde, it's a pleasure.

Speaker 3:

Thank you, it was a pleasure.

Speaker 1:

Yes, Thanks everyone Over and out. That is all for Supportive Care Matters, a podcast created by me, bogda Kozluara, for researchers, clinicians, policymakers and patients passionate about improving the lives of people affected by cancer, thanks to Mark Tai, who composed the original music, and the Oncology Network, our producers. For show notes, go to wwwoncologynewscomau. Subscribe to this podcast at your favorite podcast provider and rate us. It will help others find us.