The Oncology Podcast

No longer invisible. Addressing the unique challenges of metastatic cancer survivorship

• The Oncology Network • Season 2 • Episode 2

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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 landscape of cancer survivorship is evolving before our eyes. As treatment advances allow people with metastatic cancer to live longer, we're witnessing the emergence of a population that exists in what medical oncologist Dr Lori Spoozak calls "the place in between" – not curable but not actively dying.

In this eye-opening conversation, researchers Associate Professor Nick Hart and Dr. Andrea Smith (who herself lives with metastatic breast cancer) explore the unique challenges faced by those living with advanced cancer. While survivorship programs have traditionally focused on post-treatment care, metastatic patients are typically on treatment for life, navigating constant healthcare interactions, accumulating side effects and facing the certainty rather than just the fear of disease progression.

The discussion reveals how metastatic cancer patients have often fallen through the cracks – excluded from survivorship programs yet not appropriately served by palliative care services that focus primarily on end-of-life needs. This growing population faces what Dr. Smith describes as supportive care needs "on steroids" – intensified physical, psychological, financial and practical challenges that require specialised approaches.

Hart and Smith share their ground-breaking work developing the first international standards for metastatic cancer survivorship care, now translated into 14 languages to guide implementation worldwide. They emphasise that improving care requires action on multiple fronts: better education for healthcare professionals, redesigned care models, dedicated peer support programs and recognition that survivorship care is everyone's responsibility rather than the domain of any single provider.

Whether you're a healthcare professional, researcher, patient advocate or someone living with cancer, this conversation challenges conventional thinking about survivorship and offers a compelling vision for more inclusive, responsive care. Discover why supporting those living for years with incurable cancer represents both an urgent challenge and a tremendous opportunity to enhance quality of life for this overlooked population.

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:

Until recently, surviving cancer implied that the cancer was well and truly gone and the treatment no longer required. But as anti-cancer treatments improve and people survive longer, those living with cancer face many survivorship issues. Are they not cancer survivors, and are their needs similar or different to those whose cancer is gone?

Speaker 1:

I'm Bogda Kozlara and this is Supportive Care Matters. My guests today are two researchers who have contributed significantly to shifting the dial on the discourse relating to metastatic cancer survivorship Associate Professor Nick Hart and Dr Andrea Smith from Sydney, australia. Nick is the National Health and Medical Research Council Research Fellow in Cancer Survivorship and a Program Director of Clinical Exercise Physiology at the University of Technology in Sydney. He is the inaugural Multinational Association for Supportive Care in Cancer Survivorship Fellow who led the development of international survivorship care standards, of MASC and ASCO, practice recommendations and research priorities for people affected by advanced or metastatic cancer. Andrea is a Senior Research Fellow at the Daffodil Center University of Sydney and the chair and the founding member of Metastatic Breast Cancer Action Australia. Andrea contributed her expertise into the development of the guidelines as a cancer researcher and as a survivor living with metastatic cancer. Andrea, nick, welcome to the show, thanks.

Speaker 3:

Bogda, lovely to be with you.

Speaker 2:

Thank you, thanks for having us.

Speaker 1:

All right, so let's start at the beginning. What is different about survivorship of people living with metastatic cancer?

Speaker 3:

I think essentially it's that there are a less understood population. It's an emerging population. But it's also a success story in that treatment advances mean that people are living much longer now with advanced metastatic cancer. But I think we're sort of lagging in our understanding of what this means for this population. So I mean Nick's done some amazing work or his systematic review on unmet supportive care needs people with advanced metastatic cancer. But I think that really highlights that there are a lot of similarities and overlaps between people who have early and curative cancers compared with advanced metastatic cancers, but that those needs can present quite differently.

Speaker 2:

Yeah, I mean reflecting on it.

Speaker 2:

I think the simple answer is kind of what you've alluded to is there are some similarities and crossovers, but also they do have some different needs and different unmet needs.

Speaker 2:

So it stands to reason if they have more complex needs, they're likely going to have a different range of unmet needs as well, and so, at the higher level, when we're looking at domains of unmet needs, they might be the same across early stage versus the advanced or metastatic cancer, but once you drill down to the minutiae and explore qualitatively what the lived experience is between these populations, it's vastly different and highly heterogeneous.

Speaker 2:

So I think that the more complex answer, though, is that obviously they have a very variable disease trajectory, a variety of active treatments and maintenance therapies of various levels and lengths of disease control, and so obviously they also have a higher frequency and intensity of engagement with the hospital and the healthcare system. So, just by one example, they are more likely to have higher time toxicity, higher financial toxicity, reduced access to social services and those types of things as well. And so, whilst I think that, as you say, there's greater recognition now of people with advanced or metastatic cancer requiring survivorship support as I'm sure your own experience highlights typically people with advanced or metastatic cancer requiring survivorship support. As I'm sure your own experience highlights, typically people with advanced or metastatic cancer have been explicitly excluded, in some cases, from survivorship care programs, just by virtue of the fact that they have different needs that those services might currently not be able to meet.

Speaker 3:

I mean, I think for me as a researcher and someone living long-term with a metastatic diagnosis, I think what is fundamental is that a lot of people don't understand that most of us are on treatment for life and so, as Nick was saying, we have constant interactions with the healthcare system, turning up regularly for your treatment, for your scans, for monitoring, for your heart, appointments with allied health professionals, for side effects and things. So being on treatment for life but knowing full well that your disease is not curable and so in the UK they talk about this as being a treatable but not curable population and so I think, as Nick said, all those domains that we talk about in terms of the psychosocial, physical, financial and practical, there's a lot of overlap, with people being treated in the early curative setting. But for us I always feel like it's on steroids all those issues that are being faced so I mean fear of cancer recurrence for us presents as fear of progression and it's not an if but a when that will happen. We know that death is a reality. I know a lot of people worry about dying, but for us it is a reality and because we're on multiple lines of treatment, as you know, as one treatment, cancer outsmarts it and stops responding.

Speaker 3:

We move on to another line of treatment, which means that we have an increasing burden of side effects and symptoms and so inevitably you're faced with functional decline rather than things focusing on recovering and improvement. And, as Nick mentioned, I think the financial toxicity is really important. You know, it actually becomes increasingly burdensome as you progress through different lines of treatment and as you perhaps have to reduce your work hours or stop working altogether or think about funding your own treatment if it's not available on the pharmaceutical benefit scheme. So I think it's a different mindset in terms of trying to understand why survivorship is different for people with advanced metastatic cancer. It's ongoing and it's increasing, and I post-treatment, so the services either don't exist or if they are there, they're not actually run appropriately in terms of meeting our needs.

Speaker 2:

Just recently published in preparation for an ASCO presentation this year, we had a story of Andrea's lived experience in that and there was something that she wrote in there that I thought was really helpful for people to understand. I guess the awkward position that people with advanced or metastatic cancer sit within when you can no longer be cured but you're not yet actively dying is sort of the words that I think you used, and I thought that was a really powerful way of highlighting this gap in the care continuum that's currently not really being supported or serviced, when uncertainty and existential crises are common but you're also trying to live life whilst also potentially planning for death, and it's just a very complex scenario that I don't think people who provide a majority of survivorship care services now truly understand or appreciate when they're trying to design their services to support these people.

Speaker 3:

There's a lovely article by a medical oncologist in the US, by Laurie Spuzak, from 2020, and she speaks about the place in between, and I think that's what, nick, you're speaking about. The intent of our care is not to cure, and it's also not end-of-life care. It's to prolong life as long as possible while not actually curing. And this is I have lived for many years definitely not actively dying, but dealing with the effects of treatment and the prospect that things could change very quickly if I stop responding to my current treatment. So, yeah, I think actively dying is a good phase.

Speaker 2:

One of the challenges around sort of service planning for people with advanced or metastatic cancer and I know this is something that probably bothers Andrew quite a lot is this notion of the five-year survival time. This period of time it's quite an arbitrary period of time. If you live five years, you are considered someone who has survived cancer. Obviously, you may only live 5.5 years, but still you're classified as someone who has survived cancer, and I know that in certain cases whether it's metastatic melanoma, metastatic prostate cancer, metastatic breast cancer or myeloma, for example these people live now sometimes in the order of five to eight to ten years, whereas historically there might have been a shorter survival time. And I think that's where I think survivorship care services now need to appreciate that people living with advanced or metastatic disease these days might be what paralleled arguably curative treatment decades past, where now there is a longer stability and a longer disease control. That should be more appropriately supported in the healthcare system.

Speaker 1:

Just to tease out those concepts. Historically, people who would have had cancer that cannot be cured would be potentially referred to palliative care services. But from what you're saying, it seems to me that palliative care service is not necessarily sufficient in addressing the needs. Why the difference? Especially and I'm picking it here because I've observed that certainly in the United States there is a recognition that there is a very close overlap between palliative and survivorship services. So why not palliative care? I think?

Speaker 3:

good palliative care is the huge overlap with good supportive care.

Speaker 3:

I think, unfortunately, palliative care is often viewed as end-of-life care and I think if you're framing it as end-of-life care, then I think a lot of people with advanced metastatic cancer aren't actually at that point.

Speaker 3:

As I said, we're not actively, we're not in that phase where we're actually dying, so our needs are different and I think there is confusion and I think there's a lack of understanding, as Nick was saying, that these amazing treatments mean that we are now living much longer with what remains an incurable diagnosis, but our cancers can be controlled, often for years I'm in my 10th year now.

Speaker 3:

Since my stage four metastatic breast cancer diagnosis, there's been a tendency to have this dichotomy between curative intent and people who then go into end-of-life palliative care. And this is the place in between that Spuzak talks about and which can be extending for years. And I think ideally good palliative care would extend into that space in terms of providing support for pain, social support and everything. But I think often in a resource constrained environment, perhaps palliative care ends up just supporting those who really are at the end of life. So I think that's why Nick and I are very passionate about trying to highlight this place in between where people need support, often for many years and it's not end of life care, and that we need to recognise that this place now exists.

Speaker 2:

I think that there's a really, I guess, interesting challenge with palliative care as well, and that sort of relates to the workforce. So obviously the workforce for palliative care physicians is highly stretched and does not only manage people with cancer but a broad cross section of different illnesses and diseases. And, as Andrea really accurately points out, not only from her own lived experience but also from our various stakeholder engagement for people with advanced somatostatic cancer is the term palliative care for people living with the disease is stigmatized. They almost don't like the idea of acknowledging palliative care because the term is heavily associated with end-of-life care and typically people seem to be more or less more intensely engaged with palliative care once their active treatment options have been exhausted and they are now being provided effectively end-of-life care in the last weeks, months or even the final year of life.

Speaker 1:

So it seems to me that a lot of the issues that you're unpacking here the issues of definitions and recognition of particular groups and particular needs and how giving something a name actually forces you to think about what sits under that name and names are important. I also kind of want to go back to one of the very early comments that you made, Andrea, and you said we add this place because of the success of cancer therapies that created a population of cancer survivors, and success of therapies in a context of metastatic cancer is creating a population of survivors living with metastatic cancer. What that tells me is that the field of survivorship is an evolving field. It is not static, and what we can learn from your work has got implications on survivorship care in general.

Speaker 1:

I think historically, many of you would remember I certainly did where the impetus for development of survivorship care as a discipline was to address the needs of people who are no longer in hospital. And now you're pointing out to the population of people who are in hospital quite frequently they might be coming for the infusions every two weeks or every three weeks or every one week and they might require additional services so they cannot be discharged from their service to manage outside of the cancer service. They will be there and yet they have needs that currently, perhaps, are not very well met. So, aside from the definitions and sort of taxonomy and recognition of population groups, what implications does your work have on how care should be designed? How do we plan services? What is working well, if anything? What is working really poorly and needs to be addressed? What are your top priorities? This is your time to put in a plug for some changes. Give me your wish list.

Speaker 3:

Well, I think what you said about our interactions with the healthcare system as survivors is really pertinent. You know, obviously traditionally survivorship was about supporting people post their treatment and once they left the hospital system. But for people with advanced and metastatic cancers many of us our interactions with the healthcare system are ongoing and I think one of the challenges is that I mean speaking from the metastatic breast cancer space is that the hospital system is set up to support people in a particular way. I mean, historically, we have amazing breast cancer nurses, but they have been focused around people coming into the system through the surgical route, then having chemo and radiotherapy, whereas people diagnosed with metastatic do not come in through the surgical route, so often don't actually meet a breast care nurse and all sort of the model of care that breast care nurses were providing didn't actually work for people with a metastatic breast cancer. Diagnosis and metastatic breast cancer is obviously not just about the breast. It's about where the metastases have gone to, so your bones and your vital organs. So it requires completely different model of care and this you know.

Speaker 3:

In Australia we have done amazing things in terms of developing the role of a metastatic breast cancer nurse, in recognition that our current healthcare system and the way we supported people with breast cancer was not inclusive or recognized people with a metastatic diagnosis who actually came into the hospital system in a different way, used the hospital system in a different way and needed different types of support and obviously across that is the whole complexity that Nick alluded to in terms of the diversity of people with an advanced and metastatic diagnosis.

Speaker 3:

You know, even within breast cancer itself there are multiple different types of subtypes of breast cancer and we have multiple different treatment regimes depending on your subtype of breast cancer and whether you're on first line, second line, third line of treatment. So there are some people who are on oral chemotherapies who have very little interaction with the hospital system and actually maybe feel forgotten and overlooked because they don't have a lot of contact. And then there's people who are on IV chemo or target therapy who come in regularly to the system. So in replanning our healthcare systems we have to take into account that diversity and think about how do these people actually interact with the system? I think it's just questioning our traditional ways of thinking about cancer patients and how they interact with the system.

Speaker 2:

I also think then, just building on that just quickly, because I completely agree with everything you've said and I think models of care around better supporting people with advanced or metastatic cancer is definitely something that will be an important next step, and I think my strong view about who is best placed to deliver survivorship care is everyone. It's not the single domain of a single health profession. It's not the single domain of a single health professional in a particular service. It should be the domain of either all the oncologists that engage with the person affected by cancer, the allied health team, the nursing team and the general practitioner, because all too often there's a lack of role clarity sometimes where people think it's someone else's responsibility and so, for example, the oncologist might think that the nurse or the GP is providing the survivorship care conversation and planning. The GP might think the oncologist has had that conversation, and so very often people seem to just fall through the cracks because there's a lot of assumptions rather than very clear and open dialogue. So even the radiation therapist should be able to approach the conversation of survivorship so that every single person who is affected by cancer, whether they're early stage or whether they're advanced or metastatic stage, should be able to receive at least the initial conversation and screening for survivorship care needs. I think that's a very important requirement so that it's not left to someone else, so to speak.

Speaker 2:

And I guess in my mind, one of the things that we could do better is workforce. Of course we have finite resources. We can't have an incredibly large health workforce as much as I would love that but it's also, I guess, to upskill current workforce of the unique factors and the unique needs that influence and impact people affected by advanced or metastatic cancer. Because even if there are similar needs for example, my background in exercise science we might want to provide an exercise program for early stage disease or advanced or metastatic disease. If that's stage disease, we still need to be able to better work around or periodize our program around chemotherapy infusions or work around people who have bone metastases. So there's all of these unique factors in the advanced or metastatic space that I think even traditional services need to be upskilled and evolved to be able to better support those people in the advanced or metastatic stage of their disease.

Speaker 3:

I agree completely. I think it's across the cancer healthcare supportive care workforce. Everyone needs to sort of be aware of this growing population and have a better understanding of their needs and, as you say, Nick, how they can adapt their existing interventions to meet the needs of this population.

Speaker 1:

I would argue that the same principle probably applies to survivorship needs in general. So in a way, you're shining the light on a sort of broader population needs because effectively that means that the basic assessment of what might be survivorship needs potentially could be a task for anyone in the health workforce and then, depending on what those needs might be, you might then need to identify who's best placed to address those needs, depending on their complexity and severity. So in a way, by looking at a particular population of unique needs, you're going back to the question of what is our responsibility to every person with cancer diagnosis and particular needs. I think that there is a price to pay for developing specialized services, that when you do, there is an assumption that every supportive care needs is handled by the specialized services and then you discover that the services cannot cope with the demand and everybody assumes that it's someone else's job. So going full circle and going back maybe it's everyone's job at the beginning is something that's applicable throughout.

Speaker 2:

I agree and I think, to follow on to your point earlier, what would be most suitable for something to hopefully advocate for, I think in my mind I would love to see governments such as the National Health and Medical Research Council or Medical Research Future Fund target some funding towards us being able to develop survivorship care services that meet the needs and address the needs of people who are with advanced or metastatic cancer.

Speaker 2:

I would love to see more concerted efforts. There have been some programs through the NIH over in the USA and I would love to see some parallel sort of opportunities that will arise through Australia and elsewhere on that front. And, of course, I think there's a good role for organizations like the Clinical Oncology Society of Australia or American Society of Clinical Oncology to try and support and develop models of care that are fit for purpose within the local healthcare context to better be able to support people with advanced or metastatic cancer navigate the healthcare system, for example, because they do have a more complex system that they need to be able to interact with, given their complex needs as well. That's my personal view on what I'd love to see advocated for. But, andrea, you obviously have set up an advocacy organisation, so it's probably a useful time to ask you what your needs are and what's up.

Speaker 3:

So, in terms of what we'd be asking for for people with metastatic breast cancer, we're very aware of the gaps in supportive care needs and especially when it comes to really important things like peer support, so support groups and one-on-one peer mentoring programs and they seem to have sort of fallen between the cracks in the healthcare system and the community cancer supportive care delivery system. Everyone seems to be sort of looking to other organizations in terms of whose responsibility is it? Is it the hospitals? Is it a community organization? So I think it's probably because we are obviously a more challenging group to support, which often means you need to get in a trained healthcare professional to run, for example, a support group. But I think just because we're a harder group to support doesn't mean that the support shouldn't be available. And I think there is just this big question at the moment as to whose responsibility is it and in terms of what are the standards and guidelines around running, for example, good quality metastatic support groups.

Speaker 3:

And I think, wherever we learn in the metastatic breast cancer space you know breast cancer often leads the way here it will be very applicable across other advanced and metastatic cancers and, as we've talked about you know, there's a growing population of people living with advanced metastatic cancer. So you know, the melanoma, the bowel prostate lung there's people living for a long time. So I think these gaps, especially around peer support, have become really evident and it just seems that it's quite difficult for people to connect to each other. So I think for me, you know, if we could get more funding and understanding around how we connect people and allow people to learn from other people with lived experience, I think that would be amazing and also in some ways would reduce some of the pressure on the healthcare professionals, especially around psychosocial support, if people can work together to support each other.

Speaker 1:

I really want to emphasize the point of peer support. It's such an untapped resource and in many ways underappreciated resource. We tend to think that all the solutions in healthcare come from the health system, but people who are most invested in their well-being are the people affected by cancer themselves. And, Andrea, you should really share your story of your advocacy extending or effectively creating a new organization where there wasn't one. Can you just tell us a little bit of sort of what you did and how you got to that point?

Speaker 3:

Yes.

Speaker 3:

So I mean I obviously work as a researcher in metastatic survivorship care and I have my own lived experience, and about a year ago we were running a workshop a co-designed workshop with people with metastatic breast cancer to understand their information, support and advocacy needs very much wanting to understand it from their perspective information, support and advocacy needs very much wanting to understand it from their perspective and one of the key things that came out was what they felt was a lack of voice and ability to speak up for themselves around what they perceived to be quite distinct differences in terms of their supportive care needs.

Speaker 3:

And so the key outcome from this workshop was that about half the people at the workshop went ahead and we launched an organization called Metastatic Breast Cancer Action Australia or NBC Action Australia, the idea being that we can focus specifically on the needs of people with metastatic breast cancer. We know there's a lot of overlaps with people with other types of metastatic cancer, but, to start with, our expertise is in the breast cancer space, and we acknowledge that there are many amazing organizations doing work in the general breast cancer and cancer organizational space, but quite often they have quite a broad remit, and I think there is just this gap in terms of trying to highlight what our particular needs are and a dedicated advocacy organization to ask for better care and better resourcing.

Speaker 1:

So this is just action happening right here before our very eyes. I think the paper that you published together is also an example of taking action where it matters. So can I ask you both how did the idea of the paper emerge and in fact it's not one paper, it's actually a portfolio of papers, building a sort of not just a body of knowledge, but also an advocacy agenda. How did you get to the point of writing papers? What was the process? What was the purpose?

Speaker 2:

Yeah. So I think in the last five years there's been sort of several calls to action now for people to focus on metastatic cancer survivorship. So Professor Thomas Smith over in the USA co-authored a call to action to study metastatic cancer survivorship with his late colleague Terry Langbaum and that was one of the first, or if not the first obvious paper that was really explicitly calling for the need to focus on survivorship care for people with metastatic cancer and that was published in the New England Journal of Medicine. So of course it gained quite a lot of traction. Obviously, with Andrea and her lived experience and also my own lived experience caring for people with advanced or metastatic cancer, there was obviously a clear need that there was a gap in the literature as well as gaps in clinical care. So fortunately the Multinational Association of Supportive Care in Cancer, which will be abbreviated to MASC for simplicity, identified this area of need through its survivorship group, and so Thomas Smith, as mentioned, funded some survivorship fellows to be able to explicitly focus on what can we do to set a standard or an expectation or describe perhaps what best care looks like for survivorship for people with advanced or metastatic cancer. So I was very lucky to be afforded that fellowship to be able to lead that work.

Speaker 2:

And immediately we formed a team of researchers from all around the world, so some from the high resource countries, some from middle resource countries, people with lived experience and across a range of different disciplines, to come together and really try to tackle this problem on global scale. And so all three of us are part of that group, obviously, and we have been co-authors on this work together, which has been very nice. So I guess that was the formative focus was led from Thomas Smith's editorial. We then published our own editorial, which, andrea, led around a call to action for research into metastatic survivorship and then led towards really trying to develop this sort of global set of standards or practice recommendation for people affected by advanced or metastatic cancer.

Speaker 2:

And so, just quickly, I think the reason why it's important for me to highlight language here, I purposely say people affected by, because it's important not just to focus on the person with cancer but also their caregivers, who are also partners in the process and also require survivorship care themselves. And so that's really what this work tried to outline and I guess, by setting a standard, it now allows people with service provision, healthcare provision, as well as the people who are the cancer survivors themselves, who need to advocate for their own care. They now have a better understanding of, perhaps, about what sort of things they could be asking for, what sort of things they could be receiving, or what sort of things need to be planned for in the health service at the first place.

Speaker 3:

Yes, and I mean Nick, you were integral to this work, and I mean and you've talked about the initial work, the review, but I mean that was then followed by your work around identifying all the different cancer frameworks and then an extensive Delphi process to actually identify the standards and get consensus on those standards. So it's been a huge piece of work and, I think, a really important one, as you say, in developing a framework that can be used for advocacy, to identify needs across different countries, to set goals and to plan for research and service delivery to fill those gaps.

Speaker 2:

And I think it's very important to highlight as well that this is just the start. I think there are some comments I've received in the past that it's almost as if we think this is the answer to all problems. Actually, it's the very beginning. It's really signposting that there are a lot of parallels between early stage and advanced or metastatic stage cancer survivorship. This is signposting this subpopulation as a priority area that really needs some concerted efforts and focus.

Speaker 2:

And, of course, this product for the standards and practice recommendations, as Andrea said.

Speaker 2:

Of course, this product for the standards and practice recommendations.

Speaker 2:

As Andrea said, they are set for a global context and there are some generalizations that needed to be made when we were preparing it, as well as some language that we needed to try and harmonize across the world, and so this is the starting phase and then future efforts will aim to contextualize this in the realm of different cultures, different resource settings, and so when I say resource settings, you can still have a lower middle resource communities in high resource countries.

Speaker 2:

So it's really trying to unpack the how these standards and practice recommendations can subsequently move forward towards implementation and how we can then best use them. And so I guess, in closing, for my comment now is that we did explicitly try to have this work translated to 14 different languages around the world to try and allow different groups around the world to access this work as a starting point, to start having those conversations with healthcare administrators and management, to start signposting this issue to governments and health industries so that we can actually start trying to better service plan and service deliver and obviously provide optimal or best practice care for people with advanced or metastatic cancer.

Speaker 1:

So this work really emphasises that you're taking a very global approach to this issue. What do you see as the main challenges when it comes to global issues in cancer survivorship in a metastatic context?

Speaker 2:

One of the prevailing differences that I've noticed is a huge difference not just in the health systems that operate around the world, but also the workforce. So I think, in certain countries and certain healthcare systems operate around the world, but also the workforce. So I think in certain countries and certain healthcare systems, we have the luxury of having highly specialized workforces that work in subdomains and areas and are able to provide highly specialized care, but actually, in a lot of the low resource countries or low resource communities, sometimes you have a very singular workforce. There might be nurses that are spread very thin, that are trying to provide a lot of survivorship and supportive care needs, and not just always just with cancer. They might have to work across multiple conditions, and so I've noticed that there is a lot of differences in workforce, and so, obviously, the capacity or the capability or the ability to be able to provide best practice care looks different around the world on the premise of what resources do they have available for them now. So some of the benefits of this work from a global context, though, is that each individual context is able to identify what they are currently doing well, what they might be able to want to do next. This might be low-hanging fruit that they might be able to adopt in the immediate sense. And also, then, what are the reach targets, what are the things that we need to invest in, what are the long-term goals? And every different nation around the world will have a different starting point and a different capability or near-term goal that they can achieve.

Speaker 2:

I think one of the other things, though, is that different regions around the world have different cultural, religious and spiritual relationships to advanced or metastatic cancer and, I guess, care towards, not necessarily the end of life, but that sort of transition phase, and it's acknowledging and respecting that. But what I would acknowledge as well is that we haven't done the work yet to really characterize that, but I think it goes to something you said earlier as well. Object is that different, like palliative care in the US is slightly different to, say, palliative care in the UK or Australia, and so we've tried our best to harmonise the work as best as possible, recognising that local contexts will need to be able to adapt this work to suit their needs and then, hopefully, use it as an ingredients list, for lack of a better description, to be able to piece together what they can do. Well, I'm not sure what your experiences are there, andrea?

Speaker 3:

I mean, obviously taking a global perspective is really important, but acknowledging that you know the huge differences across the globe in terms of resourcing and I know from just my interaction and advocacy in the metastatic breast cancer community internationally in many countries the challenges are just around accessing treatment, and supportive care gets, you know, is so much further down the list. But I suppose, as we say, this is an amazing framework that provides the standards that, once countries get to the point of being able to keep people living longer in the advanced metastatic setting, that we have clear guidelines as to what good quality care will look like.

Speaker 2:

And I think something that you work in, andrea, is obviously peer support, and I think that is something that's going to be something that should be able to be hopefully leveraged really strongly in those sort of lower middle resource communities or countries, and I think we also have a lot to learn from them. Yes, I think sometimes there's an assumption that we are the holders of all knowledge, but actually I think those that have to make do with so few resources have a lot to teach us on how we can perhaps make a sustainable healthcare system in countries like Australia as well.

Speaker 3:

I think you're exactly right. In fact, I mean, I have spoken to people who've rolled out peer support programs in low and middle income countries and I've said I don't know how you've managed to do that, because we seem to have such challenges doing it in Australia. But I think it comes down to a different mindset and a different way of valuing peer support, and especially when you say you know the resources are limited and community is often really important in some of these countries and we seem to have lost that in some ways in very westernized countries such as Australia.

Speaker 1:

Yes, there's much to be learned here. So you've outlined both a huge amount of work that is really transformational in the field of cancer survivorship. So what's next for both of you in your work in this area?

Speaker 3:

Well for me.

Speaker 3:

I mean, I've done a lot of work around improving access to metastatic support groups for people in Australia.

Speaker 3:

You know we've identified the value of them and barriers to implementing them, and I think one of the key findings that we found was the importance of having a training program for healthcare professionals to run these groups so that they're run safely both for the people attending and for the people who are the health professional who's delivering the group.

Speaker 3:

Our goal is to identify standards for the support groups and then to develop an appropriate training program that can be rolled out initially in the breast cancer space a metastatic breast cancer space but then currently aren't accessible to people with an advanced metastatic diagnosis, to understand how we can adapt them to make them suitable for people who obviously want to connect with someone with the same diagnosis and now that they're living for many years, I think it's quite appropriate that they do. My other interests I have I'm very interested in the metastatic prevalence work. I've been contributing to that and I think that's really important in understanding the size of the population that you're trying to provide services to in terms of need and also identifying research gaps, and Nick's leading some work in that as well, which I think is really interesting yeah.

Speaker 2:

And I think, from my perspective, I definitely would like to start focusing on developing models of survivorship care that are best able to support people affected by advanced or metastatic cancer, because not all models of care necessarily optimally suit these people. I think, even in a conversation with people who are in the advanced or metastatic stage, some people around the world prefer the term enhanced supportive care instead of survivorship care, for example, because of how that particular cancer identifies with it. Some people with multiple myeloma do not have an affinity with the word survivorship, for example, so it's trying to understand the nuances and languages, sometimes even between different types of cancers and the people that are living with those diseases. I'd also like to be able to explore, I guess, a greater focus on research in survivorship care targeting people with advanced or metastatic cancer. So historically, people with advanced or metastatic cancer are not included in survivorship care research, perhaps because there are more complex disease trajectories so that researchers might view them having more confounding factors in their research, and I think that we need to get over that.

Speaker 2:

We have statisticians that can deal with these problems and I think it's doing a disservice to these people, if not our own professions, not focusing on that when we design research, but ultimately as well, I think one of the biggest things I'd like to overcome is increasing access to these services and also increasing access to targeted services for these people.

Speaker 2:

Very briefly, in my own background in exercise science, people with bone metastases have been excluded from receiving exercise programs for fear of safety, a fear of fracture. More often than not, it's the clinician's fears, not necessarily the person living with the disease. It's not until we were able to demonstrate safety that some of these people were now able to be referred to programs, and so sometimes, I think, impose our own personal biases on these people and, by extension, decline them access to a service they need, based on our own personal views rather than the reality or the science. And so I'd like to see some shift in that thinking and ultimately, I guess, with the MASC and ASCO work, which is the standards and practice recommendations that we've published, I really want to explore, I guess, the contextual factors around the world and also develop some supportive products and toolkits with that to allow centres to understand how they can implement it in their local setting.

Speaker 1:

These are both areas of work that are very important and incredibly complementary, so I certainly look forward to learning more of what you'll achieve over the next few months and years. For now, thank you for all the work that you've done in this area. Thank you for shining the light on the importance of survivorship in a metastatic setting, and congratulations on the successes so far. Thanks for joining me today. Thanks, bogda.

Speaker 2:

Thanks so much, Bogda, Thanks Andrea.

Speaker 1:

That is all for Supportive Care Matters, a podcast created by me, Bogda Koswara, 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.