Buying Time: Incurable Prognosis, Temporal Uncertainty and the Costs of Metastatic Breast Cancer.

1
Introduction
Novel treatments such as immunotherapies and targeted therapies are extending longevity for some incurable cancers, such as metastatic melanoma, lung cancer and breast cancer. For example, median survival for patients diagnosed with recurrent metastatic breast cancer nearly doubled from 21 to 38 months between 1990 and 2010 (Caswell‐Jin et al. 2018). Although these survival gains are encouraging and offer the hope of longer futures, living longer with incurable life‐limiting cancer introduces new relational, affective and financial challenges. These include prognostic uncertainty (Nipp et al. 2017), emotional distress (Mollica et al. 2022), strained relationships (Lewis et al. 2024) and financial toxicity (Mollica et al. 2024). These challenges often have long‐lasting effects on individuals' quality of life. And although some can be anticipated, many are unexpected and can incur substantial financial, physical and emotional costs.
Although the evolving cancer treatment landscape is reconfiguring expectations for people with incurable cancers and their families by increasing survival time (see Kenny et al. 2017; Dew et al. 2024), there is still no expectation of cure for the vast majority of those diagnosed with metastatic breast cancer. The goal of treatment is to limit cancer progression while also ensuring that the person's quality of life is not unduly compromised, enabling them to live as long and as well as possible. Yet living longer with incurable cancer often entails many ‘high stakes decisions’ as people navigate and manage relationships, identities, cancer symptoms, healthcare systems and finances—with considerable emotional, physical and financial costs throughout (see Lewis et al. 2021; Mrig and Spencer 2018).
Here, context plays an important role. Like many leading economies around the world, Australia is facing increasing wealth inequality, with a shrinking middle class, declining home ownership, increasingly privatised provision of healthcare and rising cost of living (Cigdem‐Bayram et al. 2024; Duckett 2020). Although Australia's universal healthcare system, Medicare, provides free or subsidised medical and hospital care to citizens, private provision of healthcare is expanding (Duckett 2020; Collyer and Willis 2019). Individuals can choose to purchase private health insurance to cover some of the costs to access care privately, without giving up their Medicare entitlements. Yet not all costs of care are covered by either public healthcare or private health insurance. Recent research suggests that high ‘out‐of‐pocket’ costs incurred by many Australians with cancer are increasing financial strain, particularly for those with constrained financial resources (Goldsbury et al. 2024). Variable costs and unequal access to some new treatments and tests—with some subsidised or available only on compassionate grounds or via clinical trials—contribute to and compound the uncertainties of living with metastatic cancer.
An individual's social and financial circumstances can have a profound influence on their experience of a terminal prognosis, their access to treatment, healthcare and genomic profiling (which can incur out‐of‐pocket costs), their approach to planning for the future and the extent to which cancer affects their social and professional lives (Greco 2022). This is especially the case when people live beyond their anticipated prognosis, where financial and social costs can accumulate unexpectedly. Mantras such as ‘hope for the best, prepare for the worst’ are often drawn on in medical and societal scripts about metastatic breast cancer to balance hope and acceptance in orienting towards the future (Mori et al. 2019). For those diagnosed with metastatic breast cancer, the future is both knowable—their cancer is likely to limit their life span and, eventually, kill them—and unknowable—they do not know for how long or how well they will live. Living with incurable breast cancer thus requires constant anticipation of multiple possible futures as well as a continual re/calibration of hopes, expectations, organisation and planning. Thus, a diagnosis of metastatic cancer ‘disrupts the temporal order’ of expected lifespan and can haunt every dimension of living under the spectre of incurability (Flore et al. 2023, 2; Broom et al. 2018).
In this article, we extend this concern with the temporal order beyond prognosticated temporal horizons to examine how people with incurable metastatic breast cancer think about and experience time in relation to their uncertain futures. We draw on qualitative research involving multiple in‐depth interviews with women living with metastatic breast cancer to capture their experiences over time.

2
Background
2.1
Prognosticating Metastatic Breast Cancer
Although average life expectancy for metastatic breast cancer in Australia is about 2–3 years (Lord et al. 2022), new treatments such as targeted therapies mean that an increasing cohort of people are living more than 5 years postdiagnosis (Caswell‐Jin et al. 2018; Howlader et al. 2018). Although acknowledging that individual experiences of breast cancer are diverse, for those diagnosed with early breast cancer, trajectories tend to follow relatively linear and predictable paths from diagnosis through treatment and towards recovery, whereas those diagnosed with metastatic breast cancer generally experience more varied and unpredictable trajectories. This is due to variable treatments, unpredictable treatment responses, palliative care options, the incurable nature of the cancer and ongoing uncertainty about prognosis and illness progression. A diagnosis of incurable cancer disrupts both normative anticipations of the linear unfolding of time and its smooth rhythm across daily life and the life course (Flore et al. 2023; Greco 2022). Thus, time becomes an increasingly precious resource, one to be used and spent well (Bryson 2007; Fisher and Goodley 2007). How a person chooses to spend their time and what activities or roles are privileged may shift with a life‐limiting diagnosis—and markedly so with a diagnosis of metastatic cancer. Accordingly, scholars have suggested that ‘the distinctiveness of life with metastatic cancer … needs to be more explicitly recognized’ (Bell and Ristovski‐Slijepcevic 2011, 645).

2.2
Temporalities of Incurable Cancer
In recent years, a growing body of social science research has emerged focused on the temporal dimensions of incurable conditions, including advanced cancer (Kenny et al. 2017; Kirby et al. 2022; Flore et al. 2023; Olson 2011). Together, these studies provide rich insights into issues including affect, embodiment and morality, showing that the lived experience of advanced cancer is shaped by sociocultural norms regarding ‘right and proper uses of time’ and expectations and anticipations linked to longevity, such as hope, positivity, optimism, coping and adjustment. A central theme across these studies is the idea that the lived experience of incurable cancer is one of living in between—that is, suspended between past/future or between survival/death (see Spoozak et al. 2020; Broom et al. 2018). This liminality has thus been characterised as a ‘precarious place’ (Kirby et al. 2022) and as a time of waiting (Broom et al. 2018); waiting for the disease to progress, to feel better or worse, for the arrival of death or remission or sitting in doctors' waiting rooms for tests and treatments.
This living in between is not experienced equally; Kirby et al. (2022) have drawn attention to inequities linked to resource allocations that shape optimistic futures or the accomplishment of longevity, noting implications both in terms of patienthood and disease progression. In a similar vein, Flore et al. (2023) have highlighted that the ways in which people with advanced cancer cycle through (and beyond) prognosis are linked not only to clinical innovations but are also shaped by when, how and to whom these clinical innovations are offered, which intersect with people's personal, social and economic circumstances. Further, the experience of living with advanced cancer is also shaped by cultural imperatives, for example, the dual imperatives of optimism and authenticity, which can collide to create specific normative pressures that impact how those with advanced cancer make the most of their limited time (Broom et al. 2022; Dew et al. 2024; Williams Veazey et al. 2025). Although this body of research has focused on the various complications of living in the face of a future made precarious by a life‐limiting diagnosis, as well as some research on the promises and possibilities of extended time due to therapeutic innovations, less is known about the realities of living beyond prognosis—an issue that is becoming increasingly pronounced in the wake of new therapeutic options (see, for exception, Dew et al. 2024).

2.3
Incurable Cancer Timescapes
Social scientists have long been interested in experiences of time, both in relation to specific experiences of health and illness, and beyond them. For example, scholarship on fertility and reproduction has explored ideas of ‘fertile time’ and the ‘biological clock’ and how they may shape experiences of lost, wasted, regretted time, or experiences of time gained through technologies such as egg freezing (Waldby 2019; van de Wiel 2015). More generally, Adam (2008, 7) proposes the idea of ‘timescape’ as ‘a complex, multidimensional phenomenon that involves biographical time, which covers that lifespan from birth to death, generational time, which provides links and attachments across generations of kinship relations and historical time, locating individual and family lives in the wider frames of external events, environments and political landscapes’. Extending this idea, Holland (2011) proposes a timescape as ‘a temporal vista that brings into focus a particular temporal view of the world’ giving ‘insights into the dynamic unfolding of real lives’ (para 1). Rather than emphasising time as linear and measurable, the concept of a timescape emphasises the complexity and multidimensionality of time (see Zin et al. 2023) and is thus of utility for thinking about the inherent complexities and multidimensionality of living beyond prognosis.
Timescapes are useful for thinking about how people with metastatic breast cancer live with the possibility and/or reality of living beyond prognosis and how these shape their expectations and hopes for the future. Rather than a concern for time as unfolding from the point of diagnosis through treatment to the end of life, the idea of timescapes allows us to explore the multiple layers of time embedded in possibilities and realities of living beyond prognosis. Thus, timescapes enable us to go beyond considerations of quantified clock or calendar time—such as the number of months or years lived with metastatic cancer—to more closely examine the specificities of lived ‘subjective time’ (Bell and Ristovski‐Slijepcevic 2011). The timescapes concept enables us to gain a better understanding of time as it intersects with the value systems and identities of those living beyond prognosis.

3
Methods
3.1
Study Design
This article draws from a qualitative study investigating experiences of women living with metastatic breast cancer (Lewis et al. 2021). The broader study also included interviews with health professionals who provide care and support to this group that have been reported elsewhere (see Franklin et al. 2024). Metastatic breast cancer is breast cancer that has spread to another part of the body, such as the liver, brain, bones or lungs. A social constructionist approach guided our exploration of how participants made sense of their experience in relation to societal expectations about living with cancer. Such an approach recognises that knowledge and experiences of prognosis are constructed within sociocultural contexts and through the cultural discourses that are available. Up to three semi‐structured in‐depth interviews were conducted with Australian women living with metastatic breast cancer over a 12‐month period. Our research team brought together diverse perspectives and expertise across sociology, qualitative research, health services research and medical oncology and included a researcher with lived experience of metastatic breast cancer and a breast cancer medical oncologist with expertise in the supportive care needs of people with metastatic breast cancer. Ethics approval was granted from the University of New South Wales Human Research Ethics Committee (HC17282).
Purposive sampling and community recruitment strategies were used to capture diversity in women's experiences of living with metastatic breast cancer. Recruitment occurred through flyers, advertisements and presentations in cancer and breast cancer organisations, peak bodies and cancer wellness centres, as well as direct recruitment through a range of health professionals and cancer care clinics and snowballing. These various recruitment methods ensured representation of women from across Australia, at different stages since metastatic breast cancer diagnosis, receiving different treatments and accessing care and support in different settings (e.g., public, private, clinic, hospital and community‐based). Interested participants were provided with an information sheet outlining the purpose of the study and what participation involved.
After informed verbal or written consent was obtained, participants were interviewed by S.L., a White cis‐woman, at a time and place of participants' choosing. Interviews were conducted either in person or over the phone, using a guide developed from a review of the literature, discussions with the research team and input from a metastatic breast cancer consumer. Questions explored experiences of cancer, strategies for managing health, allocation of resources, interpersonal relationships and interactions with health professionals. Where possible, each participant was interviewed on two further occasions during a 12‐month period to examine the interlinked temporal, relational and financial facets of living with incurability over time and how experiences changed. Four women participated in only one or two interviews. Interviews ranged from 30 min to 2 h, were audio recorded, transcribed in full and deidentified using pseudonyms. Data collection occurred between August 2017 and January 2020.

3.2
Study Sample
In total, 38 women, aged 36‒74, participated in the study. Participants were diverse with respect to length of time since metastatic diagnosis (1–23 years), treatment type, types of services used and socioeconomic status. Despite efforts to include participants with diverse ethnic and cultural backgrounds, most participants were Australian‐born with European heritage. Nine participants were receiving government financial assistance and/or living in areas of high social disadvantage. At the time of their interview, 18 participants were receiving care in the private health system, 14 were receiving care in the public health system, five used a mix of both, and one was not using public or private health services. Most were receiving care from their medical oncologist, with some also using palliative care services; three were not receiving any biomedical treatment, and about half were using complementary medicine or therapy.

3.3
Data Analysis
We conducted thematic analysis, following Braun and Clarke's (2022) reflexive approach. After several phases of analysis, we became increasingly interested in temporal and economic aspects of participants' experiences of living beyond prognosis. To this end, interview transcripts were read and reread by S.L. and M.F. to extract data specifically related to prognosis, including living with/beyond prognosis. These data were then organised into descriptive categories related to ‘time’, ‘values’, ‘resources’ and ‘relationships’. Through an iterative process, these categories were developed into codes and compared across transcripts to identify different patterns for participants across time (e.g., between first, second and third interviews) and between participants. These codes were organised into higher‐order, cross‐cutting themes and discussed with the wider research team. Our multidisciplinary team met regularly throughout the analysis process to discuss interpretations and themes. Our diverse perspectives (sociological, clinical and lived) illuminated different readings or interpretations of the data. This helped illuminate personal and clinical complexities of living in and beyond prognosis, within broader sociostructural constraints. We also made sense of these themes by returning to theoretical and empirical literature on timescapes and temporalities and reflecting on our own participation in the co‐construction of the data through a process of reflexivity. Throughout the analysis, we reflected on how our respective positions and experiences influenced our interpretations, regularly questioning our assumptions and considering alternative readings of the data. Through analysis, five themes were constructed. These are explored in the following sections.

4
Findings
4.1
Quality Time: ‘Time to Do Things for My Family and Myself’
While living with the knowledge of a contracted lifespan, participants felt greater responsibility and urgency to create quality time. That is, an incurable, life‐limiting prognosis and the shorter life duration that likely entailed acted as a cultural pressure on women to spend time well (Adam 2008). As Rita articulated, the challenge of how to spend time in relation to family, work and self‐care became a critically important consideration in the context of life‐limiting disease:I decided [that] if I had five years or less to live, I wasn't going to spend it working for [name of employer] anymore. It was time to just do things for my family and myself.
(Rita, 50s, 5 years since metastatic diagnosis, Interview 1)

Instead of spending time working, which she perceived as benefiting someone else, she decided to instead focus on herself and significant others. Like Rita, many participants described the need to reassess how they spent time, emphasising the importance of directing their time towards relationships and activities that were personally meaningful. Anna articulated this recalibration of time as giving her the ‘freedom’ and a greater sense of agency to be ‘selective’ in how she spent her time.It makes me more selective, definitely. Yeah, I don't do things just because I feel obliged to do them. Well, not many. Mostly I do things because I want to do them, and it gives you a bit of freedom.
(Anna, 60s, 4 years since metastatic diagnosis, Interview 1)

Similarly, Heidi described how her diagnosis was the impetus for her to ‘make life better’, redirecting her time away from the many additional unpaid hours she spent working as a teacher and towards travelling, dating, forming new relationships and discovery. Like Rita, Heidi described how her employment was backgrounded so that other aspirations to ‘be her best self’ could come to the fore:Now you make decisions that are the best thing for you. You use all this life knowledge that you've acquired in the journey … and just be the best you that you can be. I've even branched out and found myself a new fella who's just lovely. So, that side of things, the travel and finding a relationship after four years … and getting work sorted to a point where it's more manageable.
(Heidi, 50s, 4 years since metastatic diagnosis, Interview 1)

What was irreconcilable in participant accounts was the imperative to maximise the length and quality of one's own time, alongside the desire to secure financial futures for their families and conserve financial resources accordingly. The pursuit of securing good (future) lives for their loved ones through conserving financial resources (in the present) impacted participants’ choices:There is a part of me that's thinking, ‘Why are you working now to ensure that they're going to have a good life when you're dead? Why don't you not work and enjoy some of the money that you've accumulated?’ But I'm not made like that … I'm not frivolous and certainly don't want to be, and I still feel responsible for the family.
(Kate, 50s, recently diagnosed with metastatic breast cancer, Interview 2)

As the above excerpt makes clear, participants were concerned about the lives their families would live after they had died. Yet, this was also accompanied by the knowledge that the sacrifices participants made in the present would be enjoyed later, likely in their absence.
Participants' decisions of how and where to spend time (and money) were always made in relation to others (i.e., partners, children, friends), especially with children and grandchildren. At play in these accounts were desires to simultaneously care for and create ‘normal lives’ for their children while also making extraordinary memories that would endure beyond their deaths:… it is important for me to be close to the grandchildren, to spend time with them, have fun times with them, because then they'll remember the times that we've spent together.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 2)

Balancing one's desire to ‘make the most of the time left’ against giving their children ‘normal lives’ was not straightforward. Tammy felt a strong sense of personal responsibility to support her teenage daughters, financially and emotionally, now, to set them up for an impending future without her:I remember saying to myself at one point, ‘The best thing I can do for my girls is to give them as many normal years as possible’. And I think we're achieving that … I used to stress a bit about money, but now I really just think if there's a little bit less that I'm leaving to the girls, that's okay because I'm using it to take them on a holiday or to enjoy time with me. Yeah, time together.
(Tammy, 50s, 3 years since metastatic diagnosis, Interview 3)

The above excerpt illustrates the tensions between continuing ‘as usual’ and engaging family in meaningful and memorable experiences that could feel like ‘cramming’ a lifetime of parenting into the uncertain window of time left (Bell and Ristovski‐Slijepcevic 2011).
It became clear that the possibility of living in new ways (often with less income and more expenses) was heavily influenced by social position, biography and material resources. For Rita, being able to choose what she ‘wanted to do’ was something that she would not have afforded when she was younger, with fewer resources, or while raising a young family:I feel very privileged. And to have had the time and the money to do just a few big things which were mostly family related. That was just very good. I couldn't have done it 30 years ago. It would have been absolutely impossible.
(Rita, 50s, 5 years since metastatic diagnosis, Interview 3)

In contrast to the accounts above, for participants who reported financial disadvantage, temporally managing cancer was one more thing to do on top of their other responsibilities, such as paid employment and childcare. These participants outlined how the normative scripts of cancer as a transformative experience in which one should ‘live life to the fullest’ could be alienating or marginalising. For example, Carol (below) had been forced to stop fulltime employment due to extreme fatigue and brain fog associated with cancer treatment and was now only able to work in a part‐time, low‐paid position:… in [Breast Cancer] magazines, people will say, ‘I've done this. I've got a whole new perspective in life. I'm going to go and enjoy it to the fullest’, and I just think ‘maybe they've got a lot more money than me, so therefore they're not struggling to pay bills, not stressing about how much money is in the account, somehow they've managed to not have that shadow in the back of their mind’.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 1)

The extent to which one could ‘live your best life’ was highly dependent on material wealth, as Carol explained in a follow‐up interview:You think, ‘Okay, live your life’, but you've still got to live your life with the dollars you have. You can't magically come up with some more money when you've reduced the amount of work you're doing.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 2)

4.2
Out‐of‐Sync Timing: Living at a Different Tempo
Many participants across the study described how their loved ones recognised that due to their diagnosis, they should live differently. For example, Rebecca explained how her husband encouraged her to reduce her work hours:I just don't work full‐time because I want to enjoy life. I don't want to spend the rest of my years stuck in a job that I don't want to be at. So yeah, my husband says, ‘No, just enjoy your life’.
(Rebecca, 50s, 4 years since metastatic diagnosis, Interview 1)

Yet, participants also reflected on how the altered timescapes that accompanied a metastatic cancer diagnosis created out‐of‐sync timing with family members (see Adam 2008). Participants' accounts suggested that the passing and rhythms of time, what counted as quality time, and its prioritisation often differed between themselves and their loved ones, partners or children. Vicki, across her three interviews, described a sense of urgency that time was running out. However, her sense of time speeding up and her desire to ‘go and do’ things was not shared by her husband.… when time passes. I go, ‘Okay, well, that was 12 months. So, that's sort of a minus one’. That's how you can look at it because you know that that means you have got a restricted level of life left … I'd really just love us to go and do other things. Go and travel or go and see the country. I've got more of an urgency to want to do more, and he can see that, but it's frustrating for us at the moment to try and do it.
(Vicki, 50s, 10 years since metastatic diagnosis, Interview 3)

Similarly, a misalignment is evident through Carol's description of her desire to spend time with her husband, adult children and friends and her longing for friends that had more availability:So, they basically want to get on with their lives. But, for me, it's [time running out] in the back of my head all the time.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 1)

Others felt pressure to bring their temporal experiences into alignment with the expectations of others (Ward et al. 2022). Melissa, for example, described the incongruence between her and her partner in how time was lived. Although for her partner, her diagnosis was the catalyst for seeking to create peaceful and happy moments through organising overseas holidays, Melissa, who had very recently been diagnosed, was still feeling overwhelmed and stressed. Her account illustrates the conflicting logics between her partner—‘do more with the time they have’—and her own desire for a slower tempo:My partner wants to organise another trip … And as wonderful and nice as it is, it's another stress. I don't want to leave my cocoon of home. They don't get that. They think I need to be going out and seeing and experiencing life and doing … I've tried to explain it. But it's almost like we're both on parallel lines where he's saying, ‘Oh yeah, sure, I understand you don't want stress, but it'll be a relaxing holiday. It'll be wonderful. It'll be so good for you’. So, I can see the logic behind saying, ‘Come on. Let's do something. Let's not sit at home and dwell on death and dying and how unwell you are and the treatment’. I don't want to dwell on it, but I've got no energy to do anything either.
(Melissa, 50s, recently diagnosed with metastatic breast cancer, Interview 1)

Sandra had the opposite experience of having to put plans to travel on hold after her son moved across the country to her city to be close to and spend time with her:… my son put in for a compassionate transfer, and so he's come over [here] with his wife and child … And his intention is to be here for 12 months. So, there's things I'd like to do, but I've sort of got those on hold as far as travelling is concerned until, you know. It seems a bit funny, you come here, ‘Well sorry, I'm off’.
(Sandra, 50s, 4 years since metastatic diagnosis, Interview 2)

In both of these instances, we see how the pressure to ‘make the most of time’ sits at odds with some participants' experiences of disease and treatment, which left them with insufficient energy to socialise, engage in new activities or travel. In Adam's (2008) terms, participants' timing did not always align with the timing expected or imposed by others.

4.3
Making More Time: ‘I'm Going to Try Everything I Can to Live as Long as I Can’
Women expressed a strong desire and sense of duty to pursue more time but discussed the associated inequities and costs (financial, relational and existential) that this entailed. The responsibility to live ‘as long as possible’ was strongly tied to participants' identities as mothers and caregivers and the presumed duty to ensure the happiness, stability and security of children and grandchildren into the future beyond them. Endeavouring to extend their time to ensure that children reached adulthood without the pain, suffering and disruption of losing their mum was a recurrent theme, especially in the absence of someone else who could step into the incomparable role of a mother. As Ellen, with younger children, discussed:My husband's great, but he's Dad. He's not a mum, and mums do certain things with their daughters. So, who am I going to get to do those mum things with my daughters? It can't be my sisters because they're on the other side of the world.
(Ellen, 50s, 3 years since metastatic diagnosis, Interview 1)

Paradoxically, pursuit of more time could be a costly and time‐consuming project for many, one that could compromise these women's attempts to live well in the present. As the following quotes illustrate, some participants devoted large amounts of time, money and energy to researching, seeking out and accessing experimental treatments and clinical trials and engaged in strict diet and exercise regimes and various complementary therapies.I don't care how much things cost when it comes to doctors and reviews and the scans and stuff like that. If it's something I need to get done, I'm willing to pay for it. That's how I am.
(Elma, 30s, 1 year since metastatic diagnosis, Interview 1)
There's so many things. You can just keep adding up things constantly. You've got to make sure that your diet is correct. So you've got to make sure everything's right, the foods that you eat and all that sort of stuff. There's multivitamins to try and make you get better. I feel like there's just a constant dole out of money happening and people just don't realise.
(Amber, 60s, 3 years since metastatic diagnosis, Interview 1)

Some participants talked about the pressure from others to do whatever it took (and at whatever cost) in pursuit of longevity, even when it was having a very negative impact on their health.Your family and friends want you around longer so you're always going to try and do whatever is the best thing for you, whether it costs you $200 or $200,000.
(Amber, 60s, 3 years since metastatic diagnosis, Interview 1)

Almost all participants raised concerns about affordability and cascading costs in relation to treatment and healthcare. Many talked about their concerns that high‐cost treatments not subsidised by the (Australian) Federal Government's Pharmaceutical Benefits Scheme (an Australian Government scheme that subsidises prescription medication for Australian citizens and permanent residents) were exclusionary for many participants. As Kylie and Amber (below) state, although these high‐cost targeted drugs offered the tantalising prospect of extending life, they were out of reach:I can't [afford it]. But it would be a possibility if I was allowed to try the drug [through the Pharmaceutical Benefits Scheme] to see whether it worked or not. It would just give me extra time.
(Nancy, 60s, 5 years since metastatic diagnosis, Interview 3)
I didn't do it because it was too much money. We just tried something that was cheaper.
(Kylie, 40s, 4 years since metastatic diagnosis, Interview 3)

It was not only treatment that was out of reach for some participants but also other necessary aspects of disease management such as scans, doctors' appointments and blood tests:From your scans, your bloods, your doctor's appointments, you go and have a PET scan, you might go and have an MRI. They are all costing money and when you're doing them every six weeks it adds up.
(Amber, 60s, 3 years since metastatic diagnosis, Interview 1)

Thus, time was conceived as something that could be bought. Being unable to afford these expensive treatments and other aspects of care was cast as potentially losing time, bringing forward death and potentially missing out on future ‘breakthrough treatments’ that might be in the drug development pipeline. As Anna describes, new drugs were seen as on the horizon and thus were almost within one's grasp:I think there's some more breakthroughs in the pipeline, from what I gather … So, I'm relatively optimistic that if I can hang in there that I'll be able to benefit from some of that stuff.
(Anna, 60s, 5 years since metastatic diagnosis, Interview 1)

4.4
Time Mis/Calculations: ‘The Longer You Live, the More the Money Goes Out’
Although participants knew that cancer would likely shorten their life expectancy, what was less certain was how long (and how well) they would live for. Living with this uncertain certainty created a tension for participants in how to spend and/or conserve finite economic resources. In other words, financial concerns were an omnipresent spectre, much like the cancer itself. Worries about present and future financial situations accumulated over time, as illustrated by Joyce and Denise, who had been living with metastatic cancer far beyond their initial prognosis:If you've only got a limited amount of money and you don't know how long you're going to be alive for to use it … It's a bit of a question mark … Finances are always a concern … It's a thing that needs to be constantly thought of.
(Joyce, 60s, 10 years since metastatic diagnosis, Interview 1)
I do keep in mind what one of the ladies said to me. She said, ‘Don't use it all up at once because you might last another 10 years’. I've got to be a little careful … I don't really want to be sitting at home dying because I can't afford to do anything else. That would really suck.
(Denise, 60s, 10 years since metastatic diagnosis, Interview 1)

All participants talked at length about the practice and process of contingency planning: the challenges of planning for multiple possible futures and ensuring that they had the financial resources for whatever might unfold. Participants sought to ensure that their families were financially secure in these multiple possible futures, and putting their family in a financially precarious position had moral ramifications:We've still got a fairly chunky mortgage that we're trying to get through … there is that fine balance between saving and making sure that my husband can afford everything after I'm gone.
(Rebecca, 50s, 4 years since metastatic diagnosis, Interview 1)

Others, like Kylie who was currently looking for part‐time work, described across her interviews feeling like a ‘financial burden’ and ‘drain on the finances of the family’:So that's probably the only bad thing, worrying about the money all the time.
(Kylie, 40s, 4 years since metastatic diagnosis, Interview 1)
There's only one income earner. It's a burden. Well, it's my burden. It's not his burden. He doesn't care. He just goes, ‘It doesn't matter’. But I worry about that … I don't like being a drain on the finances of the family.
(Interview 3)

As the quotes above illustrate, participants often felt the weight of guilt and responsibility for not being able to contribute financially (equally or as previously), even when their family members did not view it that way. Anticipating the financial futures that might accompany different illness trajectories and life expectancies was viewed as acting responsibly in relation to the needs of partners and children. Calculations of how to allocate finite resources across an uncertain timeframe thus contributed another dimension of uncertainty across the timescape of metastatic cancer.

4.5
The Tempo of Living Beyond Prognosis: When Time Contracts but Then Expands
Many participants talked about using information about average life expectancy as a reference point or benchmark to plan for their future. Exemplifying how prognosis informed decision‐making, particularly about how money was allocated, Rita commented:I went on sick leave and long service leave and used up all my leave until I could retire. And then during that period I then had the liver spots, which reduced my [prognosis], the oncologist said … At that stage I then took my life insurance as cash, and we did some big trips and took friends with us on trips and spent it all enjoying ourselves. So that was how we dealt with the diagnosis in the expectation that it was coming sooner rather than later. But that was five years ago.
(Rita, 50s, 5 years since metastatic diagnosis, Interview 1)

Here, we see how tempo is altered: It is first contracted at the point of diagnosis, resulting in an increased pace to maximise spending and spend time well (see Adam 2008). Later, time is protracted when life expectancy exceeds expected prognoses, and pace is reduced. Although living longer than expected is embraced, it is experienced with/as a miscalculation of funds. Similarly, Daisy recounted how—with the temporal uncertainty of metastatic breast cancer—an ongoing process of adjustment and readjustment was required: ‘I used up all my long service leave just as an income basically. Then that ran out’. (50s, 4 years since diagnosis).
However, for some participants, living longer than expected was a reprieve from the former vigilance required to feel that they had ‘everything planned’. As Carol explained, living longer had given her the opportunity to slow down and feel less under pressure and urgency to get things ‘done right now’:… at the beginning of this year I've sort of realised, ‘Well, hold on … I'm doing really well and I've got longer, I now can take that pressure off myself’. I don't necessarily have to get it done right now. I don't have to make sure that in two weeks' time that it's all done … to make it easier for the family. I don't have to do that because I now have, hopefully, more time. So that's taken a bit of stress off of me because I think I was always rushing to think that I had to have everything planned.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 2)

However, as Carol went on to say, and as described by many participants, living years beyond what was initially anticipated meant that over time financial concerns had progressively increased and could be accompanied by a sense of regret:So [my financial advisor] gave us extra money to use for two years, and if I had then died, my insurance would have kicked in and would have paid off those bits and pieces and my husband would be fine. But instead, we've accessed more of the house, which means we've got more of the mortgage to pay back, and I'm working less hours because I'm fatigued … [Going to the financial advisor] was the worst thing we ever did … I think he probably maybe thought I'd pass within two years and then the insurance would help my husband out. But because I've lived longer than that, he's left us worse off financially.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 1)

For Carol and her husband, planning for the worst meant accessing more money to enjoy her final 2 years, yet each day beyond prognosis, life became increasingly unaffordable. Having lived with metastatic cancer for 8 years, Carol had exhausted available finances and now found herself looking for part‐time work because ‘money is really tight’, yet she worried about whether to disclose cancer due to fears of being discriminated against and concerns that accommodations would not be made for her ongoing cancer treatment and care:… trying to find a job, hoping no one asks you about the fact that I still need to have scans. You're very aware of the fact that you're going to have to find a workplace that's going to be a little bit accommodating. I'm tireder than I was before. Two days a week is what I can do … you're not feeling well and you can't work the long enough hours.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 1)
I can't work full‐time and money is just really tight. So it's quite a drain. It's all been a strain on the relationship.
(Carol, 50s, 8 years since metastatic diagnosis, Interview 2)

The financial impacts of living beyond prognosis, although substantial for all participants, were not evenly felt in their effects. Unlike those participants who had access to additional resources (such as insurance, superannuation, leave entitlements, financial support from family members, or assets such as refinancing their mortgage or selling the family home), some participants, who were already experiencing financial difficulties, were now facing additional financial hardship, accompanied by complex decision‐making and barriers to support:I'm trying to get a disability pension. And I get that they've got to ask the questions, and they're all valid, but sometimes everything's a bit too formulaic and the world doesn't run like that … ‘We don't just apply for a disability pension for the heck of it. We are suffering issues. And yet, you're making it so hard’ … financially that's quite disturbing … I've got this much money and it has to do me until I die. How am I going to manage that? … I don't. I just drift from day to day. I have become a bit more of a hermit.
(Leah, 50s, 7 years since metastatic diagnosis, Interview 1)

5
Discussion and Conclusion
Drawing on the accounts of Australian women with incurable metastatic breast cancer, we provide valuable insights into how they navigate the complexities of time, financial resources, identity and relationships as they live beyond prognosis. Expanding on what is known about living beyond prognosis (see Dew et al. 2024), the longitudinal approach followed in this study, consisting of multiple interviews, made visible how the experience of living ‘over time’ is deeply relational, with economic resources shaping how time is lived and spent well. Although a diagnosis of metastatic cancer amplifies and illuminates time in a way not experienced when living through a normative timescape, the idea and/or reality of living beyond prognosis complicates time's linearity. People living beyond prognosis are caught in complex temporal entanglements involving renegotiations, reimaginations and reprioritisations of both contracted and protracted time.
For Adam (2008), a focus on timescapes permits us to ‘unravel the invisible future embedded in actions, traditions and chains of obligation and care’ (Adam 2008, 11; see also Holland 2011; Zin et al. 2023). Here, such an approach illuminates how living beyond prognosis challenges both the linear sequence and experience of the duration of life narratives and prognosis time, encapsulating time being taken away (contracted by prognosis) and given back (protracted by living beyond) and experiences of making time (through treatments and therapies) and living at a different tempo (out‐of‐sync timing with others). Decisions made based on the realisation they are living with contracted time now need to be renegotiated and reordered in relation to protracted time. This process involves a reimagination of both present and future time.
In their work on mothering with metastatic breast cancer, Bell and Ristovski‐Slijepcevic (2011) draw on Toombs (1990, 643) to describe living with metastatic breast cancer as ‘listening to a melody where she is attempting to anticipate a distant future note—not the one directly succeeding the present note but one much farther along. By concentrating on this distant note, the flow of consciousness—the unfolding of the melody—is disrupted’. We suggest that living beyond prognosis is better conceptualised as an accordion with the recursive temporal un/folding of simultaneous contracted/protracted futures, producing a melody that may be both welcomed and unwelcomed by women with metastatic cancer. We argue that the accordion metaphor is of utility for conceptualisations of the complexity and multidimensionality of timescapes because it illuminates how time is not experienced as linear or predictable; the accordion can be expanded and compressed at any moment, changing the volume and dynamics. Living beyond prognosis can be infused with a sense of appreciation, gratitude and joy that time cruelly stolen away by a diagnosis of advanced cancer is now gifted back. However, it can also bring with it a sense of frustration, suffering and guilt for how time with metastatic cancer has been lived to date and how one can go on living with the expectation of a protracted future.
Our findings demonstrate that to manage prolongevity, some women need to reverse decisions they made in the pursuit of quality contracted time. For instance, women who left work early to travel or spend quality time with family may now need to return to work despite the physical and emotional repercussions of doing so. Despite these efforts, women with metastatic cancer may be unable to reclaim or re‐establish a sense of financial security. For some, the decisions made in pursuit of quality time or buying more time may be irreversible, such as recouping superannuation that was accessed early, but lead to a lack of resources to live well beyond prognosis. For these reasons, extra time for women with metastatic cancer is not always relished or accompanied with a sense of freedom and joy but can be accompanied by hardship, regret and distress as these women try to extend, reclaim or restrict their use of resources to improve the quality and meaningfulness of living over time. In managing the uncertainty that comes with living beyond prognosis, women seek to constantly reorient themselves (both emotionally and financially) in relation to their past, present and future roles, identities and relationships (Broom et al. 2020).
Finally, our findings draw attention to the moral and ethical dilemmas infusing these experiences. Pressures to live well, plan well, die well and be remembered well are accompanied by expectations to act responsibly, complicating women's experiences of how to be in the present and future. Moreover, women with metastatic cancer can feel temporally estranged from others but also from their own temporal imaginations. These misalignments generate questions for women with metastatic cancer regarding what constitutes responsible allocation of one's time and money in both the present and future. As our findings illustrate, these questions are further complicated by family obligations, the desires for more quality time with loved ones and deeply held values about what matters most, such as doing enjoyable things with family and ensuring children and grandchildren have ‘normal years’. Further, complicating this experience is that the pursuit of life‐affirming and meaningful experiences constructed in contemporary cancer discourses tends to be promoted as though they are there for the taking by any individual motivated enough to be ‘daring to live fully’ (e.g., bucket list tropes) (Williams Veazey et al. 2025). Such discourse actively obscures the great cost for people with metastatic cancer in pursuing such experiences. Our findings demonstrate the pursuit of quality life and longer life can render individuals financially and emotionally precarious. This precarity is most acutely felt by those with fewer economic resources. Further attention is thus needed to understand what is needed to support people who are ‘outliving’ their prognosis, both in Australia and internationally, particularly those with fewer resources whose quality of life may be at greater risk.
These findings have important implications for the equitable provision of care and support to people living with metastatic cancers, especially in informing the design of personalised survivorship care for those living beyond prognosis. Recent metastatic survivorship care guidelines from the Multinational Association of Supportive Care in Cancer and American Society of Clinical Oncology (MASCC‐ASCO) have drawn attention to the importance of addressing financial costs associated with metastatic cancer. They recommend integrating financial navigation services and professional development for clinicians in how to support the evolving financial needs of their patients (Jefford et al. 2025). Embedding these strategies into metastatic survivorship care frameworks could help mitigate the emotional and material precarity that often accompanies extended survival, particularly for those with fewer economic resources, especially when such support recognises the interpersonal dimensions of financial decision‐making. In doing so, care can be better aligned with the timescapes of metastatic cancer, which are shaped not only by prognosis but by the moral, emotional, relational and financial negotiations of daily living with incurable cancer.

Author Contributions

Sophie Lewis: conceptualization (lead), data curation (lead), formal analysis (supporting), funding acquisition (lead), writing – original draft (equal), writing – review and editing (equal). Marika Franklin: formal analysis (lead), writing – original draft (equal), Giselle Newton: formal analysis (supporting), writing – original draft (supporting), writing – review and editing (equal). Katherine Kenny: formal analysis (supporting), writing – original draft (supporting), writing – review and editing (supporting). Frances Boyle: investigation (supporting), formal analysis (supporting), writing – review and editing (supporting). Andrea Smith: investigation (supporting), formal analysis (supporting), writing – review and editing (supporting).

Funding
This work was supported by Australian Research Council (Grant DE170100440).

Ethics Statement
Ethics approval was granted from the University of New South Wales Human Research Ethics Committee (HC17282).

Consent
All participants provided informed written and/or verbal consent prior to participating in this study.

Conflicts of Interest
The authors declare no conflicts of interest.