Abstract
Owing in large part to the rise of precision medicine, cancers that were once considered ‘terminal’ now often entail long-term treatability alongside ongoing incurability. The resulting chronic malignancy is fundamentally reconfiguring the meaning and experience of living with cancer and – we argue – illustrates some of the key features of precarious living, more generally. Drawing on 132 in-depth interviews and building from Lauren Berlant’s idea of the ‘impasse’, this article explores the affective and temporal dimensions of precarious living through the case of chronic malignancy. The advent of precision medicine appears to open up new opportunities for stalling and suspending the progression of disease, but in doing so suspends and variously stalls people’s experiences of living, too. The precariousness of living with incurable cancer in the age of precision medicine thus requires navigating unfolding temporal and affective landscapes, where traditional narrative structures dissolve into the impasse of ongoing chronicity.
Introduction
Chronic ill-health is a pervasive feature of contemporary living across wealthy industrialised countries, and increasingly low- and middle-income countries (Manderson and Wahlberg, 2020; World Health Organization, 2005, 2024). While changing population patterns, improved living standards and extended life expectancy have contributed to the proliferation of chronic conditions, so too have biomedical developments and therapeutic advances, which make diseases that were once acute and/or fatal treatable if not necessarily curable (Genre and Panese, 2022; Greco and Graber, 2022). Biomedical innovations – especially those developed under the mantle of ‘precision medicine’ – have simultaneously heralded new treatment possibilities while also bringing with them new forms of precariousness (Broom et al., 2022; Kenny et al., 2023; Kerr et al., 2021; Kirby et al., 2022; Williams Veazey et al., 2025), positioning the resulting increasingly chronic conditions, such as cancer, as an important site of contemporary precarious living. Much like the political and economic insecurity born of precarious work arrangements (Wood and Lehdonvirta, 2022), migration regimes (Stewart and Sanders, 2023) and entrenched forms of marginalisation (e.g. Ehlers, 2023; Kenny et al., 2025), the embodied insecurity produced by these conditions provides rich illustration of the temporal and affective dimension of precarious living that scholars like US cultural theorist Lauren Berlant have identified as a key feature of our contemporary historical moment (Berlant, 2011; see also Butler, 2004; Papadopoulos, 2017). Following Berlant (2011: 2) in taking the present, first and foremost, as an affectively felt temporal genre, we mobilise the concept of the ‘impasse’ as a stretch of time that lacks narrative structure, lacks direction yet nevertheless demands action (more below). Our analysis of the temporal and affective dimensions of living with newly chronic disease thus contributes not only to the sociology of health and illness, but to sociological understandings of the temporal and affective complexities of precarious living in the face of uncertain futures, more generally.
Cancer is a key example of an increasingly chronic condition (Broom et al., 2022; Kenny et al., 2023). Since the mid-20th century, advancements in surgical techniques and cytotoxic treatments (chemo- and radio-therapy) have transformed cancer from an illness that resulted quite quickly in either treatment, remission and cure, or treatment-failure, disease progression and death, into an increasingly protracted experience (Pizzoli et al., 2019). More recently, the development of ‘targeted’ drugs and immunotherapies has forged new trajectories of ongoing treatment resulting in disease stabilisation and stalled progression, albeit without ‘cure’ and at often prohibitive cost. 1 In some cases, the results have been dramatic – certain targeted drugs have doubled the five-year survival rate of metastatic breast cancers, while others targeting certain types of lung cancer have increased survival time by almost tenfold (Hofmarcher et al., 2023).
But this emerging experience of ‘treatability’ alongside enduring incurability – suspended somewhere between terminality and cure – has also given rise to a variety of new forms of precarity, including: inherent uncertainties that accompany the roll-out of novel therapies; questions about equity and sustainability in access to new therapeutics given the accompanying costs; surprising and sometimes debilitating symptoms and side effects; and difficult renegotiations of (ongoing) care. The precision turn in cancer care has thus opened up extended timeframes of survival through the emergence of chronic malignancy. But in doing so, it has also positioned living with cancer that is neither terminal nor curable as a new site of precarious living that people living with cancer and those who care for them are grappling with in an ongoing way (Broom et al., 2022; Kenny et al., 2023; Kerr et al., 2021; Kirby et al., 2022; Shilling et al., 2017).
For patients living with chronic malignancy and those living alongside them, new clinical trajectories and temporal horizons of treatability can jar with cultural expectations of cancer, giving rise to questions about what kind of life might be lived and for how long, and what care will be required and whether it will be received. How people experience chronic malignancy exists in tension with dominant clinical and cultural narratives of remission and cure or, alternatively, progression and death (Broom et al., 2022; Kenny et al., 2023). Instead, patients and carers inhabit a precarious space between these binaries, suspended in an ‘enduring present’ akin to what Berlant (2011: 196) has theorised as an ‘impasse’, where the ‘problem of living in the ongoing now’ requires ‘finding one’s footing in new manners of being’. Drawing on 132 in-depth interviews carried out over two waves with 54 people receiving precision therapies and 28 of their informal carers, we explore emerging experiences of chronic malignancy at the frontiers of precision medicine as a rich illustration of some of the affective and temporal dimensions of precarious living. The experiential and existential tensions of chronic living – which may not be unique to living with cancer but rather shared across various conditions of precarity from insecure work, housing or migration status to economic and climate crises – lead to various forms of reckoning in the day-to-day of living in the ‘enduring present’ and in relation to the unfolding of the (precarious) future.
Precarious living in the shadows of terminality
The advent of precision medicine has fundamentally reconfigured the horizons of terminality, treatability and ‘cure’ in cancer care. Precision therapies, which focus on identifying cancer biomarkers towards which targeted drugs and immunotherapies may be directed, have moved the field of oncology and experience of cancer survivorship in new and promising directions. The costs are significant: treatment can cost upwards of US$100,000 per year (Prasad et al., 2017), with vast differences in access across context, countries and populations, further exacerbating existing inequalities in cancer survival rates (Allemani et al., 2018). Nevertheless, in contexts where precision therapies are accessible, the time spent living with cancer is increasing. But, as we seek to explore through participant responses below, increased survival time has also destabilised familiar expectations of what living with cancer means. Thus, life with chronic malignancy entails not only reconfigured survival rates, but also reconfigured meanings and experiences.
Central to the emerging experience of chronic malignancy is its ambiguous relationship to both terminality and temporality. The prospect of potential chronicity displaces both hopes for a cancer-free future (cure) and fears of (imminent) terminal demise. At the cutting edge of therapeutic innovation, questions of how to live day-to-day can no longer be guided by previous knowledge and expectations about what lies ahead. Living is rendered precarious – with conventional narrative forms and temporal horizons made newly uncertain. It is in this sense that chronic malignancy resonates with other forms of precarious living – in relation to climate (Savransky, 2022; Verlie and Flynn, 2022), housing (Adkins et al., 2023) and employment precarity (Woodman, 2012), for example – insofar as what kind of future can be imagined, and what to do in the present so as to get there, is rendered opaque.
Life with chronic malignancy is shaped not only by horror at the death that could have been and relief at its avoidance, but also by the continued desire for a future of cure that may never be achieved. It is in this space – between the promise of survival and the spectre of death – that the current study is situated. Such is the paradox of living with chronic cancer: a mode of survivorship that involves a shift from the predominantly acute and imminently life-threatening, to the chronic, protracted, latent mortality of incurable disease. In this sense, chronic malignancy involves living with and dying with cancer, with all the temporal and affective complexity that results. As the precision turn in cancer treatment has offered new therapeutic pathways, incurability and other impasses remain.
The impasse of chronic malignancy
The paradox of living and dying that emerges through chronic malignancy, and the reconfigured experience of time articulated in the lived experience as explored below, invokes what cultural theorist Lauren Berlant has described as the impasse. Crucially, Berlant’s (2011) use of the term departs from its everyday meaning of deadlock, roadblock or point at which no further progress is possible. Instead, weaving together threads from political economy and cultural studies of temporality, in her book Cruel Optimism Berlant (2011: 199) sees the intricacies of the impasse as the time/place/embodiment of precarity – it is a time lived without narrative structure, a time of directionless and yet a time that demands activity: I offer impasse both as a formal term for encountering the duration of the present, and a specific term for tracking the circulation of precariousness through diverse locales and bodies [. . .] The impasse is a space of time lived without a narrative genre [. . .] An impasse is a holding station that doesn’t hold securely but opens out into anxiety, that dogpaddling around a space whose contours remain obscure. An impasse is decompositional – in the unbound temporality of the stretch of time, it marks a delay that demands activity. The activity can produce impacts and events, but one does not know where they are leading. That delay enables us to develop gestures of composure, of mannerly transaction, of being-with in the world as well as of rejection, refusal, detachment, psychosis, and all kinds of radical negation.
The idea of the impasse as a holding pattern within a space of time without narrative genre illuminates many of the features of the precarious living created by the rise of chronic malignancy. Whereas other analyses of the dynamics of living with cancer have alluded to the ‘paralysis of uncertainty’ in illness (see Kerr et al., 2018), or the suspended temporality of ‘living in prognosis’ (e.g. Jain, 2007) or ‘terminal anticipation’ (Kenny et al., 2017), chronic malignancy denotes paralysis as accompanied by what we might call a requisite gratitude of reprieve, and imperative to ‘make the most’ of life now-not-foreclosed. That is, in its deferral of mortality, the impasse of chronicity is a form of paralysis, and simultaneously, a gift that demands action. As we see in our participant accounts below, without the biomedical advances afforded by precision therapeutics many would already be dead. Yet few, if any, will survive without/beyond their present therapeutic entanglements. So, what transpires in this holding pattern of deferred mortality? Or, in Berlant’s (2011: 199) words, what happens when one is ‘dogpaddling around a space whose contours remain obscure’? The impasse of chronic malignancy raises many questions relevant not only to living with cancer but to precarious living writ large. How do people make sense of compromised well-being in an ongoing way, the new forms of affliction chronic malignancy can entail and the new possibilities it affords? How is deferred mortality experienced, and/or resisted, and with what day-to-day consequences? Attempting to answer such questions requires us to recentre our sociological gaze on the tensions of everyday living in precarious times, in this case in relation to cancer made increasingly chronic by the ‘advances’ of precision medicine.
Methods
This article takes a qualitative inductive approach (e.g. Charmaz, 2017) to 132 in-depth semi-structured interviews with 54 people living with cancer and 28 nominated ‘carers’ or significant others carried out over two successive waves in Australia from March 2020 to August 2021 (see also Williams Veazey et al., 2025). The interviews were carried out as part of a programme of qualitative research focused on contemporary experiences of cancer care in the era of precision oncology, a collaboration between qualitative social scientists and clinician-researchers across three institutional contexts, with the support of five cancer-related consumer groups.
After gaining ethics approval through a metropolitan hospital on Australia’s east coast, potential participants who had sought out, tested for and/or experienced targeted treatments and/or immunotherapies over the course of their cancer care were approached by a clinician, researcher and/or consumer group organiser to explain the study. If they expressed interest, participants were then contacted via phone to initiate the informed written consent process and to schedule an interview via video call. Forty-four women and 10 men living with cancer, aged between 30 and 79, participated in interviews. This sample included people living with lung (30), neuroendocrine (14), breast (5), ovarian (2) and brain (1) cancer, and melanoma (1) and rare (1) tumours. These participants were asked to nominate a person who had supported them during their cancer experience (e.g. family member or friend). Informed written consent was obtained from 28 caregiver-participants (12 women and 16 men, aged between 18 and 80), who were then also interviewed via video call. Caregivers included spouses (15), adult children (6), parents (2), other relatives (1), friends (3) and one professional support worker (nurse). Follow-up interviews were conducted with 41 of the people living with cancer and nine of the caregivers, approximately six months after their first interview.
Approximately 60% of participants worked in (or had previously worked in) managerial or professional roles (categorised according to the Australian and New Zealand Standard Classification of Occupations (ANZSCO)). Approximately 20% (had) held technical, trade, service or clerical roles (ANZSCO groups 3–5), and 10% worked in sales, as machinery operators or drivers, or as labourers (ANZSCO groups 6–8). The remaining eight participants (10%) were students or retired (with no information about previous employment). The vast majority of participants identified themselves only as ‘Australian’. Eleven participants identified themselves as Australian with an additional cultural background including Aboriginal, British/European, South-East Asian and New Zealand. Four mentioned only their migrant identity. The findings presented below should be read in light of this middle- to upper-class and largely Anglo-Australian positioning.
In-depth semi-structured interviews of between 22 and 127 minutes were conducted with patients and, separately, their carer (if nominated) via videocall. Interviews were audio recorded and later transcribed in full. Results are reported here using researcher-assigned pseudonyms to protect participants’ anonymity.
Analysis
We embarked on our analysis as each interview was transcribed, mapping experiences of precision cancer care with close attention to issues of complexity, situatedness, difference, contingency and reflexivity (Clarke, 2003). An initial thematic analysis was conducted independently by authors A, B and C, who coded the data, wrote notes and subsequently discussed potential themes together as a research team. Within this process, we continually sought to retain the richness of the respondents’ experiences, documenting atypical cases, conflicts and contradictions and potential ‘sites of silence’ within the data. This approach was developmental in that analyses developed in relation to early interviews were challenged, contrasted and evolved as data collection continued. Finally, we revisited the literature and sought additional conceptual tools to make sense of patterns we identified from the data (Ezzy, 2002).
Results
Across the interviews, tensions between cultural expectations about living with cancer and newer experiences of precision cancer therapy revealed a lack of narrative structure for living with or alongside chronic malignancy. For some participants, making sense of their experiences of cancer involved constructing alignments with other chronic diseases. Other participants remained more wedded to traditional cancer narratives. Others still stood astride both perspectives and could poignantly articulate the various tensions and complexities emerging within this new terrain. All, however, faced similar challenges in navigating the temporal landscapes of chronic malignancy as well as relationally managing a wide range of precarious hopes, expectations and frustrations.
Dogpaddling: Chronic malignancy as a space of obscure contours
The day-to-day experience of living with chronic malignancy and undergoing precision therapy departs in many ways from the traditional routines and requirement demanded by surgery, chemotherapy and radiotherapy. As a result, many participants were left feeling as thought they were navigating uncertain terrain or, as Berlant (2011: 199) describes it vis-a-vis the impasse, ‘dogpaddling around a space whose contours remain obscure’. For example, many precision therapies can now be taken at home, enabling the integration of cancer treatment into participants’ quotidian routines and domestic spaces. But, like many of the ‘at home’ regimes of working and living that have emerged in the wake of COVID-19, familiarity was often accompanied by new forms of strangeness, requiring the active construction of a ‘new normal’: I take it [precision drug] once a day, every day, at a certain time. [. . .] It means that I just acknowledge in the morning, I acknowledge that I have this health condition, I’m being looked after, and then for the rest of the day I just get on with [it] [. . .] It’s not as if things just completely go back to normal, [. . .] but it’s a new normal. (Esther, lung cancer; F72) I kind of try to think of my cancer, at the moment, as being a chronic illness [. . .] similar to something like diabetes. Someone with diabetes would have side effects from their medication and a reduced quality of life, but it’s just the new normal. So, to me, although I do have these side effects, they’re quite manageable. (Anika, lung cancer; F50)
For these participants, the ‘new normal’ often involved long-term medication and mostly ‘manageable’ side effects. For some, this provided a quality of life that was presumed gone: ‘I went back to exercising and running and just being able to look after my son again. The quality of life that I thought was no longer there anymore, I actually got that with [precision drug]’ (Sarah, lung cancer, F35). But for others, chronic malignancy’s comparison to other chronic conditions rang hollow: A lot of people say it’s like just a chronic disease that can be managed. But I think it’s a bit more than that. [. . .] It’s always there. When I go to bed, when I wake up, in my dreams, yeah, it’s always there. That’s why I’m on low-dose [antidepressant] for depression and [sedative], at times, for anxiety, and other stuff too. That’s how I deal with it [. . .] Kind of like preparing for the worst all the time. (John, neuroendocrine cancer; M50)
Living in this ill-defined space between ‘not sick’ and also ‘not cured’ could give rise to depression and anxiety, as is the case above. For others, including both those living with cancer and those caring for them, it produced a sense of disorientation with the seriousness of ‘cancer’ clashing with the stasis of ongoing treatment. As one carer explained: [She]’s here with us at home, she still does everything that she used to do. It’s not like she’s somebody who’s lying in bed in pain or wakes up in the middle of the night screaming. [. . .] She’s got a horrendously serious condition, but nothing changes. From outside appearances, nothing changes. So, it’s just this ongoing thing that’s got to be controlled. She’s got something in there that’s got to be controlled. It’s not hurting her. It’s not causing her to lose sleep. (Harvey, husband of woman with lung cancer; M68)
Here, cancer’s progress is stalled or ‘controlled’ by precision therapies, simultaneously suspending traditional cancer narratives about anticipated pain and suffering. But the result is a paradox – a seeming continuation of the status quo in the face of a ‘horrendously serious condition’. Navigating the ‘obscure contours’ (Berlant, 2011: 199) of the impasse of chronic malignancy thus challenges the deeply ingrained narratives of progress, respite and cure, which might otherwise help define and ‘map out’ the experience of cancer as it extends into the future, however uncertain its duration.
New manners of being: Finding one’s footing amid chronic malignancy
Despite upbeat rhetoric about a ‘new normal’ of living with chronic malignancy, the shift away from the possibility of cure did require new modes of living with cancer. Instead of the traditional emphasis on eradication and cure, precision therapies offer a new set of mechanisms of action, and alongside them, a new set of metaphors intimating new ways of being. Militaristic metaphors have long accompanied the ‘slash/burn/poison’ approach of traditional surgeries and cytotoxic therapies, with eradication of disease the ultimate triumph (Sontag, 1978; see also Bodd et al., 2023; Malm, 2016). In contrast, the targeted therapies of precision medicine achieve, at best, a detente between the cancer within and attempts to contain it, but without the clear ‘victory’ that is often desired. Living with chronic malignancy thus required ‘finding one’s footing in new manners of being’ (Berlant, 2011: 196). As one participant explained:
Well, it [the targeted therapy] wasn’t going to cure the tumour. There was never an expectation that it would get rid of the tumour or the nodes. It was just a slowing down the process and a shrinkage of the tumour.
And what did you think when you heard that?
Well, I thought, ‘Well, I’m going to have to learn to live with it, aren’t I?’ (lung cancer; F79)
In spite of attempts to ‘learn to live with it’, many participants remained troubled by the perpetual presence of cancer in their body and, with it, the fear of future progression. Navigating what one participant (below) calls the ‘uncharted territory’ at the edge of medical innovation created various forms of discomfort. The sense that cancer is ‘always there’, ‘inside you, just waiting’, demanding constant work to control, and always threatening to move or grow in ways that escape medical containment created a differently embodied experience to living with cancer and undergoing traditional therapies: Because you know it’s there, inside you, just waiting to – At least if you’ve had surgery, you might be able to think, ‘Well, it may not come back.’ But it’s much harder when it’s already there and it’s going to stay there [. . .] it’s really hard to explain that, but it’s harder. It’s much harder. I mean, if I’d had a brain tumour and they’d taken it out and they were like, ‘Right, you’re clear for now. We just have to wait and see if it comes back’, that would be so much easier than saying, ‘You’ve got two brain tumours. They’re in there, they’re just not moving at the moment.’ (Peta, lung cancer; F56)
In the excerpt below, John articulates the embodied precarity of living with cancer beyond treatment, in what might seem like surrender or defeat, in spite of new understandings of how targeted therapies arrest cancer progression. The expectation that treatment should continue until it either fails (there is progression) or succeeds (removes tumours) is thwarted by the new modus operandi of targeted therapy, in which malignancy is ‘switched off’ at the genetic level. Metaphors of dormant, inactive tumours stand in stark contrast to culturally engrained cancer metaphors of fights, battles and victories/defeats – and more general neoliberal imperatives towards constant anticipation and activity (Adams et al., 2009) – with the result that the new manners of being required to live alongside the ongoing presence of (now dormant) malignancy could feel ‘weird’: I keep saying to my oncologist, ‘But I’m not on any treatment. Everyone’s on the injections, everyone’s on something.’ He goes, ‘But you don’t need the treatment. You’ve had the best treatment. You’ve had the treatment.’ And so I’m just dealing with that at the moment. Because it just feels weird that I’ve got cancer. . . And I said, ‘I feel like I’m missing out.’ [. . .] So, that was our discussion a week or two ago. But again, no shrinkage, but all the tumours are dormant, nothing’s lighting up. So they’re just asleep, which is great. (John, neuroendocrine cancer; M50)
Both patients and their carers struggled to reconcile their understandings of novel therapeutics with the enduring narrative genres inspired by conventional cancer treatment: I still don’t quite understand how it [precision drug] worked. But the best that I get is that it basically hinders it, it prevents it growing and sort of starves it [. . .] it doesn’t actually cause them [tumours] to disappear. . . Because visually, it’s still there in the brain and stuff, there’s still the holes, they don’t disappear. So then I think the question is always, ‘Oh, is it actually gone? Is it actually dead?’ . . . ‘Or is it just lying in wait?’ (Matthew, husband of woman with lung cancer; M32)
The fear of cancer ‘lying in wait’ was not only an existential concern. For both patients and carers, cancer was also embodied in visceral ways, with the constant suspicion that it could be the cause of any number of ‘little things’ that might once have been considered normal: that plays on my mind a little bit, to be honest, because . . . I know it’s dormant, that’s what it is. It’s sleeping. It’s not active. [. . .] And I still deal with it, that’s my reality, it’s my everyday life of living with stage four lung cancer. [. . .] I constantly have to check, ‘Can I breathe properly? Can I breathe deeply? Can I do these exercises every day where I’m checking my body in terms of physically? Can I feel anything? Can I sense anything? Is there a tightness in my chest? Do I have a cough?’ I’ll never get away from that point where I don’t go, ‘Oh, I’ve got a cough, does that mean something?’ or, ‘I have a really bad headache, does that mean something?’ All these little things that you think are everyday normal thing, it’s not normal any more. (Sarah, lung cancer; F35)
For many participants, this sense of embodied precarity endured, even when treating physicians tried to provide reassurance about their progress. This led to various confusions about whether ‘enough’ was being done, and whether there is an endpoint or conclusion to their precision cancer journey. As one women in her late 50s and living with ovarian cancer told us: Yeah. I’m not actually sick. I’m just a person on long-term treatment, but that’s another thing. So, I printed this out of an email he [oncologist] sent me. I just put it up. ‘We have seen very few late relapses beyond five years, so in uncharted territory.’ [. . .] ‘Maybe you’re actually cured. We don’t know.’ But I don’t think you can say you’re cured if you’re still taking your treatment, but maybe the whole cancer mechanism’s been turned off. (Janelle, ovarian cancer; F58)
The novelty of targeted therapies, and the ‘uncharted territory’ that they create enabled participants to live longer but also demanded new ways of living with the embodied precarity of chronic malignancy.
Unbound temporality: Time lived without narrative structure
The ill-defined, uncharted territory of chronic malignancy was accompanied by a similarly unbound temporality, characteristic of the ‘impasse’ (Berlant, 2011: 199), that left participants grasping for a more secure hold on their future. Even within conventional cancer treatment regimes, prognosis is a notoriously inexact practice, and the evolving innovations in precision therapies only exacerbate the uncertainties of prediction. Not only do patients and their loved ones have to adjust to the novel mechanisms of precision treatment modalities, they also have to live with the radical temporal uncertainties born of (as yet) limited evidence about possible timeframes of survival. In this context, there are few narrative structures on which to base shared understandings of how life (and at some point, death) is likely to unfold and across what temporal horizon. As one carer shared with us: I thought she was going to die within six months. But when we got to the [targeted drug] and the explanation of that, that [she] could live a well and healthy life for 15, 20 years, well, it started to put things into a bit better perspective for me. [. . .] After the oncologist explained everything properly and we understood that it was an injection once a month and this could go on forever, well, you felt much more comfortable about things. (Liam, husband of woman with neuroendocrine cancer; M62)
In the excerpt above, the notion that treatment could ‘go on forever’ provides a sense of comfort to the carer, opening a potentially limitless shared future that the initial diagnosis had seemed to foreclose. However, alongside the reprieve and relief that such extended timeframes could bring were instances of the need for increased responsibility and requisite forward-planning that might not have been required on conventional treatment regimes: I’d be imprudent now to do something financially which means I wouldn’t be able to pay for aged care, for example. Whereas that wouldn’t have been on my mind [before precision treatment] because there was no prospect of aged care at that point. (Janelle, ovarian cancer; F58)
The subsequent expansion of a contracted prognosis did not mark a return to how time, and life, was experienced before cancer. Rather, becoming chronic involved a newly precarious relation to time in the sense that participants were painfully aware of the provisionality and precarity of their continued existence. There was always the possibility that treatment could stop working at any time, and their cancer could ‘reawaken’. The death sentence of a cancer diagnosis or the life sentence of ongoing treatment has, in this sense, been commuted to a suspended sentence of uncertain duration.
While the possibility of future recurrence has always haunted the oncological scene, the precision environment has created an even more uncertain realm. The result could be persistent anxiety, impatience, even dread – about drugs ceasing to work, or running out of options, and of future therapeutic innovations not arriving in time – or, conversely, a tentative optimism, gratefulness and positivity: My biggest fear is if the targeted therapy that she’s currently on doesn’t keep working, then we’re in trouble. But, as they say, they [therapies] are developing all the time. [. . .] There is a sense that it’s [targeted therapy] the last bastion. [. . .] If that stops working, we have to hope the next one comes along, or we have to hope we can get involved with trials. (Michael, husband of woman with lung cancer; M58) When I was first diagnosed I just had it in my head that there would be a cure within 10 years. And I thought, ‘If I can just get through 10 years, everything’s going to be okay.’ And I honestly thought that we would have something by now. (Penny, breast cancer; Female aged 50) The fact that I went from thinking that I had up to two years to live, to then be told that actually the median progression for this drug could be 36 months, and then more, depending on how well your body takes it. Obviously, the cancer does mutate and change and there’s the possibility, the 50% it doesn’t work. But the fact that I have tolerated it so well, I feel so much more grateful and positive. I feel like I can plan for more than next year. I know I don’t guarantee anything, but to be told two years and then to be told that you could have more than that, there’s a possibility that there’s life beyond those times. (Sarah, lung cancer; F35)
Despite their differing affective orientations, these participants’ experiences both illustrate a fundamental temporal tension at work in chronic malignancy. The day-to-day of living with cancer demands all manner of action in the present in spite of an uncertain future with obscure contours, which is reminiscent of living with late-modern crises more generally (Adkins et al., 2023; Savransky, 2022; Woodman, 2012). The chronic present is underpinned by a sense of ‘future-time’ (Brown and de Graaf, 2013), which may or may not be extended by (promissory) therapeutic interventions. The unravelling of lived biographical time is imagined to occur alongside (and in some senses, in competition with) the pace of technological innovation (Ackerman, 2021). Current therapeutics are envisaged as means of maintaining the impasse until the ‘technoscientific potential’ (Ackerman, 2021) of precision medicine (or even a cure) can be realised, defining a pathway forwards, regardless of how far into the future the realisation of this potential might come.
Embodying the impasse: Rejection, refusal and negation
The narrative, embodied and temporal precariousness brought about by the impasse of chronic malignancy catalysed various new manners of being. But it also entailed a range of relational tensions, including ‘rejection, refusal, detachment, psychosis, and all kinds of radical negation’ (Berlant, 2011: 199). Cancer’s ongoing presence in the bodies of participants created a fracturing of perspectives with those around them who did not share the same embodied experience, nor necessarily the same temporal/affective orientation towards the (precarious) future. For example, in the following excerpt, Chloe, who was living with lung cancer, explains that while a reduction in the size of her tumour was cause for celebration for those around her, she felt ‘no joy’ because ‘it’s still there’: Everyone in the room was cheering [. . .] everyone was quite joyful and I was just there going, ‘There is no joy.’ I was starting to get depressed at this point. It’s like, ‘There is no joy in what I’m going through.’ And a reduction in size is a reduction in size, but it’s still there, you know? It was a win, but not a win. A negative win. (Chloe, lung cancer; F49)
In rejecting or negating the joy expressed by others, Chloe asserts the significance of her ongoing, embodied, malignancy. While those around her proclaimed joy in response to perceived progress in tackling the cancer, Chloe remained suspended in the impasse of chronicity. This sense of stasis, in contrast to others’ forward momentum, is echoed in Shauna’s account living with lung cancer, which foreclosed her reproductive plans while the people around her moved towards their reproductive futures: Yes, because life goes on, people around also move on as well. People finding, buying new houses, people moving overseas to work, delivering first kid, second kid, and that sort of thing, and all of that has a big impact. Because the cancer hit right at the point where we were talking about babies and that sort of thing and I couldn’t do it. I couldn’t freeze the egg either, and so, yes, we just can’t have a kid. (Shauna, lung cancer; F37)
For this participant, the impasse of chronicity reflects a quite literal interruption of the embodied ‘norms of the reproduction of life’, as Berlant (2011: 199) puts it – a sense of detachment from the life that could have been. In the absence of established narratives to deal with the affective conditions of this impasse, or as Berlant (2011: 199) frames it, this paradoxical movement in the same place, people living with chronic malignancy often felt left behind.
Navigating different people’s expectations around precision treatment demanded significant relational work on all sides, with patients and families learning to live differently alongside each other. Participants observed that such conversations could be fraught, for example when family members clung to a narrative of cure/success that clashed with the patient’s understanding of their own situation: When I told my family, everybody was just so excited, but I hated to break the news that it’s not really, ‘that’s it’. It’s just because the doctors are always telling me, ‘Don’t forget that this is just part way of the journey and you will develop resistance eventually.’ It’s just that, at the moment, this is how it is. (Karen, lung cancer; F55)
Precision cancer treatments and the chronicity they create demand new social etiquettes to enable people to navigate situations of celebration/commiseration, to talk about fluctuating capacities for work, travel or social interaction, and to ask for necessary support. Not conforming to conventional expectations about cancer (e.g. not displaying visible signs of cancer or cancer treatment) could make it difficult for people to be extended the understanding or support they needed: [Others] see a lady that looks reasonably well. On the outside she looks reasonably well, and she’s sweet and nice and pleasant. [. . .] But I think they see that and don’t understand it. She’s really actually crying out for help sometimes. (Anne, friend of woman with neuroendocrine cancer; F66) He feels shitty about feeling so well because he feels like he’s a fraud. Every time he sees people, they say, ‘Oh, you’re looking so great. You’re looking so great’, and he feels like, ‘I’m dying here. This is not good. . .’ [later] I can understand the frustration because, as I was saying before, it’s that feeling of he’s still dying. It’s still happening, it’s just slower. And that day in particular, he wasn’t feeling appreciative of having more time. He was feeling pretty shitty. (Courtney, daughter of man with lung cancer; F50)
Beyond family and friends, participants described coming up against administrative and bureaucratic processes that did not align with the embodied and temporal experiences of chronic cancer. In relation to employment, for example, while some people were able to take leave from work, reduce working hours or work from home in ways that fit with their treatment and symptoms, others found that workplace processes (and the colleagues who implemented them) were unable to comprehend the new ways of being that living with chronic cancer entailed. For example, one woman returning to work after treatment for metastatic lung cancer, described how her colleagues appeared unable to reconcile the persistence of her brain tumours with her capacity to continue in her role: I kept getting certificates from my doctor and [. . .] they said, ‘Well, it’s just that they’re very ambiguous, the certificates.’ And I said, ‘Well, what is it you want?’ And they said, ‘Well, we can’t tell you because it’s got to come from you.’ And I said, ‘Well, how can it come from me when I don’t know what you want?’ And they just kept at it and at it. And I produced two different certificates within two weeks and they rejected both of them. [. . .] Basically, they [the certificates] said, ‘[She] has no limitations to work, but there may be the odd time that she may find work more challenging than others’, which makes perfect sense. (Peta, lung cancer; F56)
For Peta, the ambiguity of her condition could not be tolerated, even when confirmed by medical certification, leading to feelings of anger and frustration. For others, this ambiguity led to situations experienced as embarrassing, as their lives continued alongside cancer, against the prevailing expectations of imminent death: I did a big, long trip . . . [t]hat was actually paid for partially by a charity called Dreams to Live For, which shouts your dream if you’ve got metastatic cancer. I’m slightly embarrassed now, because I didn’t die of my metastatic cancer. So, I probably got the money, probably I ripped them off by not dying. (Janelle, ovarian cancer; F58)
Here, chronic malignancy is incompatible with both social structures and dominant cultural narratives that are built around expectations of movement towards the binary outcome of life/death. Without a shared understanding of how the experience of chronic malignancy might unfold, social interactions become fraught with confusion, misunderstanding, disappointment, anger or embarrassment. Thus, in addition to the narrative, affective, and embodied uncertainties that participants experienced, relational fractures contributed another dimension to the precarity of living with cancer long term.
Conclusion
The successes of precision oncology have been widely celebrated and even portrayed as ‘the beginning of the end of cancer’ (Forkona et al., 2016). But such promissory narratives have been shown to elide the complexity of the precision turn in their implications for everyday survivorship and precarity. Living with chronic cancer and undergoing targeted and immune therapies diverges in important ways from the experiences of living with and beyond treatment with traditional therapies signalling a departure from conventional cancer narratives, but without their clear replacement. While precision therapies have secured significant survival gains in some cases, the new forms of precarious living that they entail are not necessarily easier nor less complicated. In some instances, as illustrated here, the affordance of more time – and more life to be lived within it – creates an impasse, giving rise to new and different complexities.
Across the interviews, participants expressed feelings of discomfort and alienation regarding the jarring of outmoded cultural narratives, pervasive if uncertain embodied symptoms, shifting temporal landscapes and relational tensions. In the absence of clearly defined cartographies, participants’ attempts to orientate themselves in the oncological landscape of precision medicine amounted to ‘dogpaddling’ (Berlant, 2011: 199) around the ill-defined space of the impasse of chronic malignancy. Shaped by considerable uncertainty and ongoing precarity, the ‘new normal’ of life on targeted therapies demanded various forms of activity – new ways of being – but did not afford a clear sense of forward progression in any particular direction. Dogpaddling around this uncharted territory, participants navigated the unbound time of chronicity and new dynamics of precarity in relation not only to their bodies and time, but in relation to others, and social institutions as well.
Such shifts in meaning and experience sit in stark contrast to traditional depictions and ontologies of cancer, gesturing as they have towards the linear bifurcation of either death or cure (Broom et al., 2022; Kenny et al., 2023). Instead, participants were left to reckon with the unbound temporalities of chronic malignancy: a respite from the certainty of death, a ‘holding station’ (Berlant, 2011: 199) for the anxieties of living with cancer and an anticipatory zone of future innovation. Existing at the complex intersection of both cutting-edge biomedicine and everyday mundanities could be an unnerving and alienating experience for participants, who had no recourse to shared structures and experiences on which to model living with cancer in the precision era. Temporarily arrested, cancer was understood as lying ‘dormant’ but ever-present within the body, a viscerally felt presence, charged with the ever-present fear of ‘reawakening’. For participants, living with chronic malignancy was thus experienced as an impasse, a dormancy, an arresting of growth to ‘buy time’ until the technoscientific potential of precision medicine, or a cure, could be actualised, but which gave little in the way of narrative structure or avenues for forward progression in the meantime.
Chronic malignancy is precarious not (only) because one’s health has the potential to suddenly decline should the targeted therapies cease to work, but also because the body that is in stasis, and the people who care for that body, have no clear ways to assemble themselves in the current cultural landscape of cancer. Time is often experienced as a gift, or as an asset that is unequally available for purchase depending on the particularities of public vs private healthcare provision (see, for example, Lewis et al., 2026; Williams Veazey et al., 2025). But alongside the vitalities of hope and gratitude, the uncertainty of time brings with it a set of challenges, anxieties and mundanities. Importantly, these challenges that are reminiscent not only of chronic malignancy, but also of living with any number of contemporary instantiations of precarious living, be it in the face of climate collapse, emerging pandemics, unattainable housing and insecure work. Indeed, Berlant introduces the idea of the impasse in relation to waning ideas about the possibility of ‘the good life’, which, as they have faded, more closely approximate the ‘embodied affective rhythms of survival’. She suggests that: a spreading precarity provides the dominant structure and experience of the present moment [. . . and] raises questions about to what degree precarity is an economic and political condition suffered by a population or by the subjects of capitalism generally; or a way of life; or an affective atmosphere; or an existential truth about contingencies of living, namely, that there are no guarantees that the life one intends can or will be built. (Berlant, 2011: 192)
Here, we have explored how living with cancer in the era of precision medicine requires navigating a complex affective, embodied and temporal landscape, where traditional cancer narratives dissolve into the precarious, unbound temporality of chronic malignancy. In better understanding the nuances of chronic malignancy and the precarious existence this entails, we might also better understand some of the dimensions of precarious living, more generally.
Footnotes
Acknowledgements
The authors would like to thank the participants in this research for generously sharing their experiences with us. We would also like to acknowledge that this research was made possible by funding from the Australian Research Council (DP190100745/DE220101498/ DE240100074). Finally, this work was carried out on the unceded land of the Gadi people and we pay our respects to their Elders, past and present.
Ethical considerations
This research was carried out with ethics approval from the Royal Brisbane and Women’s Hospital ethics committee (approval no. HREC/2019/QRBW/50345: Precision and the person: A sociological study of therapeutic innovation in cancer care).
Funding
The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: The Australian Research Council (ARC) supported this research through a Discovery Program Grant (DP190100745). Katherine Kenny and Leah Williams Veazey are supported by ARC Discovery Early Career Award Fellowships (DE220101498/ DE240100074).
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
