April 10, 2024, by Cancer Rose
DOI: 10.1177/13634593241234481
journals.sagepub.com/home/hea
Authors of the article :
Christina Sadolin Damhus, Post doc PhD , Centre of Research and Education in General Practice, University of Copenhagen, master in Public Health. Danemark
Mette Bech Risør, professor in medical anthropology at the University of Copenhagen, Center for General Practice, Department of Community Medicine,The Arctic University of Norway, Norvège
John Brandt Brodersen, general practitioner, PhD in public health, Danemark ; Department of Community Medicine, The Arctic University of Norway, Norvège
Alexandra Brandt Ryborg Jønsson, anthropologiste médicale, travaille dans le champ des inégalités en santé avec un focus spécial sur le surdiagnostic à l'Université de Copenhague, Danemark ; Department of Community Medicine,T he Arctic University of Norway, Norvège ; Department of People and Technology, Roskilde University, Danemark
While the logic of early diagnosis benefits some, explain the authors, it also has harmful effects.
The aim of this article is to demonstrate how time in developed societies is perceived as linear, ineluctable, irreversible and rapid. And how this vision, concomitant with the totalitarianism of social acceleration demanding urgency in healthcare action, has conditioned the logic of diagnostic urgency, and the dictate of early detection: "the sooner the better".
The authors, who include an anthropologist, analyze how the logic of early diagnosis has established itself as a stable concept, and how the message "the earlier the better" is currently unchallenged by research, politics or society, despite the lack of evidence to support this logic, and the unpredictable complexity of the cancer genie.
They believe this can be explained, at least in part, by a linear perception of time and the societal traces of neoliberalism and acceleration in our society, as well as by the fact that cancer is seen as an enigmatic disease that requires immediate action.
"Continuing the linear perception of symptoms and cancer, risks doing more harm than good by making more people patients unnecessarily and by spending health resources on those with the least need."
What is CPP in Denmark?
Variations in cancer survival between countries have been explained by a supposed delay in diagnosis and treatment, and this view reflects the importance placed on time in our societies, convinced that delays in diagnosis and treatment can be reduced by national screening programs and early cancer control initiatives. Accelerated cancer patient pathways (CPP), for example, have been in place in Denmark since 2007, and similar strategies are being introduced in the rest of the so-called Global North, i.e. developed and similarly developed countries.
The authors write:
"The rationality behind these strategies is rooted in the logic that early detection of symptoms of cancer (such as blood in stool or lump in the breast) can either (1) prevent cancer from occurring or (2) detect cancer at a localised stage and thereby reduce morbidity and mortality of cancer."
Within this context, GPs can refer their patients for hospital diagnostic tests when they present with vague or non-specific symptoms of cancer, such as fatigue or weight loss. In short, the phrase "the sooner the better" summarizes the essential principle of the logic of early diagnosis, and is taken for granted by everyone, public and doctors alike, due to the societal and cultural factors that influence our perceptions of time in relation to diagnosis. The authors take a closer look at these factors.
What adverse effects are we talking about?
"Globally, overdiagnosis; making people unnecessarily into patients by detecting patho- logical changes that was never going to cause harm (Brodersen et al., 2018) is rising (Glasziou et al., 2019). A body of research shows, that part of the overdiagnosis stems from finding cancerous cells ‘too early’ as many will never develop or grow into disease, yet, the benefits of ‘early diagnosis’ are stated in both medical sciences and societal discourses. Hence, there is a need for cross-disciplinary research that nuance and provide deeper understandings of the ‘early diagnosis’ paradigm."
According to the authors, " diagnostic procedures, particularly in cancer, are based on manifest moral imperatives and understandings of time, symptoms, and disease that permeate research, individuals, and society. ", even though the best available data suggest no benefits from such an initiative, but rather drawbacks. This conviction is echoed in speeches on the benefits of early detection, and permeates public sentiment.
The problem: our linear perception of time
Damhus et al. state: " In this paper, we argue that the rationale of the logic of early diagnosis is linked to notions of time and how citizens in the Global North interpret time as linear, cumulative, irreversible, and fast moving (Ostenfeld-Rosenthal and Bjønness, 2003). Thus, having a linear perception of time, we often tend to orient ourselves towards the future.."
The notion of time should not be taken for granted. The authors detail how, for some sociologists, conventional temporal periodicity (days, months, years) is socially derived, while for others, anthropologists, temporal categories are adaptations to the physical environment. Some societies have a cyclical view of time, rather than a linear one like ours.
Historically, however, the authors believe that the industrial period, with its factory work, favored this vision of a segmented and sequenced life, followed by the emergence of the money economy, which linked time to profit, insofar as saving time also meant saving money, and the introduction of a moral aspect whereby time must be properly used.
The authors refer to the German sociolologist Hartmut Rosa, according to whom social acceleration predominates in our society today, " both explained as technological acceleration but also as the acceleration of social change and acceleration of the pace of life (Rosa, 2010). Undoubtedly, this paradigm of time as linear, cumulative, and accelerated is also present in how the link between time and cancer has been established within various research disciplines".
In a very often arbitrary way, a delay is assigned to each stage of the cancer's evolution. In this way, the acceleration of response time is a major quality of early diagnosis. In addition to the characteristic acceleration of health action, there is the idea of empowering individuals through improved health literacy. This not only guarantees freedom of choice, but also imposes greater responsibility on the individual, encouraging them to govern themselves according to health behaviours deemed appropriate.
Within the framework of what sociologists call "biological citizenship", say the authors, "citizens are promised empowerment through the dissemination of national awareness campaigns and encouraged to take proactive steps in seeking healthcare. In this context, a prompt response is seen as the desirable outcome, with the individual being regarded as the responsible agent for their own health. However, if individuals fail to adhere, they are not only blamed by others but are also likely to blame themselves. This places a significant burden on individuals to conform to societal expectations and reinforces the notion that timely action is crucial for positive health outcomes."
The aim of this article is to explore how different notions of the linearity of time are essential in cancer research, to understand the individual and societal consequences, and to invite a rethinking of time in cancer progression.
Tumor size does not correlate with time
The authors refer to Gilbert Welsch, an American oncologist who has worked on models of cancer evolution and devised an explanatory diagram illustrating why screening ultimately fails in its primary mission - to find the most serious cancers, which are often too rapid to be anticipated - and conversely overdetects cancers that pose little or no threat, but are sufficiently indolent to be easily detected.
"Cancer does not represent one disease. Tumour biology, growth, and aetiology are much more complex, both within the organ-specific tumour and between different cancer types (Welch, 2022). As put by physician and cancer researcher H. Gilbert Welch: ‘In clinical practice, to say that a person has cancer gives as little information about the possible course of his disease as to say that he has an infection. There are dangerous infections that may be fatal, and there are harmless infections that are self-limited or may disappear. The same is true of cancers. Cancer is not a single entity. It is a broad spectrum of diseases related to each other only in name’ (Welch, 2022)."
"This complexity is reflected in a Danish epidemiological study comparing the size of head and neck cancers at the time of diagnosis with the size at the start of treatment (Jensen et al., 2007). The authors found that 38 out of 61 tumours grew, but the growth varied between 6% and 495% in tumour volume (Jensen et al., 2007). These large variations in tumour growth, within the same cancer type, exemplify the complexity of tumour biology, which is further illustrated in Figure 1 (Welch and Black, 2010)."
click to enlarge
Figure 1 shows the heterogeneity of cancer progression (Welch and Black, 2010). "Considering Figure 1, cancer-A grows fast, leaving a very short window of opportunity from symptoms to treatment before the person will die of that cancer. These are often referred to as aggressive tumours, and no screening programmes or early cancer initiatives seem to be able to detect them at a localised stage. Cancer-B grows slowly, and the open window of opportunities from symptoms to the person’s death is longer. For some B-cancers, this enables screening participants and patients seeking their GP to be diagnosed with a localised cancer, and via treatment, these patients might not die from their cancer. Cancer-C grows very slowly, and the patient will die of other causes before the cancer will give any symptoms. Cancer-D+E are non-progressive conditions that meet the pathological definition of cancer but never cause symptoms (D), and some grow and then regress (E). This suggests that for B-cancers, timely diagnosis and treatment might reduce cancer mortality. In contrast, cancer C+D+E might be harmed by being overdiagnosed, meaning that they receive a diagnosis that will not cause them disease in their lifetime (Brodersen et al., 2018)."
Here's a slightly different version from the article "How cancer develops":
The very aggressive cancer corresponding to the rapid form is missed by screening.
Slow-onset cancer is anticipated by screening, but would have manifested itself and the patient would have consulted a specialist in good time. As metastatic time is very long, we have plenty of time to treat and cure.
For the other three forms of cancer, which would not have caused any problems, screening is of no use, and it is for these last three forms (parenthesis) that overdiagnosis occurs.
"Put simply, overdiagnosis occurs because it is not possible to determine if a detected cancer is an A-cancer or one of the other cancers (Figure 1). Thereby, some cancers are diagnosed and some of these are treated, although these cancers would not have caused disease in the person’s lifetime. According to an Australian study, approximately 20% of cancers diagnosed in Australia are overdiagnosed (Glasziou et al., 2019). Besides the physical harms from possible overtreatment, these patients risk negative psychological consequences and labelling effects of getting a cancer diagnosis (Bond et al., 2013).
To recap, the different aetiology and growth of cancer tumours imply that early diagnosis of cancer can reduce cancer mortality for some, but others are overdiagnosed and overtreated. This means that even within the same cancer type, it is difficult to estimate the benefit of expedited time between symptoms, cancer diagnosis and cancer mortality."
The logic of early cancer diagnosis
In oncology, to control the effects of delayed cancer diagnosis, time is managed as a variable that must be controlled, or at least corrected, while studying the results. This is why cancer epidemiologists divide time into intervals. Figure 2 is commonly used in early cancer diagnosis studies to facilitate uniform, standardized definition and reporting of studies in this field (Weller et al., 2012).
Click to enlarge
It is therefore for convenience and quite theoretically that time is composed of different intervals ranging from the first time the patient experiences a potential symptom of cancer to the start of treatment.(Figure 2)
We thus distinguish "a patient interval, a doctor interval and a system interval" corresponding to each period of time when a delay may occur in the linear process from symptoms to treatment. This subdivision is theoretical.
As the authors remind us:
"Within cancer epidemiology, the ideal study design includes a randomised controlled trial where some participants are included in a study arm that delays the diagnosis of cancer and others are not. However, the perception that rapid diagnosis of cancer is essential means that patients are unlikely to participate, and makes ethical approval difficult or even impossible to obtain."
In fact, at the very beginning of screening, cohorts of people who had never been screened were included in comparative studies with two groups, one screened and the other unscreened, where the effect of screening was studied in relation to the unscreened group.
Nowadays, this kind of study is no longer possible, as it is considered unethical to set up a "no screening" group, i.e. to exclude a person from the possibility of being screened, considering that there is a lack of chance for them, while we lack the evidence to rule on whether or not accelerated cancer diagnosis is really beneficial in terms of mortality or morbidity.
Returning to CPP (accelerated pathways for cancer patients), a Danish study investigated the length of the diagnostic interval before, during and after the implementation of CPP, the results of which are summarized by the authors of this article:
"The authors found that the diagnostic interval (see Figure 2) was shorter after CPP implementation, but no favourable development in tumour stage across the time of CPP implementation was observed (Jensen, 2015). This again points to the complexity of whether the logic of early diagnosis can prevent disseminated cancer. These are a few examples from the epidemiological literature, but current epidemiological evidence does not suggest any clear association between early diagnosis and improved cancer outcomes as a whole."
Despite a number of studies demonstrating the unmanageable complexity of cancer evolution patterns, making the benefits of screening hypothetical (read here, and here), current research is still very much focused on the discovery of new anticipatory technologies, such as the analysis of circulating tumor DNA or blood markers (see summary on liquid biopsies).
We always think of cancerous time as a linear, ineluctable continuum, whereas this pattern may exist, but other paths also exist, such as stagnation, regression, rapid evolution of the tumor followed by stagnation, slow evolution that can accelerate, etc....
This is what the authors report:
"The underlying concept is that symptoms or even biomarkers exist on a continuum, developing in a forward-moving manner if not slowed down by detection.
Figure 3 suggests how symptoms increase clinical significance, thus becoming more and more indicative of cancer (Vedsted and Olesen, 2015). This figure shows symptoms on a continuum from ‘certainly not serious’ to ‘low-risk-but-not-no-risk’, ending with ‘definitely serious’ (Vedsted and Olesen, 2015). However, this contradicts Figure 1, in which some but not all cancers will progress into serious disease (Welch and Black, 2010)."
But this figure, again highly theoretical, is misleading, because, say the authors "studies suggest that even 'certainly severe' symptoms, also known as cancer alarm symptoms, are widespread among people seen in general practice, but have a low positive predictive value (PPV) of cancer (Svendsen et al., 2010). For example, in a given year, 15% of the Danish general population had alarm symptoms of breast, colorectal, urinary or lung cancer (Svendsen et al., 2010).
However, only a small number of these 15% will have cancer (Svendsen et al., 2010). Importantly, the logic of early diagnosis expressed in Figure 3 has been the rationale for lowering the threshold for when to suspect cancer in general practice. With the introduction of the CPP for non-specific symptoms of cancer (NSSC-CPP), people with the so-called ‘low-risk-but-not-no-risk’ are eligible for intensive cancer diagnostic work-up."
The military semantics surrounding the cancer discourse amplify this aggressiveness and haste when apprehending cancer. People "fought" cancer, or on the contrary, "after a long struggle, the person succumbed". The myth of the "cancer-hero" is very present, and when it comes to cancer, we demand in return an attitude of counter-attack and strong action from the medical profession; so we "fight" the disease, we have a "therapeutic arsenal", we "fight" cancer.
In his historical analysis of breast cancer, Robert A. Aronowitz, M.D., professor of social sciences, explored "how popular and medical writings and public health messages about cancer since the beginning of the 20th century have consistently exhorted women and men to seek medical attention as soon as they notice any symptoms that could signal cancer (Aronowitz, 2001)."
"Aronowitz argues that the unknown aetiology of cancer, medical uncertainties in treatment, and the gaps between specific cancer cases and the cancer ideal-type rein- forced blame and responsibility. The ‘delay message’ made people responsible for their disease while at the same time minimising some of the existential, moral and medical uncertainties of taking care of individual patients for clinicians (Aronowitz, 2001)."
"The ‘delay message’ made people responsible for their disease while at the same time minimising some of the existential, moral and medical uncertainties of taking care of individual patients for clinicians (Aronowitz, 2001)."
While facts, studies and real-life findings point to bushes of possibilities for cancerous progression, and show that tumor size is not linearly correlated with time, despite this, the authors relate: "In the Danish national cancer plan from 2005 is stated: ‘Studies investigating the effect of delays on prognostic factors for these cancers point in different directions, and the effect is thus not finally clarified’ (Danish Health Authority, 2005). "
There is doubt about the real effectiveness of accelerated diagnostic procedures, however: " Despite uncertain evidence, the government introduced fast-track CPPs as part of the national cancer plan (Danish Health Authority, 2005).."
We've attached images of clinical cases illustrating the lack of size/time correlation in breast cancer.
"First symptoms"?
Figure 2 - click to enlarge
Damhus et al. argue that this view assigns responsibility to the various players in the pathway, in particular the patients themselves as well as the doctors.
"The first interval is named first symptom and is part of the patient interval. This holds two principles: (1) that such thing as a first symptom exists (2) and that the individual can recognise and is responsible for reacting to such a first symptom. However, by drawing on others and own ethnographic work with patients investigated with the suspicion of cancer, we found that first-symptoms are not that simply put as people did not always experience their bodies in such a linear, forward-moving process (Damhus et al., 2022a; Merrild and Andersen, 2021)."
"Too late", or "early enough", these terms make no sense when we realize the illusory nature of the correlation between symptoms and cancerous stage. And yet, how often do we hear, in a consultation, of patients who are conveniently blamed by the medical profession for having "waited too long", and who are completely ignored when they tell of the sudden appearance, sometimes over a weekend (personal experience, editor's note), of a palpable tumour in their breast?
"Additional, in Figure 2, by referring to a patient interval," the authors note, "there is an implicit expectation that the individual is responsible for taking action in terms of reacting on symptoms and appropriate healthcare seeking.
This responsibility is not new as citizens have long been made accountable for acting on potential symptoms of cancer in a timely matter (Aronowitz, 2001). In the 1920s, the unknown aetiology of cancer reinforced physicians to blame time or the patient if bad outcomes happened. Importantly, neoliberalism did not create cancer as an acute disease, but rather confirmed and amplified the logic that was already established. This by encouraging individuals to govern themselves, creating space for individual action and involvement, but also assigning blame if the individual does not succeed."
To quote the German sociologist Rosa again:
"The responsibility of reacting on symptoms and seeing the doctor in time, comes with the counterpart of not wasting the doctor’s time, by seeing the doctor too often. Not to waste time and the moral obligation to make good use of time, Rosa and others argue is characteristics of our current society where market logics including features of competition have accelerated the pace not only in technological development but to all part of social action in our society (Petersen, 2016; Rosa, 2010)."
"The earlier the better" as a stable concept in the North
As long as we recognize the importance of early diagnosis, in medicine, in research and in technological innovations to track down the 'ever-smaller', and regard precocity as a valuable biomedical perspective, then the fundamental underlying logic of linearity of time in cancer development has not been fundamentally challenged.
Why does "the sooner the better" intuitive but fallacious logic still persists in our time?
Perhaps because, despite the fact that this logic is fallacious, we don't have a better or more precise one, and it's convenient and easy to teach.
The authors do, however, warn of the damage of this overly comfortable vision of the quest for ever earlier and smaller.
"Where the logic of early diagnosis benefit some, the logic also produces harms such as overdiagnosis, overtreatment, internalised expectations of moral responsibility and embodied changes in health practices. Further, the logic of early diagnosis has expanded the population of who is eligible for diagnostic cancer testing, which does not come without consequences. First, the expansion has complicated the answer to what constitutes symptoms of cancer? This (research) question needs its own analysis, but our present analysis indicates that, we might all have symptoms of cancer which might vanish the meaning of cancer symptoms. Second, investigating more people with the suspicion of cancer, risks spending healthcare resources among those with the least need, which on the societal level is not sustainable in a public funded healthcare sector with limited resources. However, the more than 100 years old assumption ‘cancer is curable if taken in time’ (Aronowitz, 2001) hasn’t changed but is exactly the same as the message from the newest malign melanoma campaign from the Danish Cancer Society, ‘malign melanoma is curable if taken in time’ (The Danish Cancer Society, 2023)."
"It is striking, that despite the lack of evidence to support this message, no researchers, politicians or individuals seem to challenge the logic of early diagnosis within cancer diagnostics. Within our linear understanding of time, death is the end. Death is feared and regarded as something that should be avoided or at least postponed by us. Such paradigms coupled with the fact that cancer is a leading cause of death, support the increased focus on cancer prevention and legitimises the logic of early diagnosis. Rosa argues that social acceleration has become a totalitarian force in and of modern society (Rosa, 2010). To Rosa, a power is totalitarian when it exerts pressure on the wills and actions of subjects, when it is inescapable, when it is not limited to one area of social life and when it is hard or almost impossible to criticise and fight it (Rosa, 2010)."
This is certainly the case in our post-modern societies, where the concept of anticipating disease at all costs through a multiplication of biological and imaging tests is publicly perfectly incontestable, on pain of being branded a non-progressive or, worse still, a life-threatening menace.
The media are, for the most part, impervious to any questioning, and our experience in the Cancer Rose collective has been burdened by refusals to publish interviews we've given, due to editorial roadblocks. (Editor's note)
Conclusion
The authors argue " there is a need to question and nuance this somewhat linear and stable ontology of time and cancer within the logic of early diagnosis. We acknowledge such attempt might fail, among others, due to our linear perception of time and the totalitarian characteristics of social acceleration, constituting central elements of the logic of early diagnosis."
They write:
"Thus, evidence from different scholars suggest that symptoms and cancer are much more complex than this linearity, the logic of early diagnosis has survived, both within political decisions on cancer prevention, different research disciplines and within the public awareness about cancer. We argue this, at least partly, can be explained by the power of a linear perception of time and societal traces of neoliberalism and acceleration in our society together with cancer still being a somewhat enigmatic disease that requires acute action. To support a sustainable healthcare sector, we argue there is a need to nuance the logic of early diagnosis. Structural primary prevention of cancer is unquestionable important in today’s societies but continuing the linear perception of symptoms and cancer in medical prevention, risks doing more harm than good.
In short, by making more people patients unnecessarily and by spending health resources among those with the least need."
Related literature
An excerpt of the book "breast cancer screening, the big illusion", T.Souccar ed. by B.Duperray, former radiologist at Saint Antoine Hospital (Paris): https://cancer-rose.fr/en/2021/03/17/a-book-breast-cancer-screening-the-great-illusion/
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