Luckily—I am not the worrying kind: Experiences of patients in the Danish cancer patient pathway for non-specific symptoms and signs of cancer

Setting

The analysis in this study is based on: (1) observations of participants referred to the NSSC-CPP at their first consultation in the diagnostic centre at Roskilde Hospital, Denmark; and (2) semi-structured interviews with the observed participants at two points after their initial consultations.

People referred to the Danish NSSC-CPP first undergo a panel of diagnostic investigations often including blood panel and CT scan. If no diagnosis is made, but cancer is suspected the GP can refer patients to a diagnostic centre at hospital which continue the diagnostic work-up. A diagnostic centre is a hospital-based medical centre with comprehensive facilities for medical investigation, including easy access to expertise across a wide range of medical specialities. According to the guidelines of the NSSC-CPP, before referral, the GP must inform the patient that they are being investigated with the suspicion of cancer. As this is a fast-track pathway, the patient will be referred to diagnostic tests within few days after referral from their GP.

For permission to observe patients in the diagnostic centre, the first author contacted the two lead clinicians working there and it was agreed that for a period of 3 weeks, the first author would observe all patients attending their first consultation as part of the NSSC-CPP. These consultations last approximately 30 minutes with a medical doctor. The doctor often starts the consultation by asking if the patient knows why they have been referred. This is followed by an anamnesis (the patient’s own description of symptoms and medical history) and a clinical examination. After the consultation, the first author asked patients if they would agree to participate in telephone interviews. All patients (eight) accepted the invitation and gave informed consent.

One participant withdrew from the study explaining that she did not have the energy. Another participant died during the study. Therefore, the following analysis is based on empirical data from six participants, one man and five women, in the age range 52 to 89 years.

Data collection

Patient observation and recruitment for interviews were completed over 3 weeks in January to February 2021. Due to COVID-19, the semi-structured interviews were conducted by telephone. The first interview took place 3 weeks after the first consultation and served to create a relationship and safe environment between the participant and the first author. The interview guide included themes of: remaining/new/changed bodily sensations, symptoms, descriptions of everyday life, involvement of family/friends/workplace in the NSSC-CPP, and potential worries about cancer. Approximately 3 months later, the first author called the participants again. The aim of the second interview was to follow-up on participants’ sensations and symptoms, thoughts about the pathway, potential worries about cancer and how these interacted with everyday life. Interviews from the two time points lasted in average 45 minutes ranging from 15 to 90 minutes and were digitally recorded and transcribed verbatim by the first author. These transcriptions and the field notes taken during participant observation in the diagnostic centre constitute the data material for this study.

Data analysis

Data were analysed with inspiration from the ‘data-mining’ method described by Ramian (Ramian, 2012). This method includes an inductive thematic analysis resulting in first generation results which thereafter are questioned with a second level of analysis that includes more precise questions. First, transcriptions from the interviews and field notes were read through several times to get an overview of the data material. Using an inductive thematic analysis approach (Braun and Clarke, 2006) the first author coded the data with no pre-existing coding frame resulting in a number of central themes. These themes were discussed with the last author which challenged their entitlement. The Nvivo software was applied for this first step. To be able to follow the process of the NSSC-CPP, from first consultation to the time after the NSSC-CPP journey had ended, the first author also coded the data individually for each participant. A short participant summary or portrait was written to get a better hold of individual stories. This summary was based on field notes from the consultation and was added to after the first and second interview – thereafter, rewritten to a portrait. A central theme from the first thematic analysis formed the second level analysis. This theme focussed on the absence of a specific worry about cancer, and in the second level analysis, therefore, we tried to explore further how participants talked about cancer and to what extent anticipation about cancer might be perceived, given meaning to, and understood in the context of the local and situational settings of the participants.

Ethical considerations

Participants gave informed consent to be observed in the diagnostic centre and for the first author to call them at two time points after their consultation. The participants were told about the project beforehand and project information flyers were hung in the waiting room of the diagnostic centre. Even so, asking patients about their cancer worries without worrying them was a delicate balance. At their first appointment, the doctor told participants that the aim of the consultation was to rule out the suspicion of cancer. This gave the first author an entry point to discuss the topic of cancer and the uncertainty surrounding diagnostic tests. The first author was introduced as a researcher with education in public health, but with a non-clinical background and not employed by the diagnostic centre or the hospital.

What counts as symptoms?

At the diagnostic centre, participants were encouraged by the doctor to talk about why they were there. This standard procedure was to make sure that participants knew that the aim of the assessment was to dismiss the suspicion of cancer. The doctors in the diagnostic centre had a list of questions on potential symptoms and disease-related observations, but also had a more open approach to give the participants room to unfold their stories and elaborate on different aspects of their everyday lives.

The following description of Andrea’s consultation indicates how her interpretations of symptoms and her narrative are interpreted in the frame of what the diagnostic centre does.

Andrea shows up to the diagnostic centre alone. Andrea is 50 years old. Tall and slim, she looks tired and is nicely dressed in a brown leather skirt, boots with heels and she is wearing blue nail polish. She was referred by her GP based on significant weight loss and because she started vomiting over Christmas and New Year. Before entering the diagnostic centre, Andrea had discussed with her GP the risk of her symptoms being related to cancer. Thereby, Andrea knows why she in the diagnostic pathway and the doctor in the diagnostic centre starts by explaining that Andrea’s CT scan and mammography indicate no signs of cancer and asks further how the weight loss started. Andrea has lost her appetite and thinks it might be due to a previous depression coming back or due to menopause. Therefore, the doctor asks how Andrea’s mother experienced her menopause, arguing that we often resemble our mothers in that sense.

Andrea answers: I guess my mother would say that everything was fine until her death last year, she was quite an odd woman.

The doctor: How did she die?

Andrea: It was suicide actually.

Room of silence. The doctor breaks the silence, seemingly surprised about this new information. Previously in the consultation, Andrea said that no major life events had happened recently. Andrea explains that the suicide happened last fall – the same time as her weight loss started. ‘I was not sad when she died but I was angry with her, she knew it was my father that was going to find her afterwards’. At the end of the consultation, the doctor asks Andrea if anyone is following-up on the previous depression (indicating if Andrea seeing a psychologist). No one, Andrea answers, but I have some close friends I talk to. The consultation ends and the doctor recommends a stool test (we cannot ignore such a great weight loss, the doctor tells the author afterwards), but mentions that Andrea is most likely to be taken out of the pathway after the stool test, as the doctor believes that her symptoms are not caused by serious physical disease. Andrea goes from the doctor’s room to the nurse’s room for advice on how to eat to gain weight. The nurse recommends, for example, that Andrea should eat marzipan instead of fruit to get more calories. Andrea receives a pamphlet about diet suggestions as the nurse says: ‘this pamphlet can give you some inspiration’.

Kathryn Staiano-Ross has described how collections of symptoms, from a biomedical tradition, tend to become ‘fixed’ within the diagnostic ordering of problems (Staiano-Ross, 2012). Once created, diseases are rarely challenged. The patient’s symptoms, however, may be adjusted to meet the need for order and attribution. In Andrea’s case, her symptom – weight loss – fitted within the diagnostic ordering of cancer. However, when Andrea mentioned that her weight loss started at the same time as her mother’s suicide, together with the diagnostic tests showing no abnormality, the doctor no longer explained her weight loss within the frame of the diagnostic pathway. However, Andrea was given the diagnostic work-up within the diagnostic centre’s remit (stool test and diet advice), which reflects the diagnostic framework and scope of order in the diagnostic centre.

Susanne’s case exemplifies how issues of importance can differ between the doctor and the patient. A few days before the diagnostic consultation, Susanne was hospitalised with pulmonary embolisms and was referred to the diagnostic centre by the doctors in the respiratory department who suspected that her lung embolisms might be caused by cancer.

Susanne is 75 years old and seems a bit irritated to be in the diagnostic centre. She is not really sure why she is there but when the doctor mentions the suspicion of cancer, she does not seem surprised. Susanne’s voice sounds like she has been smoking for decades, she is short of breath, not friendly-looking and seems to maintain a facade of toughness to keep a distance between herself and the doctor. Her son is with her, and he interrupts the consultation a number of times to correct his mother when he thinks she does not give the doctor the correct answer. Susanne is tired from the hospitalisation, and she has a painful headache which both she and her son mention.

Susanne: Can it be the medicine that causes the headache?’

The doctor: Headache can be caused by a number of things so it is only if it gets worse you can go to your own doctor (GP), but it is not something we can do anything about here.

The doctor ends the consultation by asking if Susanne thinks he has forgotten to ask her anything and Susanne brings up her headache again.

In this case, the doctor’s job and agenda were, as always, to dismiss the suspicion of cancer while for Susanne, the important thing to talk about was her headache. This could not be addressed or handled by the diagnostic centre, which seemed frustrating to Susanne, perhaps even more so because she was not sure why she was in the diagnostic centre in the first place.

In the two examples above, the symptoms presented by the participants were evaluated by the doctor as either a fit or not a fit into existing disease categories and diagnostic patterns by which the symptoms can be explained and acted upon within the frame and technology of the diagnostic centre. In this biomedical tradition, there is a notion of a ‘real’ relation between the internal object and the symptom (Staiano-Ross, 2012). There is little room for how the symptoms acquire meaning and how such meaning is affected by human perceptual skills, for example, how Susanne emphasises her headache and Andrea understands her weight loss. Also, in one of her studies on the role of sonograms during pregnancy, Rayna Rapp, a professor within anthropology, describes how technology bypasses women’s multifaceted embodiment and consciousness, providing independent medical knowledge of the foetus (Lock, 2007). The technological framework reduces the relevance of symptoms where the women act as gate keepers of their own bodies (Lock, 2007). For Andrea and Susanne, their CT scans indicated no signs of cancer which became the important finding and overruled their bodily sensations, symptoms and their role as gate keepers to these sensations. Thereby, the abnormalities that can be viewed through technology become the important ones requiring attention and action, and the present study shows how the CT scan dictates a procedural action. Moreover, the context of the diagnostic centre legitimised some symptoms, while others were unremarked. The doctor’s focus was on potential tests for non-specific symptoms and clinical signs of cancer while the participants’ focus was on their bodily sensations overall. This discrepancy, however, did not show itself as a dramatic confrontation in the consultation. The participants largely accepted the doctor’s way of differentiating between relevant cancer symptoms. Participants were very satisfied with the doctors in the diagnostic centre as they felt they met doctors who listened to them and took their perception of symptoms seriously overall.

I do not feel sick. . . and also my blood tests look fine

As part of the interview guide, we encouraged participants to talk about their thoughts and feelings regarding potential worries about cancer symptoms in relation to waiting for test results and their bodily sensations. Interestingly, participants often argued that because they did not feel sick or that their symptoms did not feel like cancer, they were not worried about cancer. Participants experienced symptoms such as headache, fatigue, weight loss and joint pain, which were not immediately interpreted by the participants as related to cancer, either before or after their first consultations in the NSSC-CPP. They elaborated that when you have cancer you cannot go to work or continue usual everyday life activities – that is what cancer feels like. When asked about being worried that their symptoms might be related to cancer, Andrea said: ‘I never have the thought, I would think, I would have 47 other symptoms, if it was something like cancer’. Another participant, Ann, an 89-year-old woman, was referred to the diagnostic pathway after a regular blood test indicated abnormal liver function. Ann expressed it as follows: ‘I don’t have any pain or symptoms of cancer; I have this stupid “liver-level”’.

The participants noticed their bodily sensations, but they did not acknowledge them as signs of serious disease. Following Alonzo, containment can be said to occur if body state deviations and normal processes can be kept at the level of a side involvement, definitional and participatory, in order to sustain the integrity of the situation for the individual and others (Alonzo, 1984). As such, Andrea’s weight loss, for example, could be contained because it did not interfere with her everyday life as she continued her job and social activities, and she had her own explanatory model for it.

Another argument for not being worried about cancer was presented when participants mentioned, and often repeated during the interviews, that the doctor had told them their diagnostic tests did not indicate anything abnormal.

Tom, a 70-year-old participant was referred to the diagnostic centre based on a slightly low blood count found in a routine consultation. He reported no symptoms when he arrived with his wife for the consultation. He said: ‘My own doctor told me that I looked good, so neither from their perspective have they seen any disease. It was only that blood level that started it all and made them finally send me to the diagnostic centre, which could not find anything either’. Tom’s GP had referred him to the diagnostic centre but when asked, Tom did not know that he was referred with the suspicion of cancer, which indicates that some miscommunication might have happened in Tom’s consultation with his GP. During the two interviews with Tom, however, he repeated four times how the doctor had dismissed a suspicion of cancer. It seemed as if Tom’s own feeling of not feeling sick was not enough for him to feel safe, and he needed to be supported by the ‘word’ of the doctors and the diagnostic tests. Tom added that he would have been worried if he had received what he termed a ‘half diagnosis’ – by this he referred to biological findings that might not be definitive, but for which he would need further control-appointments or tests. Along with Timmermans’ and Buchbinder’s concept of ‘patients-in-waiting’, Tom’s description of a ‘half-diagnosis’ troubles the experience of anticipation, where individuals are under medical attention for extended periods of time, lingering between pathology and a state of ‘normalcy’, due to abnormal test results (Timmermans and Buchbinder, 2010). Timmermans and Buchbinder argue that this state is characterised by uncertainty about disease, and that people experience illness despite the absence of symptoms.

A similar uncertainty in waiting was expressed by the 51-year-old Maria who found a lump in her groyne while doing yoga. Maria was still waiting for the final results of tests when interviewed the first time. Maria expressed her nagging feelings like this:

It is like there is an elf – no it is not an elf, because the elf is nice, it is more like a troll telling me – you never know – it can be more than you think it is, and I keep an eye on it, and it hasn’t changed so in that sense I feel safe but of course I think – is it something that should stay there? Do they have to remove it? Or could it be a disease? – but still all my numbers (blood samples) look fine, that is strange, but I am good at not letting the troll take over.

Maria is in a state of anticipation that influences her attention, both towards a temporality of sensations and trying to manage her waiting period emotionally and literally, by personifying her thoughts, first as an elf, then more like a troll. Still, this uncomfortable uncertainty was not translated into ‘worry’ when Maria was asked more directly, in the first interview, if she felt worried about cancer: ‘No, not at all, I can feel that this is not dangerous because my body is so functional and I take really good care of it’. This indicated that the word ‘worry’ did not fit Maria’s experience, but some uncomfortable uncertainty, expressed as a troll, did. However, when Maria was interviewed the second time, she had received a diagnosis of cancer and her lump had been removed few days before the second interview. Maria was still in pain after the surgery, and of course, the occurrence of cancer formed the interview as it was no longer about worries of cancer, as cancer was now in the room. In the second interview, Maria expressed worries of relapse while still presenting herself as a strong, positive person that would get through this. As cancer was now present, Maria was no longer in a state of anticipation which seemed to legitimate worries about relapse.

Not the worrying kind

When participants were asked about their cancer worries, we found a tendency to create distance between themselves and others who could be described as the ‘worrying kind’. ‘Fortunately, I am such a positive person, I don’t want to go into any grief or pain before I know if I need to’, Maria argued in the first interview, when asked how she felt about waiting for test results. Andrea reasoned in the same way describing a previous mammography screening when she had to wait 12 days before she got the results:

But it doesn’t help if I take 12 days out of my calendar, sitting, feeling sorry for myself, I think I am one of those people who takes things as they show up instead of suffering in advance. It is a waste of time, somehow.

The participants overall presented themselves as the type of people who do not worry about things beyond their control and this self-presentation continued in all interviews. They defined themselves through their statements and distinguished themselves from other people, emphasising what they were not. This self-presentation speaks to the theoretical perspective of Erving Goffman who uses dramaturgical analogies to describe how all social interaction is a ‘show’ where the ‘self’ of the performer is created in the interaction with the audience (Goffman, 1978). The performers are never ‘real’ as they always play a ‘role’ according to the audience and the context. Goffman suggests that a performer unconsciously tends to conceal or underplay those activities, facts and motives which are incompatible with an idealised version of himself. We suggest that there are traces of performing an idealised version of themselves in the way Maria and Andrea, in the examples above, performed and situated themselves as the opposite of the worrying kind. This is not to dismiss their explanations as untrue, but to situate their responses in the interviews in relation to their socio-cultural context, with ideals of taking control, of being in charge, coupled with positive thinking. Interestingly, anticipation may also be a strategy for avoidance of surprise, uncertainty and unpreparedness and an increase in hopefulness about the test results (Adams et al., 2009).

Using Richard Jenkins’ terminology related to identity, the process of defining ‘us’ demands that ‘they’ should be split off from or contrasted with us; group identification is likely to proceed, at least in part, through categorising others positively or negatively (Jenkins, 2008). In this study, the participants defined their self-presentation as a contrast to the worrying kind by emphasising situations in which their friends and relatives acted as such, and by referring in general to having a personality that is distinct from the worrying kind.

Instead, an ideal self-presentation was performed which may refer to a certain patient role that one should perform in this setting of a potential cancer diagnosis, a way of anticipating the unruly (Adams et al., 2009). By comparison, Offersen and colleagues showed in a study on the moral landscapes of potential cancer, that patients strive to act as ‘good citizens’, who ideally care for and aim to protect the common good of society (Offersen et al., 2017). Being a good citizen implies that the patient is responsible for taking care of their own body, which includes proper and timely interpretation of bodily sensations as symptoms; at the same time, the good citizen does not misuse the system by being a hypochondriac (Offersen et al., 2017). In addition, the ‘good citizen’ has been used to describe the ambivalence individuals face when they try to identify the right time to consult a GP (Ziebland et al., 2019). The role of the good citizen and the wrestling with time can be recognised in our study when Susanne explains how she reacts to her bodily sensations after having been in the NSSC-CPP.

I think I go to my doctor a bit earlier than I normally would, when I have these issues with breathing and coughing, I need to be sure that it will not go away on its own, that it is not just a flu, so it may take ten days before I pull myself together and go to the doctor, but I think I will do it faster now. But of course, one should not complain to the doctor about everything.

Being a good citizen addresses the concern of potential illness, but also tames this concern by not fully expressing it as a worry, thus positioning oneself in a group of considerate patients who do not unnecessarily disturb their doctor. Importantly, as visible in the case of Susanne, it is an impossible task to visit the doctor only when it is relevant, as it can only be known retrospectively if patients interpreted their bodily sensations in a timely manner or if they overused the system. Susanne’s case demonstrates that within the role of the good citizen a difficult task is entrusted to the individual.

When participants performed the role of the good citizen and, at the same time, distanced themselves from the role of the worrying kind, they also found it legitimate for their friends and relatives to worry about them.

When Inga, an 84-year-old woman was asked if she had told anyone about her diagnostic pathway she said:

My friends have followed the whole process, because I have felt that I needed to be honest about it, and they were beside themselves with joy when I told them that it was nothing serious, they were just as happy as me.

Maria explained during the first interview that it was important for her to inform her 14-and 17-year-old children about the diagnostic pathway:

I am very honest, so they have to know why things are going fast, and why I have to go to the hospital. Obviously, they are following what is going on, we can see it in each other if we are anxious, so it is better I say it out loud than they walk around and try to sense where I am.

These examples indicate that participants expected their friends and relatives to worry and took the decision to inform them about their journey on the pathway. Within the role of the good citizen, described previously, there is limited space for participants to perform their worries about cancer, but through the involvement of friends or relatives, we suggest that participants indirectly expressed or embraced being worried. The hospital’s recommendation to bring someone to the consultation supported these thoughts and set the frame for thinking about how participants could involve relatives.

The diagnostic pathway – an intertwined part of everyday life

Participants presented the diagnostic pathway as something that should be shared with relatives, but not worried about. When interviewing the participants 3 months later, traces of the pathway were still present in their everyday lives. This can be seen in the way that Tom changed his diet due to his slightly low blood count.

It was because I thought that low blood level was linked to less iron in the blood, and then I found this webpage that recommends what to eat to increase iron, so I have changed my diet according to that, but in the diagnostic centre, they told me that my iron level was normal.

Tom was still on the iron diet when interviewed 3 months after his consultation. At this time, the suspicion of cancer was dismissed but his blood level was still slightly low.

In the follow-up interview, participants said that they had used their GP more than usual after the pathway. Andrea had visited her GP about a fatty lump on her face.

I have felt it for years when applying lotion to my face, but now after the weight loss, I can see it, it lays just below the skin, and I don’t like that– to have a 1.5 × 1.5 cm thing sticking out my face.

Andrea had become more aware of bodily sensations – what she had previously interpreted as ‘just a lump’ was now interpreted as something that needed medical attention.

Through the diagnostic pathway, Maria received a cancer diagnosis and for Andrea, Tom, Inga, Susanne and Ann the suspicion of cancer was rejected. Still, 3 months after their pathway they were all in contact with the healthcare system in some way, either because of remaining symptoms, new symptoms or to Maria; control appointments after treatment. Thereby, uncertainty still existed, and traces of the pathway were present in how participants talked about and paid attention to bodily sensations in their everyday lives. At the same time, everyday life with all its activities, duties, and routines acted the scene for how the diagnostic pathway was to be understood by the participants. This can be exemplified by Inga.

At Inga’s first consultation in the diagnostic centre, she answered the doctor’s question about why she was there like this:

It is because my husband Fred has had a long course of disease, he died in September and the last months I was sitting next to him and took care of him the whole time and therefore I did not take care of myself.

Observing Inga at the diagnostic centre and during interviews, her story was characterised by one integrated narrative. When asked about her pathway experience, she talked about it, but it was intertwined with the story of Fred’s disease. It seemed like it made no sense to Inga to describe one without the other. Brandner and colleagues examined the social contexts of patients’ pre-diagnostic illness experiences and healthcare-seeking and, through the case of Liz, described how the recovery of her husband, for whom she had cared, had finally made her go to the doctor (Brandner et al., 2014). Until then she had contained her symptoms by prioritising her husband’s health. This indicates how everyday life, with its social roles and responsibilities, mediates how and when patients interpret sensations as potential symptoms. Returning to Alonzo’s terminology, participants in this study might contain their symptoms within everyday life, though we argue that being in the diagnostic pathway was not passively contained by participants. The experience became an intertwined part of everyday life, changing it from the inside, and implicitly addressing thoughts, fears and worries as just one part of the narrative, fashioned by moral, identity and social imperatives.

Main findings

By observing participants in the diagnostic centre, we showed how they brought a variety of bodily sensations into the consultation. The diagnostic possibilities within the consultation framed which bodily sensations the doctor could follow up on in the diagnostic process. When interviewed 3 weeks later, participants argued that their symptoms did not cause them worry about cancer because they did not feel sick, and their doctor and their diagnostic tests indicated that they were not sick. This might mirror participants being able to contain their bodily sensations, keeping them at the level of a side involvement. Participants argued against being worried about cancer by distancing themselves from the worrying kind. This, we believe was a performance of an idealised version of themselves which fitted the role of the culturally good citizen. Through the follow-up interviews we found that the diagnostic pathway had become an intertwined part of their everyday lives.

Interpretations of results and comparison with other studies

In this study, bodily sensations and symptoms such as weight loss and headache were not recognised as potential signs of cancer by participants because, among other reasons, they did not feel sick. Similarly, a study analysing the retrospective accounts of help-seeking among patients with colorectal cancer, found that early bodily changes were often vague and rarely regarded as serious as they did not match participants’ understanding of how cancer would manifest (Macdonald et al., 2019).

It is a requirement of being in the diagnostic pathway that patients are informed that cancer is suspected and that bringing a friend or relative to the consultation is recommended, which underpins the severe nature of a potential cancer diagnosis. Thereby, participants were prompted to interpret their bodies in the context of cancer. This unavoidable context of cancer was not transferred into a direct statement of worry about cancer, but we suggest that worries are inherent in the affective state of anticipation which was expressed in several ways and became especially visible in the pathway’s entanglement with everyday life. A study by Frumer and colleagues emphasised that: ‘It is in relation to the contours of everyday life that the meanings of diagnostics are moulded’ (Frumer et al., 2021). Frumer’s study explored the case of Jan and Bente, and how they experienced continuous testing as part of a control programme for lung cancer (Frumer et al., 2021). Testing had become part of their ordinary, entangling everyday life. Similarly, Offersen identified how bodily sensations contain different forms of potentiality depending on the specific time and place, and how a constant weighing of potentials is going on in a seesaw motion between what is normal and what is not (Offersen et al., 2016). In our study, the seesaw motion was apparent in everyday life after the pathway, as participants were more conscious and aware of their bodily sensations. Even though the suspicion of cancer was rejected, participants visited their GP with bodily sensations and symptoms which they were prepared to interpret as potential illness. They were subjects in the domain of the not-yet, in an affective state of anticipation, which functioned as a strategy for avoidance of the potential unpreparedness of disease while, at the same time, keeping uncertainty on the table.

Along the same lines, Offersen and colleagues described how the present public health rhetoric on symptom awareness in Denmark has expanded the illness potentiality of sensations, and this expansion probably merely rearranges the landscape of uncertainty, ambiguity and potentiality – it does not reduce it (Offersen et al., 2016). Further, the scientific and political focus on healthcare-seeking and awareness significantly feeds into mythologies, with their illusions of certainty (Offersen et al., 2018). Our study indicated that participants were not provided with certainty. When they were interviewed 3 months after being in the pathway, the doctors had either dismissed or confirmed the suspicion of cancer, but uncertainty about the causes of their abnormal blood values or bodily sensations still existed. Similarly, a Danish qualitative study based on interviews with patients after completion of the NSSC-CPP found that patients were frustrated because they were still experiencing symptoms for which they had no explanation (Moseholm et al., 2017). They felt that once cancer was ruled out, their treatment and care stopped without further explanation. Also, Moseholm and colleagues found that participants found it difficult to distinguish between the emotions related to the diagnostic process and emotions related to other issues in their lives (Moseholm et al., 2017). This supports our finding that the pathway became an intertwined part of everyday life where interpretations of bodily sensations cannot be examined without the context and life events of the participants.

Attempts to measure emotions such as worry when evaluating healthcare interventions has been present with the introduction of Patient Reported Outcome Measures (PROMs). They aim to collect data related to the patient’s state of health, including physical and mental health (PROSecretariat, 2021). These data are collected by questionnaires completed by patients. In research, similar methods have been used in studies investigating the psychosocial consequences of cancer screening. Both short and long-term negative psychosocial consequences for participants have been found (Brodersen and Siersma, 2013; Damhus et al., 2021; Rasmussen et al., 2020). Based on our findings in this study, we argue that these questionnaires might measure only some of what was intended. We found that worries about cancer were not recognised by the participants but transferred and legitimised through the voices of friends or relatives and were intertwined in everyday life events. This is not just to make a methodological argument, but to stress that the complexity of exploring individuals’ interpretations of their own bodies and health may be subtle and even unconscious. It is important to encourage a broader picture of the individual and their story, situated in context and time. Broadening research traditions is necessary to unfold how the individual interprets and gives meaning to potential worries about cancer.

Strengths and limitations

A strength of this study lies in its design, as we observed participants in the diagnostic centre and interviewed them before they were potentially diagnosed with cancer, not retrospectively. This was a unique opportunity to explore participants’ thoughts and feelings about cancer during diagnostic downstream procedures and in that lingering space between being healthy and being sick. Also, re-interviewing participants enabled a more natural and trustworthy conversation, as the first author came to be involved both in the diagnostic pathway, and in the participants’ everyday life activities and feelings. It seemed like calling participants for the second interview gave them a sense of feeling important and an opportunity to engage in an open dialogue about potential cancer symptoms and everyday life. As the interviews were conducted by phone, the face-to-face observations in the diagnostic centre were important to establish a relation between the participants and the researcher. Also, as the first author was present in the consultation, the participants did not need to repeat themselves, and the interviews could follow up and build upon the consultation with the doctor. Still, in the interviews, the first author repeated her role as a researcher and not employed by the hospital. As we found that everyday life and relatives were important to how and when participants interpreted their bodily sensations as symptoms, it would have been interesting to interview and observe participants in their own homes. This might have given us some insight into important aspects of everyday life which the interviewer did not know to ask about. Unfortunately, due to COVID-19 restrictions, this was not possible.