Illness trajectory of metastatic breast cancer: A qualitative narrative study

Purpose: Breast cancer is accompanied with different psychological consequences. This study investigate to describe the physical, emotional, social, and spiritual characteristics of illness trajectory of metastatic breast cancer (MBC). Method: This is a qualitative study, in which repeated in-depth interviews with 15 MBC patients were conducted. The interview data were transcribed verbatim and analysed as a text, using a qualitative biographic narrative approach. Results: Patient’s narratives about the illness trajectories revealed various physical, cognitive, emotional, social, and spiritual needs at the time of breast cancer diagnosis, and the incidence of metastasis. Positive experiences including personal growth, and negative feelings such as rejection and isolation were reported as patient’s narratives about living with MBC. At the anticipatory phase, the Patient’s narratives were classied into pessimistic and optimistic predictions which were affected by spiritual attitude. Similarly, spiritual as well as religious beliefs were highlighted in psychological reactions and patient’s point of view about death. Conclusions: The MBC trajectory is complicated and each phase of the MBC trajectory includes characteristic tasks and focal points. To move away from the predominant traditional approach towards a more comprehensive and better-targeted service, an increased understanding of the complexities of the MBC trajectory is necessary.


Problem formulation
Breast cancer is the second most common cancer worldwide, and the most frequently diagnosed malignancy in women [1]. According to the last report of the world health organization (WHO) 2.09 million cases of breast cancer identi ed in 2018 [2].
Despite increasing incidence rates, breast cancer is the most prevalent cancer ve years after diagnosis, due to the improvement of screening and effective treatments [3,4]. Besides, the recent meta-analysis indicated the change in survival in metastatic breast cancer (MBC) with treatment advances [5]. However, the diagnosis and treatments of breast cancer are a painful and traumatic experience [6]. Moreover, the side effects resulting from invasive cancer treatments put the enormous emotional burden on affected women during treatment and/or remission periods [7,8]. Indeed, breast cancer patients experience continuous physical, emotional, and social changes as the disease progress [9]. However, little is known about the trajectory of the abovementioned experiences over time among MBC women. To understanding and managing of MBC as a chronic disease, Reed. et al introduced a ve trajectory model [10]. This longitudinal mixed-methods study, according to the general illness trajectory model [11], identi ed ve trajectory phases (pre trajectory, trajectory onset, living with progressive disease, downward phase, and dying phase) were experienced by MBC women [10].
Thinking in terms of these trajectories provides a broad timeframe and patterns of associated needs and challenges of the illness process. The understanding of illness trajectories can give rise to the better adjustment of the patient and their caregivers to illness and its demands. This insight helps them feel a sense of control and empowerment [12]. In other words, the knowledge of change is bound to be important for a better understanding of how MBC patients cope with this stressful encounter.
Previous studies pay attention to the various psychosocial trajectories of breast cancer, such as trajectories of psychological distress [7,13,14], psychosocial coping along disease trajectory [9], psychological and physical adjustment [15]

Purpose of the research question
Although the abovementioned studies provided information considering the changes of psychological characteristics in a different phase of breast cancer, there is no investigation to encompass the comprehensive range of MBC characteristics, including the physical, emotional, social, and spiritual aspects of illness trajectory. Therefore, the present study attempts to ll this gap by examining the trajectory of MBC in light of retrospective qualitative study. The current study aims to map MBC patients' psychosocial change along the illness trajectory via a narrative approach. Indeed, the nding of this investigation can help to the enhanced understanding of the dynamic process of adaptation to MBC.

Qualitative approach and research paradigm
To explore the women's experience of living with MBC, all participants were interviewed using a qualitative biographic narrative approach [19].
Reed and Corner illness trajectory of MBC utilized as a research paradigm. As noted earlier, these ve trajectory phases have been identi ed according to the Corbin and Strauss chronic illness trajectory framework [11]. All interviews were conducted by a clinical health psychologist (MM), using a structured interview based on the framework of MBC trajectory [10]. About the framework of a narrative interview, it is notable that the participant, rather than the interviewer determines the narrative form.

Data collection
Any interview includes ve opening questions, begins with a question about the breast cancer diagnosis 'tell me about the onset point of breast cancer diagnoses'. Subsequent questions include the incidence of metastasis, living with MBC, anticipatory of future, respectively. Finally, the last question includes the participants' point of view about death. All in-depth interviews were performed in the breast disease clinic of the breast cancer research center (BCRC), each lasted, on average, 60 min. For more accuracy, all conversations were recorded by audio recorders.
Medical evidence for MBC has been considered as inclusion criteria. Then, eligible patients have identi ed according to the demographic and medical information registered in the database of BCRC. Initially, 101 MBC patients meet medical inclusion criteria. 66 MBC patients were excluded from the study because of missing contact information. In the next step, invitation, and information about the research process presented to each of the eligible MBC patients (n = 69), through the phone conversation. Finally, by attainable sampling method, fteen MBC women represented their satisfaction for the study participation, and completed informed consent.
In terms of the con dentiality principle, all interviews were kept con dential and anonymized. Also, data protection was performed at all stages of the research process. Furthermore, we clari ed that the information of participants was unavailable for others.

Data analysis
All data collected via in-depth narrative interviews were triangulated to map in detail the illness trajectory of each MBC women. In other words, the Interviews were transcribed verbatim and analyzed in their entirety. Standards for Reporting Qualitative Research (SRQR) Checklist was used to improve the communication of research methods and ndings [20].
Ethics approval for this study received from the ethic committee of Academic Center for Education, Culture and Research (Ethic Code: IR.ACECR.BCRC.REC.1396.8).

Results
The mean age of the participants (n = 15) was 47.6 years (range = 33-80 years), most women were married (93.33%), and some of them currently working. The mean time since diagnosis, and the time since metastasis incidence was 55.06 months, and 25.21 months respectively. The time of metastasis of one participant was not assigned. The frequent metastatic organs were lung (n = 3), and brain (n = 3), followed by skin (n = 2) and liver (n = 2). Moreover, 5 participants reported two metastatic organ, such as lung & colon (n = 1), lung & brain (n = 1), lung & skin (n = 2), and bone & brain (n = 1). All participants' characteristics are presented in table 1.
Analysis of the participant's narratives revealed ve phases of MBC trajectory which includes 10 categories (each phase consisted of two categories). According to secondary coding, 21 subcategories were extracted from participants' narratives (Table 2). The majority of participants have mentioned stressful life events as the probable cause of their illness.
My mother died two months before my cancer diagnoses They postponed the medical procedures, due to the fear of cancer diagnosis and its treatment. In some cases, the participants represented an intensive anger feeling resulted from medical negligence, and malpractice, consequently give rise to delay in starting treatment. Notably, the denial of cancer diagnosis, crying were the frequent reactions to the breast cancer diagnosis. Moreover, some participants point out the concealment of a cancer diagnosis from others.

Physical and social reactions
The participants were designated to the experience of pain and deformity of the breast as a trigger for the medical attempt.
I refused to see a doctor, as long as the pain was endurable Moreover, some of them mentioned the reference to non-specialist persons rather than cancer specialists. There was no gap between the diagnosis and the time point of surgery. My doctor immediately gave me an appointment for breast surgery Moreover, they reported the emotional states such as hopefulness in treatment effectiveness which help them tolerance of side effect of cancer treatment.

Physical and social reactions
Some women reported side effects such as fatigue due to cancer treatment, particularly chemotherapy and radiotherapy.
Despite the abovementioned problems, family and friends play an important role in the acceleration of treatment attempts. They provided adequate social support in the treatment phase of the illness.

Positive experiences
The enhancement of perceived social support from family, as well as physician, was the prominent positive interpersonal feature of living with MBC. The majority of participants a rmed the supportive role of their family in the illness trajectory. For example: In the illness process, I become aware that my family loves me very much, I realize that I'm not alone The increased interest in outdoor activity was another offspring of living with MBS. Five participants state that such activities help them to cope with circumstances of living with progressive illness, and resulted in the capability feeling, rather than disability associated with the illness. An employee woman who had quit her job due to MBC was referred to the outdoors activities as an enjoyable activity: Another pessimistic prediction includes the fear of metastasis to other sites of the body. One of the participants remember the worse condition of a patient with various metastasis in the chemotherapy ward and said: I saw patients whose different organs of their body were affected; I'm afraid other parts of my body will be involved

Physical
It should be noted that the physical condition of patients has a direct effect on their opinion about the future. The severity of pain can give rise to a pessimistic perspective.
When I feel good, I think that the future is good; but when I am at the peak of pain, I cannot even think about two months later; I'm afraid I'll be disabled in the future

Financial
Another aspect of pessimistic prediction is related to nancial problems. The cost of treatment causes many nancial problems that affected the future itself. Moreover, there was an association between illness perception and patients' attitudes toward death. In some cases, they considered the illness as a pathway toward comfort in the afterlife, even so, the approximation to God.
If I die, I am happy because I am going to see God My place will be better there. There is better than this world. It is better than the worry and anxiety of this world. There is peace there 3 These patients attributed their fear of death to these worries.
What will happen to my child if I die?
Albeit, from a positive point of view, the illness can give rise to the reduction of fear of death.

Discussion
This study was performed to explore the illness trajectory of MBC women from breast cancer diagnosis to metastasis. Meanwhile, the perspective of patients toward the future has been evaluated through their narrative in the framework of a qualitative study.
There are several differences between the two phase of breast cancer diagnosis, and incidence of metastasis. Despite the feelings such as shock and denial in the diagnosis phase, the hope and energy are higher rather than the metastasis phase. It addresses the despairing nature of metastasis which resulted in the disappointment of MBC women.
An interesting nding is a variation in perceived social support particularly from the physician. Almost, the metastasis occurrence is accompanied by losing trust in the physician, such as away some of the patients in metastasis onset category, attributed the illness recurrence to the medical malpractice, and they start blaming the doctor. While, simultaneously with treatment resuming, they decide to trust their physician. At this time, they disclose the supportive role of the physician for facilitating the decision making about the future therapeutic attempts and encouraging them to remission. This nding suggests the educational and supportive program for improvement of the relationship between patient and physician, in a different phase of illness and treatment. Being aware of these trajectories may help clinicians plan care to meet their patient's multidimensional needs better, and help them to cope with their situation [12].
The diversity and complexity of the problems resulting from the disease and its treatments could affect the physical, emotional, and social domains of MBC patients' life [8].
According to the study nding, a frequent complaint of MBC especially in the metastasis phase was the physical and emotional pain caused by remembrance of chemotherapy and its side effect. This suffering in some cases can give rise to the avoidance from medical attempts, or treatment postpone. It can be attributed to recent ndings emphasizing the physical and cognitive dysfunction caused by chemotherapy which leading to increased psychological distress [21].
This study revealed that living with MBC as a progressive illness can consist of both positive and negative experiences at intrapersonal and extra personal levels. Positive experiences such as hardiness and resiliency have consisted of previous research and theoretical foundation which referred to the posttraumatic growth [22], and psychological hardiness theory [23]. These positive psychological changes occur as a result of the struggle with MBC as challenging life circumstances.
On the contrary, some of the adverse consequences of the MBC, such as isolation, rejection, hopelessness, and other experiences due to side effect of treatment (for instance, sexual, hot ashes, and body image problems), can consider as common negative experiences leading to the annoying memories, even after treatment complement. God leads to lower levels of breast cancer concerns but also more passive coping styles [24].
Similar to anticipatory narratives, the MBC patients' perspective about death, includes spiritual, as well as religious concepts in terms of revision from illness and attaining to long-time life. This matter is evident in their psychological reactions, especially avoidance from speaking about death, and bargaining with God for a lifetime.
As noted by Lam et al. distress trajectories over the rst 8 months post-operatively predicted psychosocial outcomes 6 years later [25]. Then, screening for distress at the initial phase of breast cancer may help to identify patients with more unmet needs, and higher use of maladaptive coping styles who are at risk of experiencing non-resilient trajectories for further management of these symptoms [26].
This study can be considered with several limitations. Some of the confounding demographic and medical variables such as the age of patients, time since diagnosis, time since metastasis occurrence, stage of illness, and physical condition and mental status of patients at the moment of the interview can be contributed to their narratives. All of the abovementioned factors can tarnish patient's narratives about past experiences, and/or affected their perspective about living with MBC and their overview about the future. Also, further information about the important others associated with patients, such as caregivers, family members, as well clinician and, medical professionals during illness trajectory, is required to organize the interventions tailored to their actual needs or aimed to prevent later di culties [27]. Finally, more research is needed to understand the heterogeneity of individual trajectories within these major patterns of variation [8].

Conclusion
As each phase presents a new set of challenges, the identi cation of the cognitive problem and emotional distress associated with each phase of illness trajectory such as hopelessness, avoidance, fear of death, and so on, is helpful to improve QOL of MBC women both in the short and long term. In sum, physical, social, psychological, and spiritual challenges of MBC patients are likely to vary according to the trajectory they are following [12]. Therefore, they should be monitored over time to detect and treat women with alarming levels on them [27].

Practice Implications
To move away from the predominant traditional approach towards a more comprehensive and bettertargeted service, an increased understanding of the complexities of the MBC trajectory is necessary. Table 1   Table 1 Participant's characteristics