Despite significant surgical and multimodality advances, esophageal cancer carries a relatively poor prognosis, with a five-year survival rate of approximately 20%. Diagnosis of esophageal cancer often occurs at more advanced stages of the disease [1
], and an esophagectomy, alone or in combination with chemotherapy or radiotherapy, is the mainstay of treatment. An esophagectomy is one of the most complex cancer surgical procedures, with an in-hospital mortality rate of up to 5% [2
] and a recovery period that may extend beyond one year [3
]. Patients commonly incur physical decrements such as muscle loss, food-related difficulties, and fatigue, during and in the aftermath of, treatment. These decrements, in turn, affect emotional wellbeing and health-related quality of life (HRQOL) [4
An esophageal cancer diagnosis signals the start of a difficult phase that incurs significant physiological, psychological, and social challenges, to include developing illness coherence, recognizing and accepting a changed self, moving away from self-blame, and regaining agency over day-to-day life [7
To date, relatively few studies have qualitatively explored the experiences of esophageal cancer survivors. Since diagnosis and treatment pose challenges to all domains of wellbeing [5
], supportive education and rehabilitative interventions must encompass physical, emotional, and social strategies to help survivors attain and maintain an acceptable quality of life.
This study aimed to examine patient experiences of esophageal cancer diagnosis, treatment, and recovery, with a view to informing the content of education and rehabilitative programs for esophageal cancer survivors in a specialist center.
2. Materials and Methods
Individuals who had undergone an esophagectomy with curative intent in the previous five years, and who were in remission, were eligible to take part. An invitation to participate in a focus group was issued to 20 esophageal cancer survivors engaged in research activities in the recruiting hospital [9
]. The written invitation outlining the purpose of the study was issued by a researcher known to potential participants. Those invited had two weeks to consider the invitation.
Sociodemographic data was recorded from participants and their available medical records, and wellbeing was recorded using the Perceived Wellbeing Questionnaire [11
], in advance of a focus group starting.
Interviews were facilitated by an occupational therapist experienced in conducting focus groups with persons who received a cancer diagnosis. The facilitators had significant experience in rehabilitation after a cancer diagnosis, both from a clinical and research perspective, and therefore were familiar with the nuances of treatment and recovery. Participants had little or no engagement with the facilitator prior to the focus group taking place. A semi-structured interview guide explored participant experiences of, and needs around, diagnosis, treatment, and recovery [12
]. Questions were broad, to encourage discussion, e.g., “What has been the biggest challenge for you since your diagnosis? How would you describe your confidence after your treatment? What are the facilitators/barriers to keeping up good (health) practices after surgery? Have you noticed any changes in your fitness/pain/fatigue since your surgery? How would you describe the role of family and supports throughout diagnosis and treatment, and the time since then?” Interviews took place in the recruiting hospital, and only focus group participants and the facilitator were present. Interviews were audiotaped and lasted an average of 46 min.
Interviews were transcribed verbatim and analyzed thematically [13
]. Four authors contributed to the analysis of transcripts. Each author followed a standardized process to analyze transcripts using nVivo 11 (QSR International, Doncaster, Australia), where: codes were systematically generated across the data set; codes were arranged into themes; coded extracts were re-checked to ensure they were congruent with the theme to which they had been assigned; and themes were reviewed to ensure they were clearly defined. A high level of agreement (97%) was apparent when coded transcripts were compared between authors. Any differences in how data were assigned to a theme were discussed and agreement was reached. Given the high rate of recurrence in esophageal cancer survivors, it was deemed inappropriate to return transcripts to participants for comment. The COREQ criteria [14
] ensured that the methodology and results were comprehensively presented.
This is the first Irish study to explore the perspectives of survivors of esophageal cancer about the period from diagnosis to recovery. It provides insights on the myriad psychosocial challenges experienced by individuals as they cope with being diagnosed with this cancer. The findings emphasize the distress that pervaded all stages of treatment, encompassing participants’ loss of confidence in the capacity of their body to carry out everyday tasks, grief at losing their “normal life”, and apprehension at having to build a “new normal” in the uncertain aftermath of treatment. In addition to their personal struggle with their diagnosis, participants had to cope with the attitudes of family and friends; attitudes which ranged from supportive, to well-meaning-but-undermining, to insensitive. However, for all the difficulties experienced, the importance of a positive outlook as a key coping mechanism was consistently iterated.
Participants described the adverse impact of their diagnosis on their emotional well-being. They described the fear and irritation they felt at having to cope with a cancer diagnosis; something that some had never considered a possibility for themselves. On top of managing their own reaction, there was the emotionally wearing task of coping with outrage, discomfort, and even avoidance, from family and friends when they were informed of the diagnosis. Research consistently reports that individuals with cancer and their families are unified by fear in the face of a life-threatening illness [15
] and the unknown [17
]. This fear was sometimes amplified when participants and families attempted to address the “unknown” by conducting Internet searches or speaking with others about the diagnosis. They subsequently became aware of the poor prognosis associated with this cancer [1
], although not always via health professionals. Since the prognosis is dependent on a range of factors [2
], health professionals should provide tailored information to patients and families on the diagnosis, to equip them with evidence-based information from the outset of their cancer experience.
To manage the news of diagnosis, participants described the value of coping strategies such as resilient thinking and talking with others, i.e., psychosocial strategies that are recommended by the wider literature [17
]. These strategies were also important once treatment was underway, but participants highlighted the need to be selective in terms of company kept during this time. For example, one participant described the value of actively limiting contact with specific individuals during treatment, in an effort to conserve her energy and protect her wellbeing. Conversely, another participant described feeling overwhelmed with multiple well-meaning visitors shortly after discharge. Social support independently predicts HRQOL [24
], making access to informed social support invaluable at a time when HRQOL is threatened [26
]. However, a discussion in advance of surgery on managing social support may be helpful, particularly if the discussion includes the primary caregiver, who can be advised on serving as a “gatekeeper” to the patient [17
]. When family members act as a buffer between a patient and visitors, this can help patients to better pace their adjustment to any physical and psychosocial challenges that accompany their esophagectomy [6
Participants experienced significant challenges readjusting to life after surgery. They described the trepidation they felt about this adjustment, which seemed to be at least partially related to a fear of cancer recurrence and loss of confidence in the ability of their body to function as expected. Fear of recurrence is common, where symptoms expected as consequences of an esophagectomy are mistakenly interpreted as signs that the disease has returned [16
]. For example, fatigue is a common and expected adverse consequence of treatment [12
], but participants sometimes anxiously interpreted it as a sign that their recovery was not progressing as it should. Even when fatigue was not associated with recurrence, it compounded the decreased confidence some participants had in the ability of their body to manage routine daily activities. The inability to carry out usual activities without a disproportionate sense of tiredness, or even to eat everyday meals without painful consequences, contributed to reduced self-esteem. Physical functioning is not observed to return to baseline in the aftermath of treatment for esophageal cancer [19
]. Such deficits in function are associated with a poorer sense of self-efficacy, as was evident here, where participants were consistently skeptical of their physical abilities in the aftermath of treatment. To help avert the dissatisfaction that can arise from a discrepancy between expectations and reality, it is important that patients and families are made aware of the physical challenges associated with treatment. However, it is also important that they are made aware that strategies exist to improve, maintain, or attenuate a decline in, physical function; strategies that may, in turn, reduce the emotional and social difficulties related to changes in physical function.
The diagnosis and treatment of, and recovery from, a type of cancer that is unfamiliar to many, may challenge a person’s social network to interact with them in an appropriate manner [6
]. In this study, the behaviors of others had potentially profound and lasting impacts on participant wellbeing. Just as the individual with cancer must be educated and enabled to cope with a cancer diagnosis and treatment, so too must the individual’s social network. In particular, the way in which a person’s needs change as they move from one phase of cancer to the next, must be recognized [12
]. For example, the type of support a person may require during treatment will differ to the support they need as they regain functional capacity after treatment [1
]. During treatment, intensive physical support may be required. However, support of this intensity may be inappropriate during recovery, since it can disempower individuals to regain their functional capacity, and in turn, impinge upon self-efficacy [12
]. Participants described situations in which families did not always recognize the need to lessen their physical support as the time from treatment lengthened; unfortunately, such behaviour tended to impede their recovery and undermined participants’ perceptions of their abilities. Therefore, for social support to be of greatest benefit, it must take the shape of suitably informed individuals who have the capacity to adapt to the changing needs of the patient over time [29
Although not specific to individuals with esophageal cancer, self-management support programs implemented by allied health professionals can significantly reduce anxiety, improve self-efficacy, and preserve exercise participation [32
]. Many of the needs of esophageal cancer survivors can be broadly categorized to reflect those of other cancer survivors [34
], particularly in terms of fatigue, coping strategies, and a need for adequately informed social support. However, the nuances of esophageal cancer, particularly those related to gastrointestinal health, require particular reassurance and attention, e.g., changes to pace, timing, and volume of meals, urgency of bowel movements, and managing the social implications of these challenges to food intake and digestion. In addition, as a poor prognosis cancer, the comparatively limited number of persons who develop esophageal cancer and survive beyond one year post-surgery, can result in an intensely isolated path to recovery, as opportunities to engage with others in similar situations is limited. Reflecting this, the participants in this study highlighted a lack of consistent and easily accessible professional and peer support and education during their recovery. Further research is needed in this area [36
], and given the traumatic experience of esophageal cancer [6
], research that quantifies the impact of equipping individuals with esophageal cancer, their families, and their social networks, with skills to manage cancer treatment and recovery, is worthy of consideration.
We acknowledge limitations to the study. Given the qualitative design, results are not representative; rather, they provide useful insights that can be difficult to present quantitatively [37
]. Length of time from surgery to participating in the study ranged from 8 to 62 months, so recall bias must be considered when interpreting findings. It must also be considered that participants had completed an exercise-based RCT [38
] and may represent a more motivated subgroup of individuals recovering from esophageal cancer.