Breast cancer survivors’ recollection of their illness and therapy seven years after enrolment into a randomised controlled clinical trial

Abstract

BackgroundLittle is known about the subjective experience of breast cancer survivors after primary treatment. However, these experiences are important because they shape their communication about their illness in everyday life, usage and acceptance of healthcare, and expectations of new generations of patients. The present study investigated this topic by combining qualitative and quantitative methods.MethodsBreast cancer survivors in Bavaria, Germany were mailed a questionnaire up to seven years after enrolment into a randomised controlled clinical trial and start of their therapy. This enquired about their worst experiences during the breast cancer episode, positive aspects of the illness and any advice they would give to newly diagnosed patients. A category system for themes was systematically created and answers were categorised by two independent raters. Frequencies of key categories were then quantitatively analysed using descriptive statistics. In addition, local treating physicians gave their opinion on the response categories chosen by their patients.Results133 (80 %) of 166 eligible patients who survived up to seven years returned the questionnaire. The most prominent worst experience reported by survivors was psychological distress (i.e. anxiety, uncertainty; prevalence 38 %) followed by chemotherapy (25 %), and cancer diagnosis (18 %). Positive aspects of the illness were reported by 48 % with the most frequent including change in life priorities (50 %) and social support (22 %). The most frequent advice survivors gave was fighting spirit (i.e. think positive, never give up; prevalence 42 %). Overall, physicians’ estimates of the frequency of these responses corresponded well with survivors’ answers.ConclusionsAlthough physicians’ understanding of breast cancer patients was good, psychological distress and chemotherapy-related side effects were remembered as particularly burdensome by a substantial part of survivors. On the one hand, patients’ quality of life needs to be assessed repeatedly during medical follow-up to identify such specific complaints also including specific recommendations to the physician for targeted psychosocial and medical support. On the other hand the advices and positive aspects of the disease, reported by the survivors, can be used to promote positive ways of coping with the illness.

Associations Between Breast Cancer Survivorship and Adverse Mental Health Outcomes: A Systematic Review

“…Clinically relevant symptoms of anxiety and stress-related/adjustment disorders are common shortly after diagnosis ( 94 ), which is an expected response to a stressor that may be perceived as life-threatening and considering the uncertainty about the future that women may feel at this point ( 95 ). Declining trajectories of anxiety suggest that most women adjust to the diagnosis over time ( 96 ), but clinically relevant symptoms may persist in subgroups of women.…”

An international review and meta-analysis of prehabilitation compared to usual care for cancer patients

“…Although treatments are becoming more effective, resulting in decreased mortality from cancer, cancer and cancer treatment remain challenging for patients and their families. Recently diagnosed cancer patients experience a range of emotional responses and uncertainty about what to expect from treatment [2,3] and are at risk of developing physical, psychological and social 'late consequences' as a result of cancer and its treatment [4]. These changes have a detrimental effect on patients' lives in domains such as returning to work, Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11764-017-0645-9) contains supplementary material, which is available to authorized users.…”

The importance of cancer patients' functional recollections to explore the acceptability of an isometric‐resistance exercise intervention: A qualitative study

“…Recent emphases on patient recollections show great utility for planning and undertaking clinical trials. 16,17 The work by Lindberg et al 16,17 on breast cancer survivors' recollections of their illness and therapy indicate how understanding subjective experiences and recollections need to be considered in patient care, as former patients shape communication about an illness and about the acceptance of health care interventions. We have used a similar approach drawing on the recollections and memories of abdominal cancer survivors to remember their past treatment experiences to explore the acceptability of an isometric-resistance intervention.…”

“…We have used a similar approach drawing on the recollections and memories of abdominal cancer survivors to remember their past treatment experiences to explore the acceptability of an isometric-resistance intervention. 16,17 2 | METHODS…”