Abstract
This study explored breast cancer survivors’ perspectives regarding their experiences of the survivorship continuum from diagnosis through 30 months post-treatment. The sample included women (N = 379) with newly-diagnosed breast cancer undergoing treatment at a Midwestern university-affiliated cancer center. Semi-structured interviews were conducted using the Lymphedema and Breast Cancer Questionnaire at time of diagnosis, post-operatively, quarterly during the first year, and then semi-annually thereafter through 30 months post-treatment. A mixed-methodology was used to analyze participants’ comments. Themes central to long-term survivorship experiences included social support, positive worldviews, breast cancer and lymphedema health literacy, religious/spiritual beliefs, self-empowerment, and recovery expectations. These themes were consistent with a psychoneuroimmunological model of health in which psychosocial variables mediate stress and influence health outcomes. Qualitative data showed that social support and positive worldviews were the two themes with the most significant impact on long-term breast cancer survivorship experiences. Survivors expressed a need to advance their health care literacy in order to share ownership of breast cancer and lymphedema treatment decisions. Since breast cancer is an immune-mediated disease, long-term survivorship planning should address psychosocial factors that influence the long-term psychological distress associated with immune dysfunction.
Highlights
Breast cancer affects one in eight American women and is the second most common form of cancer among women worldwide
This study focused on a secondary aim of the parent study, which was to examine qualitative data collected from breast cancer survivor participants in order to uncover potentially new insights from survivors who were navigating an extended survivorship continuum
20% of survivor participants spontaneously commented that they took the initiative to do their own research regarding diagnostic testing and treatment options. These survivors conveyed a sense of responsibility for sorting through a variety of information sources beyond the information provided by health professionals as a means to acquiring ownership of treatment decision-making. These findings provide insight regarding the importance of promoting breast cancer and lymphedema health literacy and the resulting implications this has for self-empowerment
Summary
Breast cancer affects one in eight American women and is the second most common form of cancer among women worldwide. In the United States (U.S.), the population of long-term breast cancer survivors continues to grow with an estimated 2.9 million survivors. The relative five-year survival rate is defined as a cancer survivors’ chance of survival (excluding all other causes of death than cancer) over a five-year period, compared to that of an average person (same age and same sex) [1,2,3]. Increased breast cancer survivorship rates have been attributed to improvement in detection methods, treatments, and supportive care measures [3]. A limited understanding exists regarding the experiences long-term survivors face, as longitudinal studies exploring this phenomenon have been few. The purpose of this paper is to disseminate findings from our 30-month study in which breast cancer survivors were interviewed regarding their perspectives of breast cancer survivorship and lymphedema
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