My interest in cancer survivorship stems from academic and personal experiences. My first step in this direction began in my undergraduate coursework: I took a biology of cancer course and learned about the pathogenesis of some syndromes associated with AYA cancer, such as Lynch and Li Fraumeni syndrome. Although this course primarily focused on biological aspects of cancer, we also discussed genetic counseling and psychological implications of genetic mutation results associated with the syndrome to individuals and families. I furthered my education in graduate school by taking psycho-oncology graduate courses, which highlighted the wide-ranging psychological implications of cancer survivorship that negatively impact mental health and physical health. My educational experiences further clarified and solidified my interest in contributing to the cancer survivorship community, though I was still searching for how exactly I might accomplish that mission.
I first started working with breast cancer survivors in 2015 as a graduate research assistant. I worked on two research studies, during which I administered surveys and behavioral tasks, and conducted psychiatric diagnostic interviews. During these experiences, survivors shared their current and past mental health symptoms with me, and told of how these symptoms led to impairments in their overall quality of life as they learned to cope with their diagnosis and treatment. These experiences piqued my interest in a research career with cancer survivors. Specifically, I became very interested in fear of cancer recurrence (FCR) following remission. FCR is fear of cancer returning or progressing in the same, or different, part of the body. I recognized the expression of FCR by many of the research participants I worked with, and, based on so many of their stories, began to see such fear as a potential barrier to the pursuit of meaningful progress in life following successful treatment for cancer.
To date, research suggests 73% of all cancer survivors experience FCR, and that younger age when receiving a cancer diagnosis is related to higher FCR. Perhaps more concerning than just the presence of FCR is the detrimental impact it can have across survivors’ lives. For example, high levels of FCR appear associated with high emotional distress such as anxiety and depression, as well as physical symptoms such as pain and fatigue. High FCR also seems to be related to low positive health behaviors, including smoking, low physical activity, and alcohol consumption, in addition to overall low quality of life. Thus, both short- and long-term well-being can be affected by FCR.
Though the AYA survivor community appears to be at especially high risk for experiencing clinically high FCR levels that can lead to impairment of mental and physical health, it is important to note that such outcomes are not guaranteed. My aunt is an ovarian cancer survivor who had one of her ovaries removed. Though I was unaware of this fact when I was a child, I remember my family members were concerned about whether my aunt would have future issues with fertility following treatment. Years later, when I learned of her cancer survivorship, I finally understood how these concerns of future fertility and other health related issues related to the cancer diagnosis and treatment influenced her well-being. In our discussions, my aunt told of the emotional and physical toll her diagnosis took on her, which has always led me to marvel at her steadfast pursuits toward personal development in roles important to her, including a loving wife, mother, and accomplished music professor. Indeed, she has been, and continues to be, a source of personal inspiration as I have moved towards building a career aimed at improving the lives of cancer survivors.
My aunt once told me of her own FCR, which was particularly strong early on in her remission. Yet, she maintained strength to follow her passions despite these concerns. I am convinced that every survivor can do the same, which is why I am building a research program that aims to identify factors that decrease the probability of experiencing FCR, as well as ways of limiting impairment of overall health if and when one experiences FCR. I am especially interested in how physical and emotional pain that often follows cancer treatment may predict the onset of FCR. Additionally, I am curious how newer acceptance- and mindfulness-based psychological therapies may help survivors continue to pursue meaningful activities in daily life even when experiencing unwanted thoughts and emotions, such as FCR.
I am very appreciative to the AYA cancer community for their willingness to participate in my research and this growing field of psycho-oncology. I look forward to continuing to learn from, and work with, AYA cancer survivors in both research and clinical settings long into the future.
By Jennifer Kuo