Who is a cancer survivor? A brief overview of this controversial term
Chiara Marzorati, Foundations of the Life Sciences Bioethics and Cognitive Sciences, European School of Molecular Medicine (SEMM), European Institute of Oncology, Via Adamello 16, 20139, Milan, Italy.
Gabriella Pravettoni, Department of Oncology and Hemato-oncology, University of Milan, Italy & Applied Research Unit for Cognitive and Psychological Science, Milan Italy.
Who is a “cancer survivor”? Thirty years are passed from the first use of this term in clinical oncology, but it still lacks unanimous definition, even if it is commonly used by different people, clinical institutions, academic bodies, and political organizations. Today the definition of “cancer survivor” is the focus of numerous studies and behind a label there’s a lot of questions and studies to define patients who have been diagnosed with cancer and who are still alive. Our aim is to give an overview concerning this definition and to determine the contexts in which the term has been used. Both the care providers and patients do not have a shared definition because everyone gives a definition based on personal life experience. Consequently, the definition varies among countries and in each of them there are people who prefer to split the fight against cancer in different periods, and who, instead, see illness experience as a continuous process.
Both in the United State and in Europe the last 30 years have witnessed a growth of new cancer diagnoses due to two complementary phenomena. The first is the improvement of early detection and treatment of disease: primary prevention reduces important risk factors with the promotion of healthy lifestyles. The second is the aging of the population. The consequence is that by the year 2020, two thirds of all cancer survivors will be aged ≥ 65 years. This growth in survival rates and an increased attention paid to the patient’s experience have led to a shift from defining cancer patients as victims to survivors. In fact, when cancer was considered incurable, the term “survivor” was used to describe family members who survived the loss of a loved one to cancer. Then, in 1980 the term was associated directly to the patient and the survival acquired a double acceptation: a biomedical meaning in contrast with an experience that includes psychological aspects in addition to the medical ones. Referring to the first, survivorship refers to a period after therapy ends or after 2, 3, 5 or 10 years after diagnosis without recurrence. The term “cancer survivor” begins to be used in clinical setting by Mullan, a physician who reported his illness experience as “to pass through the seasons of survival”. In 1985, Mullan deepened this concept and described three phases of cancer survivorship: the period after diagnosis and during primary treatments is defined “acute survivorship” and it’s the time where there could be an existential crisis. The difficult time when patients are focused on dealing with the physical and psychological consequences after completion of treatment is called “extended survivorship”: individuals may experience other concerns like their health or the quality of received care. Finally, the “permanent survivorship” characterizes the period when patients are living with cancer as a chronic disease or when individuals are in remission thanks to ongoing treatment. This definition underlies that there are different phases of the disease. Each of these has specific cures and specific emotion to cope: the survivorship experience is the trait d’union among them.
Today, the most widely used definition sees cancer survivor as a person “from the moment of diagnosis and for the balance of his or her life, regardless of the ultimate cause of death”. This perspective aims to recognize the person and not only the patient, the needs and not only the treatments. This definition highlights patient’s psychological and legal needs, as well as medical ones, to receive care from the beginning. When physical, psychological, social and spiritual health of patients are dealt with in a constructive manner, cancer survivorship is seen as a continuum that begins with a state of illness and goes to a state of health.
Chiara Marzorati 1 and Gabriella Pravettoni 2
1Foundations of the Life Sciences Bioethics and Cognitive Sciences
European School of Molecular Medicine (SEMM), European Institute of Oncology
2Department of Oncology and Hemato-oncology, University of Milan
Italy & Applied Research Unit for Cognitive and Psychological Science
Who Is a Cancer Survivor? A Systematic Review of Published Definitions.
Marzorati C, Riva S, Pravettoni G.
J Cancer Educ. 2016 Feb 8