Apr 26, 2017
By Virginia Anderson, Managing Editor
Care for people who have survived or are living with cancer should acknowledge the heterogeneity of their needs and experiences, and should reflect the same level of personalization that is now guiding active cancer therapy. At a time when more people are surviving cancer than ever before, new paradigms of care and perhaps even new definitions of survivorship are needed, according to a paper published in the Journal of Clinical Oncology.
Coauthors Antonella Surbone, MD, PhD, FACP, and Paolo Tralongo, MD, developed their proposed categorization structure based on their experiences “practicing survivorship care in different cultural contexts, where we became interested in the different perceptions of the term ‘cancer survivor,’ as well as the different definitions in the literature from different countries,” they explained. “Our aim in providing a possible categorization of cancer survivors is twofold: first, to overcome the limits of the dominant, excessively inclusive, definition of ‘cancer survivor’ widely adopted in the United States and other countries; second, to pave the way for the development of tailored survivorship care for each patient/survivor.”
There are several existing definitions of cancer survivorship from a variety of sources. Which do you consider most accurate, and why has it been so challenging to create a unified definition?
AS and PT: We appreciate the definition of survivor coined by oncologist and patient Fitzhugh Mullan, MD, in 1985 to describe the multiple medical and psychosocial needs and concerns, as well as the shifts in interpersonal roles and dynamics, that accompany patients with cancer from the time of diagnosis to the end of life, going through different seasons of survival. This definition captures the existential condition of any person whose life is touched by a cancer diagnosis, and unifies the suffering and hardship experienced by all patients, regardless of their tumor, stage, and outcome. The National Coalition for Cancer Survivorship definition, which embraces Dr. Mullan’s and extends it to family members, is even more inclusive and reflects the reality of cancer as a family disease, in which interpersonal roles and dynamics are inevitably altered by cancer.
Furthermore, the definition of survivor in the literature varies according to individual, cultural, and functional factors.
By individual, we refer to the many survivors worldwide who challenge the label of “cancer survivor” for different reasons. For many, the term doesn’t capture the uniqueness of their individual experience, which can range from living cancer-free for the remainder of one’s life to living with active cancer controlled by different treatments to living in a chronic state of disease with intermittent periods of active and silent disease on and off treatment. Some also report disliking the emphasis on triumphing over the disease, as if in a war, and being uncomfortable with the potential negative implications for those patients who suffer and die from their cancer.
By cultural, we refer to the different meanings and perceptions of the term survivor in different contexts: in the United States, the word survivor has a positive connotation related to a person’s resilience, while in European and other contexts the same word is perceived as a negative label on persons who feel they are being defined by their cancer history. They strongly believe that the cancer experience, no matter how traumatic, does not change their identity.
By functional, we refer to the fact that there is a need to define cancer survivors for the practical purpose of designing and implementing appropriate models of care or follow-up guidelines.
Our proposed categorization, based on clinical, epidemiologic, and risk-assessment data, is not antagonistic to existing inclusive definitions of cancer survivorship. Rather, it may complement them by allowing tailored survivorship care to be delivered effectively and sensitively to different individuals belonging to different categories by way of an evaluation of their actual disease and risk status, which is now increasingly possible.
Your schema proposes four categories of survivors: acute, chronic, long-term, and cured. How are these groups defined?
AS and PT: Acute patients/survivors are at first diagnosis or relapse, requiring acute intervention. Chronic patients/survivors have a cancer that slowly progresses or alternates phases of remission and relapse, often accompanied by acceptable quality of life. Long-term patients/survivors are in clinical remission for long periods or for their entire life; they often resume their normal lives, but remain at risk for distant relapse or second tumors, and may experience late treatment-related medical and psychosocial effects. Cured patients/survivors are those whose cancer-specific mortality and life expectancy several years from diagnosis equal that of gender- and age-matched members of the general population (differing conceptually from “clinical cure” for individual patients). This group would include patients with early-stage thyroid, cervix, testicular, or colon cancers.
“Cured” can be a polarizing term in oncology. Why did you decide to include it among your categories?
AS and PT: The use of the word cured is now being debated in view of the increasing survival rates for some cancers and the development of survivorship care as an essential component of oncology. Cure is a reasonable assumption when survival curves tend to level off.
The appropriateness of the word relates not only to scientific evidence, but also to individual and cultural differences in patients and their perception of related terms, such as chronic and survivor. When appropriate, we believe the word cured can be used in the clinical setting during communication with patients and their families, but should always be accompanied by counseling about prevention, screening, and maintenance of good general health for all.
Finally, the use of the word cured in certain social and cultural contexts could facilitate the return of individual patients to their relational and professional life after cancer diagnosis and treatment, by reducing the risk of employer and insurance discrimination, as well as more subtle forms of social discrimination.
How else might cancer survivors benefit from a more precise definition of their survivorship?
AS and PT: First, categorization allows us to study, develop, and implement tailored approaches to follow-up care and surveillance. Survivors belonging to different categories cannot be treated and followed alike: high-risk patients/
survivors require more frequent and intensive follow-up than lower-risk patients/survivors (while always trying to avoid, as much as possible, the medicalization of people’s lives). Survivorship guidelines should be tailored to each patient’s survival category and personal clinical history, including family history, genetic mutations, environmental exposures, and other risk factors, and familial and sociocultural context and resources.
Second, survivorship and long-term care could be provided in different clinical settings or structures according to specific categories, reducing patients’ exposure to the psychological trauma that may occur, for example, when cured or long-term survivors are followed in the same clinical setting where they had received acute care.
Third, proper categorization of survivors, as well as differentiation of dedicated facilities and modalities of survivorship care delivery, may facilitate individual patients’ adherence to clinicians’ proposed surveillance and follow-up, including measures to foster good general health.
Finally, categorization may contribute to reducing the stigma of the disease that still persists in many cultures and countries, by setting clear standards for the necessary survivorship care of each patient in a perspective that is similar to that of other major chronic diseases, such as cardiovascular ones, where the stigma is almost non-existent.
All of these beneficial repercussions of a proper catgorization of cancer survivors would contribute to demystifying cancer, with the result of helping our patients and their families not only medically but also psychologically.