Physician and cancer patient Fitzhugh Mullan is credited as being the first to use the term cancer "survivor" in a 1985 New England Journal of Medicine article, "Seasons of Survival: Reflections of a Physician with Cancer". The following year, the National Coalition for Cancer Survivorship (NCCS) extended that definition to include any patient who is alive who has ever been diagnosed with cancer. In a new article published in the Journal of Clinical Oncology, two oncologists argue that definition is outdated (2016;34: 3372-3374). "An additional gap in survivorship care and research remains unaddressed-identification of categories of cancer survivors on the basis of clinical and epidemiologic data to provide better tailored care to people who are now lumped together under the umbrella of cancer survivors," noted the paper's coauthors-Antonella Surbone, MD, PhD, FACP, Professor in the Division of Hematology and Medical Oncology at New York University Medical School; and Paolo Tralongo, MD, Chief of the Medical Oncology Division at RAO Umberto I Hospital.
1 What are the new categories of cancer survivors you propose?
SURBONE: "A.) Acute: Patients/survivors at first diagnosis or relapse, requiring acute intervention; B.) Chronic: Patients/survivors with cancer that slowly progresses or alternates phases of remission and relapse, often accompanied by acceptable quality of life; C.) Long-Term: Patients/survivors in clinical remission for long periods of time or for their entire life, remaining at risk for distant relapse or second tumors, and potentially carrying late treatment-related medical and psychosocial sequels; and D.) Cured: Patients/survivors, such as many patients with early stage (thyroid, cervical, testicular, or colon cancer) when their cancer-specific mortality and life expectancy after several years from diagnosis equals that of gender- and age-matched members of the general population.
"Such categorization, based on clinical, epidemiological, and risk-assessment data is not necessarily in antagonism with the inclusive definition of 'survivor' coined in 1985 by oncologist and patient Mullan to describe the multiple medical and psychosocial needs and concerns, as well as the shifts in interpersonal roles and dynamics, that accompany cancer patients from the time of diagnosis and later extended by the NCCS. Rather, it complements [the current definition] by allowing tailored survivorship care to be effectively and sensitively delivered to different survivors belonging to different categories by way of their actual disease and risk status."
2 Why is it so important to talk about renaming these categories now?
SURBONE: "A too broad and inclusive use of the term 'survivor' with no further categorization prevents us from tailoring survivorship care to the actual clinical situation of different survivors by grouping together a too-heterogeneous population of millions of people who have had a cancer diagnosis in their life. In the era of personalized, precision oncology, categorization provides support for risk-based care, which is increasingly possible due to the intense research novel risk assessment tools in many types of cancer.
"We propose a novel categorization of persons now broadly defined as 'cancer survivors' that can provide support to risk-based survivorship care, new clinical and organizational approaches, and improved follow-up and surveillance recommendations and guidelines."
TRALONGO: "The distinction that characterizes patients alive after a diagnosis of cancer is their heterogeneity of perspective and needs in relation to their clinical status. At the same time, this clinical heterogeneity corresponds to existential and experiential differences among survivors, which require new approaches to communication and education, to optimize both physical and psychosocial rehabilitation for each individual survivor.
"As different medical, rehabilitation, and psychosocial needs often remain unmet (particularly during long-term survivorship), the science and art of survivorship care requires a complex and articulated management, which is not helped-but rather hindered-by insisting on a generic definition of cancer 'survivors.'"
3 What would you want oncologists to know about these new categories and why they are needed?
SURBONE: "We wrote about something to which most practicing oncologists are already acquainted. They all apply some form of categorization to communicate effectively with their patients/survivors and their families, and to plan adequate follow-up, surveillance, and general health maintenance. What we did is break a taboo surrounding the term 'survivor' by making a concise case for the need to define and apply categories of cancer survivors based on clinical, epidemiological, and risk-assessment data.
"[These categories] allow us to provide better care to our patients/survivors as they actually go, not only through the different 'seasons of survival,' but [as they] are in different positions with respect to their disease status, risk of recurrence, late sequels, etc.
"Finding the right balance between making our patients/survivors aware of the implications of their category of cancer survivorship, through communication and clinical recommendations, and acknowledging the desire of many to feel cancer-free-or at least not over-medicalized-will remain a difficult task. Here the wisdom of practicing oncologists-who are skilled in the science, as well as in the human side of cancer care, and are aware of the importance of a good, ongoing relationship patient-doctor relationship-is key."