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The conversation around defining survivorship is one with an extensive history rooted alongside the evolution of medicine, research, and culture. According to the American Society of Clinical Oncology (ASCO), over the past 30 or so years, major developments in cancer identification and treatment have contributed to the dramatic increase in cancer survival rates, with the number of cancer survivors estimated to reach 18.1 million in the United States by 2020. But what does this statistic mean when it says “cancer survivors?”
A Brief History of Definitions
These improvements in survival rates along with the founding of the National Coalition for Cancer Survivorship (NCCS) in 1986 have led to a change in the way survivorship is defined. Before the NCCS, “cancer survivor” had only a purely clinical, albeit more pessimistic definition:
Someone who had been free of any sign of life-threatening disease for at least five years.
Those who weren’t “cancer survivors” were often referred to as “cancer victims,” but, according to the National Cancer Institute, the NCCS sought to replace “victim” with “survivor,” and redefined the label to mean:
Any individual diagnosed with cancer [is a survivor], “from the time of its discovery and for the balance of life.
As Kirsten Bell and Svetlana Ristovski-Slijepcevic explain in their article Cancer Survivorship: Why Labels Matter, the NCCS founder, Fitzhugh Mullan, rejected the popular opinion that people diagnosed with cancer were either on a path to be cured, or they weren’t. Instead, he believed there was only one path — that of survival — for those with a cancer diagnosis, a path that he divided into three parts known as acute, extended, and permanent survival. Founded in 1996, the Office of Cancer Survivorship of the National Cancer Institute expanded the NCCS definition to include:
Family, friends, and caregivers affected by a diagnosis.
Defining Survivorship Today
The NCCS definition, however, isn’t the only relatively new way of thinking about survivorship. As Bell et al. note, the concept has become wrought with debate surrounding what it suggests or implies about an individual’s personal experience of having cancer. It also calls into question the issues individuals have to deal with after “successful” treatment, and how many of those who have had cancer remain feeling somewhere in between those who are well and those who are sick.
Further complicating the conversation is the fact that there is also a difference between the terms cancer “survivor” and “survivorship,” where survivorship technically denotes the specific phase between primary treatment and cancer recurrence or death. The Office of Cancer Survivorship of the NCI calls attention to this difference, focusing its efforts on the survivorship phase due to the perceived neglect of the concept.
Then, there are others who feel the term survivor is an inadequate concept, failing to focus on quality of life, or the notion of thriving. As a result, it’s not uncommon to hear the term “thrivers.”
At the same time, there are individuals who reject certain connotations the term evokes, as if it is a badge of honor or something that is earned after a well-fought fight, reasoning that those whose lives are or were claimed by the disease did not fight any less hard or were any less deserving of the label.
Today, the term survivor is generally understood to define those who have successfully completed treatment and are determined to be cancer-free, while the survivorship phase is made increasingly ambiguous. This is due to the fact that a number of cancer survivors continue to take preventative treatment measures and medications throughout the duration of their cancer-free life, while others are able to control and continue living with an incurable disease.
These attempts at defining, re-defining, and undefining the terms cancer survivor and the survivorship phase arguably shed light on a deep-rooted desire to include an unlimited amount of individual and highly personal experiences under one label. People seek to understand what feels like a new identity following a cancer diagnosis, and as humans, the desire to define is natural, as labels often provide a sense of control, acceptance, familiarity, and comfort.
Ultimately, it’s clear that rather than defining something, the conversation around cancer survivors is aiming to do something much bigger and more important for the cancer community.
What Defining Can Do
The debate around defining survivorship has inspired patients, oncologists, a field of research, and much more when it comes to understanding cancer. For those who identify as survivors, research suggests that doing so can cause patients to take a more active role in their experience, thus easing anxiety, depression, and low self-esteem. For those who reject the term, it feels limiting, but again gets them to actively think and talk about their experience, allowing others to learn and further their understanding.
In the end, whether someone identifies themselves as a cancer survivor, a thriver, a warrior, a victim, or other term — or nothing at all — it’s a personal choice, based on a very personal experience. It’s okay (and logical) to not have a one-size-fits-all tag, when cancer and any other life-hindering disease is anything but. What’s most important is continuing the conversation around the cancer experience, in all its forms, in order to better understand disease and learn how to take better care of patients, both in the short and long-term.
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