Words matter: The “Cancer Survivor” Story
The traditional medical definition of cancer survivor was someone who had lived at least five years past diagnosis. Over the years, different organizations have defined survivor differently. Nowadays, we use the term cancer survivor to refer to anyone living with cancer after treatment. But do people who live with cancer actually like that term? And does it even matter? Before we get to those answers, it does not hurt to have some context of its origin – where does the term cancer survivor come from?
We would have to go back to the mid 1980’s. Until then, people mostly used the terms cancer victim and cancer patient. It was an American doctor, Fitzhugh Mullan, who first used cancer survivor in a manner other than its distinct medical definition in a New England Journal of Medicine article. Dr. Mullan, afflicted with cancer himself, reflected on his own cancer experience and identified three stages of cancer survivorship (acute, extended and permanent). Not long after, Dr. Mullan would co-found the National Coalition for Cancer Survivorship (NCCS) [https://www.canceradvocacy.org/]. They focused on advocacy of cancer survivorship issues and contributed significantly to the change of “victim” to “survivor” not only in the medical community as well as in society. The main reason being that survivor is a positive word that evokes a greater sense of empowerment, while the word victim was associated with passivity, and continued vulnerability.
According to research, the term survivor is usually preferred among people previously diagnosed with cancer. Patient and victim are the least preferred terms. The reasons for the preference of survivor could be explained by its positive connotations as mentioned above.
For others, the adoption of the survivor label is not an ideal one. Some people cited they feel unworthy of the label. They didn’t “have it as bad as others” or “it feels too heroic”. The implication that people who died from cancer may not have “fought hard enough”. Others don’t want the disease to define who they are as people. People also feel as though it is inappropriate given that their cancer can come back.
Furthermore, an interesting aspect of this discussion is the associations with mental health. Studies have found that those who identify as survivors have greater psychological well-being, are more engaged in cancer-related activities (events, charity, etc.), more willing to talk about their experience and the value of screening and prevention. They also have greater self-esteem, are less anxious and depressed compared to those who identify themselves as victims or patients.
Ultimately, whatever the preference in language, the important issue is that people should be paying attention to the needs and well-being of people living with cancer. This was the original goal of the NCCS, to use a common positive term to galvanize people living through cancer. While we are typically flooded with flashier news about cancer discoveries and new expensive treatments, we tend to forget about other basic needs of cancer survivors. Cancer survivors can face many health issues related to treatment, and encounter psychological, financial and social difficulties that persist even if they are cured of their cancer.
Researchers from McGill University, such as Dr. Christine Maheu, Dr. Nancy Mayo and Dr. Genevieve Chaput, are all involved in different facets of survivorship research. Dr. Maheu focuses on creating ways to help patients deal with the fear of cancer recurrence. Dr. Mayo has conducted research on cancer rehabilitation and Dr. Chaput has focused on educating family doctors about cancer survivorship issues. Although long neglected in medical research, research and awareness of survivorship issues has increased today. As more cancer survivorship research gets done, we will gain a greater understanding of the ways in which cancer survivors can live better lives even after diagnosis and treatment.