I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.
But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.
So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol. 2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.
Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”
The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…
- acute cancer (for people in treatment)
- cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
- chronic cancer (for people with advanced cancer that alternates remissions and relapses)
- chronic cancer, active phase
I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology.
The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.
“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.
(As terminology. The disease itself is one of the worst things that has ever happened to me.)