After Cancer: Debate About Terminology Beyond Treatment

Kate Johnson

May 23, 2013

The debate over labels has heated up again when it comes to describing cancer patients and their experience through and beyond the disease. Should they be described generically as "living with cancer" or as "cancer survivors"? Or should there be more of a distinction made, between for instance, someone who has "acute cancer," "cured cancer," and "chronic cancer," as a group of Italian researchers suggest?

"Until we have resolved this underlying issue of how to conceptualize cancer, then all the new labels in the world will not move us beyond the present situation, in which terminology serves to potentially alienate those so labeled and inadequately captures (or actively disguises key features of) the experience of life with and beyond cancer," write Kirsten Bell and Svetlana Ristovski-Slijepcevic (published online ahead of print on May 20 in the Journal of Clinical Oncology).

The authors, social scientists from the University of British Columbia in Vancouver, Canada, were replying to a comment about their article "Cancer Survivorship: Why Labels Matter" (J Clin Oncol. 2013;31:409-411), in which they explain the debate around terminology and call for "a better framework for conceptualizing diseases such as cancer."

"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.

In response to the Canadians' comments, Italian author Paolo Tralongo and colleagues agree that finding an appropriate term "is not merely a matter of semantics": "[T]he choice of the right words, applicable in both scientific and human terms in relation to the presence or absence of disease, can help patients cope," they write.

While Tralongo and colleagues acknowledge that "all patients who have been diagnosed with cancer are obviously patients with cancer," they suggest separate terms to help distinguish "patients with acute cancer" (those in treatment) from "patients with cured cancer" (those "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").

Additionally, they suggest patients with "chronic cancer" could be considered those with advanced cancer or cancers that go through alternating remissions and relapses, while those in relapse could be referred to as having "chronic cancer in active phase."

The main problem with this classification concerns who gets to be called a patient with cured cancer, reply Bell and Ristovski-Slijepcevic. The Italian researchers leave "a pretty sizeable gap between patients with acute and cured cancers," they say, which others have suggested terms for.

This "ambiguous space" has been called the "remission society" by Arthur Frank (At the Will of the Body: Reflections on Illness. Boston: Houghton Mifflin; 1991) and "living in prognosis" by Sarah Lochlann Jain, they note.

While the term "cancer survivor" is generally attributed to Fitzhugh Mullan, MD, a cancer survivor himself (N Engl J Med. 1985;313:270-273), further distinction has been drawn between the terms "survivor and survivorship," they add.

Dr. Mullan is founding president of the National Coalition for Cancer Survivorship (NCCS), which defines survivor as "from the time of diagnosis and for the balance of life."

The NCCS has expanded this definition to include family, friends, and caregivers, and Dr. Mullan's expanded definition has also become the National Cancer Institute's definition.

But this definition is not accepted by everyone, note Bell and Ristovski-Slijepcevic.

"Cancer is actually a collection of more than 100 distinct diseases with radically different effects, treatments, and outcomes. The concept of the cancer survivor elides such differences, asserting a common ground between people that supersedes their type of malignancy (and treatments and likelihood of survival), along with other forms of difference, such as those based on sex, age, and ethnicity, which are notably absent in most discussions of cancer survivorship," they write.

Additionally, some people object to the term "survivor" because of its close association with the Holocaust or other traumas, such as rape. "It is debatable whether all people who experience cancer find it traumatizing — or traumatizing in the same way," they note.

Still others "dislike the emphasis on the mere existence of life that the term implies, which does not entail an explicit focus on quality of life."

For now, as they note in their original article, the term "cancer survivor" is currently popularly understood as someone who "successfully completes treatment and has been labeled cancer free."

"The best present definitional issues around what to label those who have lived through cancer thus speak to larger inadequacies in our framework for conceptualizing this collection of diseases," Bell and Ristovski-Slijepcevic conclude.

The authors have disclosed no relevant financial relationships.

J Clin Oncol. Published online May 20, 2013. Full text


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