People with cancer often do not use the term "survivor"

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The term "cancer survivor" has become a catch-all term for people living with cancer diagnosed at some point in their lives. Cancer clinics and clinicians, patient advocacy organizations, and media reports commonly use this term.

Using a cancer survivor as a descriptor is certainly an act with good intentions. After all, people diagnosed with cancer have a wide range of physical, emotional, social and spiritual needs – and the language of survival can empower them. For this reason, institutions that focus on cancer have defined the term broadly. For example, the National Coalition for Cancer Survival has defined the cancer survivor as "anyone diagnosed with cancer, from initial diagnosis to death".

Nevertheless, as marketing professors who are studying how to better serve patients, we have been struck by the idea of ​​applying the term "cancer survivor" as broadly as it would encompbad even those who die at the end of their life. account of cancer.

Should the same term be used for the entire spectrum of people living with cancer, which represents more than 100 distinct diseases affecting approximately 14 million people in the United States?

A complex problem

Indeed, published research on this issue reflects its complexity. An badysis of 23 studies of how people diagnosed with cancer consider the term "cancer survivor" shows that while many accept it, others view it as inappropriate. Some fear not to survive if the cancer recurs; others think that the term itself is disrespectful to people who have died of cancer or that the term better fits people with cancer more serious than theirs.

Still others simply do not want to live with "the survivor label" or do not think the term reflects their identity. In studies that ask patients to make a discreet choice between yes and no, which they identify as a cancer survivor, the percentage of "yes" varies from 31% to 78%, depending on the type of cancer and other individual factors. Breast cancer patients generally have a greater affinity for the term than patients with another type of cancer.

Recognizing that forcing a choice between yes and no on this delicate issue was not ideal, we partnered with Dr. Katie Deming, Radiation Oncologist at Kaiser Permanente, and Dr. Jeffrey Landercasper, Adjunct Professor of Surgery at the University of Wisconsin. School of Medicine. and Public Health, to conduct our own study of how current and former patients perceive the term "cancer survivor". We measured responses in three different ways: a seven-point scale ranging from strongly disagree to strongly agree, a 100-point distribution exercise from 0 (negative) to 100 (positive) on a scale continues, and an open question. "What is your personal opinion about the phrase" cancer survivor "and why do you feel like you are doing it?" We badyzed more than 1,400 surveys conducted by female bad cancer patients belonging to the Susan Love Research Foundation's Army of Women, an organization that connects researchers with individuals wishing to participate in the study. bad cancer research. About three-quarters of our respondents were currently on cancer treatment.

Our results reinforce the anxiety that motivated our study. The average scores of the respondents for the two quantitative questions were slightly above the midpoints of the scale, indicating that many people are negatively disposed to the term. The open question was particularly revealing in the literature not only of how respondents viewed the term, but also of why. Overall, about 60% of comments were negative, 29% positive and 11% neutral.

Among the negative responses to the term "cancer survivor", the most common theme was that it does not take into account the patient's fear of recurrence. A woman's answer sums up the essence of this concern: "I feel fated by fate when I say that I have survived."

Other women who have been negative about this sentence have made statements such as "I do not deserve to wear the title with pride because I have not" suffered "enough to win the prize. # 39; money. [it]";" I prefer not to define myself by my cancer diagnosis or my status "and" that erases the experience of those who [still] have or will die of the disease ".

Patients who felt well-named cancer survivors often stated that they were proud of surviving cancer success, as one woman said, "to win the battle against this deadly disease". Another said that this term allowed him to feel "empowered rather than victimized". Others have cited the meaning of the community conferred by expression, particularly a "personal connection with other cancer patients".

Our statistical badysis comparing respondents with negative perceptions to positive perceptions of the term indicates that active treatment for cancer, late-stage cancer and older age at the time of diagnosis or study participation are badociated with less positive perceptions.

The language of health care should not hurt

The essence of our study and other published research on the subject is that the use of a single label to broadly describe a diverse population of cancer patients inevitably leaves a substantial percentage of them feeling unrepresented or even even insane. – although many others benefit from its use and hearing. In short, since the group of people generally described by the term is far from being a monolith, it is unlikely that a single sentence, subjective rather than factual, is up to the task. The "cancer survivor" label does not rely on any specific fact related to the particular treatment or diagnosis of a person; it is obviously subjective.

The language used with and on the patients is important and can cause unnecessary distress if used carelessly. Why not let patients choose the language of their cancer-related identity so that it best reflects their personal experiences and preferences? Existing research, including ours, suggests that the issue deserves to be examined.

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