Maurie Markman, MD
Editor-in-Chief of OncologyLive
Senior vice president for Clinical Affairs and National Director for Medical Oncology
Cancer Treatment Centers of America, Eastern Regional Medical Center
“You have cancer.” In the entire realm of clinical medicine, one would be challenged to find three more devastating words—particularly that one specific six-letter word—or to identify a more difficult discussion for a physician to have with a patient. In Illness as Metaphor
, a classic essay still relevant today, Susan Sontag describes the impact of the word cancer1
: “Putative notions of disease have a long history, and such notions are particularly active with cancer. There is the ‘fight’ or ‘crusade’ against cancer; cancer is the ‘killer’ disease; people who have cancer are ‘cancer victims.’ Ostensibly, the illness is the culprit. But it is also the cancer patient who is made culpable. Widely believed psychological theories of disease assign to the luckless ill the ultimate responsibility both for falling ill and for getting well. And conventions of treating cancer as no mere disease but a demonic enemy make cancer not just a lethal disease but a shameful one.”
The term is so freighted with emotion that a somewhat controversial suggestion recently was made to no longer label premalignant conditions such as ductal carcinoma in situ (DCIS) or high-grade prostatic intraepithelial neoplasia as “cancer,” at least in part because of the implications that this terrible word has for the patient being provided with this diagnosis.2
Indeed, researchers found that the terms used to describe the treatment choices for DCIS had a statistically significant impact on whether women without breast cancer who participated in a survey would choose surgery, medication, or surveillance if diagnosed with DCIS (Figure
Yet there are other terms that clinicians, in general, and those caring for patients with cancer, in particular, employ which have the potential to have a similar, although almost certainly unanticipated and surely unwanted impact, on the emotional well-being of patients. In an era in which patients with cancer and their families have access to so much information about their treatment options, it is time to put to rest terms that could cause confusion or promote fear. In particular, six such words should be excised from discussions with patients (Table
Describing Stages of Disease
Consider the word advanced, as in “advanced cancer.” The American Society of Clinical Oncology (ASCO) has elected to employ this term in its laudable effort to encourage open and honest discussions/communication between patients with cancer and their clinical teams when faced with progressive/refractory malignant disease. Such discussions would include the limited statistical likelihood that continued therapy would be able to achieve an objective response or (far more important) improvement in quality of life or prolongation of survival; the rational need based on individual family circumstances (eg, responsibility for the care of young children) to consider end-of-life issues; and a personal decision to discontinue antineoplastic therapy as one transitions to a specific focus on comfort/symptomatic measures.
Yet, the term advanced has long been used in oncology to describe the extent of the disease process at presentation (ie, stage) in patients with malignant disease. Thus, while a woman with newly diagnosed stage IV ovarian cancer would clearly have “advanced disease,” it would surely be inappropriate to inform a patient in this setting of the need to focus on end-of-life and comfort care matters when the anticipated major objective response rate to platinum-based chemotherapy would exceed 60%, the median survival in this setting would likely exceed 18 months, and five-year or greater survival is not an unreasonable hope for patients whose tumors are highly responsive to the initial chemotherapy. Similarly, although a newly diagnosed patient with advanced stage kidney cancer 15 years ago or a patient with advanced stage malignant melanoma five years ago could reasonably be considered “advanced” by the apparent ASCO definition of the term, one could make a very strong argument that such a distinction would be highly questionable today.
Labeling Possible Outcomes
From the perspective of many patients, three terms that likely are even more problematic than the word advanced when employed in the context of oncologic care are terminal or incurable (as in “the cancer is terminal or incurable”) and futile (as in “continued anticancer therapy is futile”).