Aug 15, 2013
“‘Cancer’ is a terrifying word for people. It doesn’t matter what the doctor says next, even if it’s ‘You’re going to be fine,’” explained Diane Blum, Chief Executive Officer for the Lymphoma Research Foundation and former Cancer.Net Editor-in-Chief. “I’ve had patients tell me, ‘As soon as I heard the word ‘cancer,’ I thought it was all over.’”
But what if the oncology community changed the nomenclature? What if instead of labeling slow-growing lesions, such as ductal carcinoma in situ (DCIS), as “cancer,” oncologists called it an “indolent lesion of epithelial origin”? Would that term alter patients' emotional response and what treatment, if any, patients pursued?
Could changing the conversation surrounding cancer help mitigate overdiagnosis and overtreatment?
The authors of a recent Journal of the American Medical Association (JAMA) article seem to think so. In “Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement,” the authors list five recommendations that may improve cancer screening programs and thus reduce overdiagnosis and overtreatment. Among them are “change cancer terminology based on companion diagnostics,” which states:
“Use of the term ‘cancer’ should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated. There are two opportunities for change. First, premalignant conditions (e.g., ductal carcinoma in situ or high-grade prostatic intraepithelial neoplasia) should not be labeled as cancers or neoplasia, nor should the word ‘cancer’ be in the name. Another step is to reclassify such cancers as IDLE (indolent lesions of epithelial origin) conditions.”
Intense debate
The suggestion to reclassify these conditions has spawned an intense debate within the popular and medical media and among oncologists themselves. ABC News, for example, live blogged a Twitter chat on “The New Rules of Cancer.” The New York Times included an article on the JAMA paper on its “Well” blog, and NPR’s “Shots” blog interviewed Otis Brawley, MD, Chief Medical Officer of the American Cancer Society, on his thoughts on the JAMA publication.
"What we're trying to do is spare some people the harms associated with unnecessary treatment,” Dr. Brawley told NPR. “And there are a lot of people who are demanding unnecessary treatment.”
ASCO and members weigh in
The challenge with conditions such as DCIS is that oncologists have no way of knowing those patients for whom the treatment would be “unnecessary.” All of the ASCO members interviewed for this article agree that this is the real problem, and more research is needed to develop the tools in order to predict which early cancers will remain indolent or become aggressive. Where these same oncologists differ, however, is on changing the nomenclature.
ASCO’s position, provided by Chief Medical Officer Richard L. Schilsky, MD, FACP, FASCO, is one of caution. “Current diagnosis of lesions like DCIS is still based on microscopic appearance, and until we can tell at a molecular level which DCIS lesions are dangerous and which are not, it is in my view premature to start renaming things,” he said.
Dr. Schilsky also questioned if dropping “cancer” from a DCIS diagnosis will affect patient behavior in a negative way and cause the patient to become noncompliant with medical recommendations.
“We really need some hard thinking and research about whether and how changing the names of early-stage cancers will influence or modify the health behaviors of patients,” he said. “If DCIS is suddenly no longer cancer but an ‘indolent epithelial lesion’ will patients become complacent and fail to adhere to recommendations for medical follow-up? We should really better understand the potential unintended consequences of changing our nomenclature before we do it.”
Larry Norton, MD, Deputy Physician-in-Chief for Breast Cancer Programs at Memorial Sloan-Kettering Cancer Center and Medical Director of the Evelyn H. Lauder Breast Center, has similar reservations regarding the name change.
“What we are seeing here is recognition of the limitations of the language we use to categorize histologic findings to accurately capture universally understood diversity in behavior,” he said in an interview with ASCO Connection. “As I understand it, what the proponents of a name change are suggesting is that the behavior of physicians and patients could be altered toward more ‘watchful waiting’ and less preventative intervention. These options are already exercised in practice, and whether a name change would change the likelihood of one course or another is moot in the absence of data. Similarly uncertain is how the public and the profession would react to a shift in therapeutic decisions. Would a patient who was told that she had an indolent lesion of epithelial origin but who later developed a brain metastasis from the same feel that she had made a good decision when, on the advice of her physician, she had chosen no preventative actions?”
Lowell E. Schnipper, MD, Chief of the Hematology/Oncology Division at Beth Israel Deaconess Medical Center, has a slightly different view point. Dr. Schnipper, also a breast cancer specialist, is constantly reminding his patients with DCIS what it is and what it isn’t. He finds that many patients with DCIS have a difficult time differentiating it from a true life-threatening invasive cancer and a lesion that needs to be watched.
“In regards to the content of the [JAMA] article that suggests [DCIS] is almost inflammatory in terms of patient’s interpretation of it and even in the way doctors react to it, I would say there is a substantial reason to believe that is the case,” he said. “I’ve had patients [with DCIS] who are quite tearful and say, ‘I have cancer.’ I think renaming it is probably a good thing to dissociate it some way from the idea of ‘I have cancer.’”
Ms. Blum agrees that oncology needs to find a better way to label premalignant lesions that may never be harmful and true invasive cancers in order to avoid patient confusion and anxiety.
“I do think it would benefit people to be told they have an indolent lesion and then be told what that means,” she said. “Pulling back on some of this language could benefit people. I think we’ve created a culture of too much intervention, too much action, too much ‘you have to do something,’ and it’s made people more fearful than they need to be.”
Lewis E. Foxhall, MD, Vice President for Health Policy and Professor of Clinical Cancer Prevention at The University of Texas MD Anderson Cancer Center, has also found that the word “cancer” holds a very specific weight with patients and the oncology community should think carefully about how it’s used.
“Our words are important, and the labels we put on things carry certain meanings for patients,” he said. “The dictionary diagnosis and description of cancer is something that is characterized by persistent abnormal growth that leads to death and that’s an idea that most people have in their head. I can say to a patient that they have DCIS, and I can tell them it has an excellent prognosis if treated. That’s in large part accepted by the patients and the public and we end up treating it, but we need to know more about the prognosis if we don’t treat it. Not all of these progress to invasive cancer.”
Until oncologists have a better way of determining which patients with premalignant conditions will need treatment and which patients won’t, the debate over what should truly be considered cancer and what isn’t will continue.
“We all know that what we really need is a means of prognosticating with acceptable accuracy the future of a histological finding, and work in that regard is ongoing and must be supported,” Dr. Norton said. “But the point here is that the emphasis in the previous sentence is on the word acceptable, which is largely subjective. No matter how good we get at this, short of perfection, people will need to make choices. The real enlightenment here is the recognition that there are few clear right-or-wrong decisions in much of medicine, except, sometimes, in retrospect. But there are better-or-worse recommendations, and improvement in that regard will require advances in the art of medicine—communication in particular—as well as the science. I look forward to the day when a change in terminology will facilitate such communication.”