Recently, a working group of experts who advises the National Cancer Institute (NCI), and who comprises some of the top scientists in cancer research, proposed that the terminology of some early-stage, noninvasive forms of cancer, such as ductal carcinoma in situ (DCIS), be changed.
Currently, DCIS is considered the earliest form of breast cancer, and the experts recommend it be reclassified as indolent lesions of epithelial origin (IDLE).
The idea behind this proposal is that disease labels can induce an emotional response; therefore, it may be possible to reduce patients’ distress about receiving this diagnosis through a simple semantic change. In addition, it is hypothesized that reclassifying some conditions may help decrease potentially unnecessary treatments.
“The fundamental problem with the term ‘cancer’ when it is attached to a possibly premalignant condition is that the patient—and often the physician—think that ‘cancer is cancer’ and that something must be done. Many precancerous conditions have a very low risk of progressing to cancer and, even if cancer develops, it may have a very low risk of causing harm in the patient’s lifetime,” said Ian M. Thompson, Jr., MD, Director of the Cancer Therapy & Research Center at the University of Texas Health Science Center, San Antonio, TX. “What needs to be done is to assign a very precise word that is linked directly with the risk of the condition. The word cancer often has a very bad connotation.”
Dr. Thompson and two of his colleagues who served as chairs of the NCI working group were charged with developing ways to improve current approaches to cancer screening and prevention. As a result, they recently published an article in the Journal of the American Medical Association (JAMA) that recommends new strategies for reducing overtreatment of cancer.1 They contend in this article that when cancer screening programs were widely initiated three decades ago, medical knowledge of the disease was more simplistic, and the intent was to detect cancer at its earliest stages in order to reduce morbidity and mortality.
However, the group argues that early diagnosis has not led to a proportional decline in serious disease and death. Instead, current screening programs identify not only malignant cancers but also slow-growing, low-risk lesions, and combine them into the same treatment process. Dr. Thompson and his colleagues suggest this is leading to overdiagnosing and overtreating of some forms of cancer that might never actually cause harm to an individual.
Related: Screening Mammography Has Led to Overdiagnosis of Breast Cancer
Laura Esserman, MD, MBA, co-author of the JAMA article and Director of the Carol Franc Buck Breast Cancer Center at the University of California San Francisco, San Francisco, CA, said that because of advances in scientific understanding of the biology of cancer, it is time for significant changes in practice and policy.
By recognizing that cancer is not one disease but rather a number of different diseases, Dr. Esserman said it is now possible to individualize treatment based on biology, thus avoiding overtreatment. Dr. Esserman added that the goal going forward is to personalize screening strategies and focus screening policies on the conditions that are most likely to result in aggressive disease and death.
The NCI working group contends that overdiagnosis is occurring across many medical conditions but is particularly common in breast cancer, lung cancer, prostate cancer, thyroid cancer, and melanoma. The group cites DCIS and Barrett’s esophagus as examples of how the detection and surgical removal of what have been called “precancerous lesions” have failed to substantially lower rates of invasive cancer. In contrast, colon cancer and cervical cancer serve as examples of effective screening programs that may help reduce incidence as well as late-stage disease.
The new recommendations include recognizing that screening will identify indolent cancer and changing terminology and omitting the word “cancer” from premalignant/indolent conditions. The recommendations also include convening a multidisciplinary body to revise the current taxonomy of cancer and to create reclassification criteria for indolent conditions. In addition, the authors propose creating observational registries for lesions with low potential for malignancy.
Is It More Than Just Semantics?
Richard L. Schilsky, MD, who is the Chief Medical Officer for the American Society of Clinical Oncology (ASCO), said he generally agrees with most of the recommendations put forth in the JAMA article. “The essence is to recognize that cancer is very heterogeneous in its clinical presentation and course and that people are very heterogeneous in their risk of developing cancer. The authors advocate for ‘risk-adapted’ screening,” said Dr. Schilsky. “I agree with this approach.”
However, he disagrees with the recommendation to change nomenclature and to drop the word cancer or carcinoma from some diagnoses. “My reasons for disagreeing are two-fold. First, we don’t yet have the biological insights and tools to really understand and predict which early cancers will behave indolently or aggressively. 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 or not, it is, in my view, premature to start renaming things. Second, 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,” Dr. Schilsky told ChemotherapyAdvisor.com.
If DCIS is suddenly no longer considered cancer but rather an “indolent epithelial lesion,” Dr. Schilsky is concerned that patients will 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. If we start renaming certain lesions, and that leads to an apparent decline in cancer incidence, will policy makers conclude that the war on cancer is won and reduce funding for cancer research?” questioned Dr. Schilsky.
Cynthia Ma, MD, PhD, who is an associate professor in the Medicine Division of Oncology Section of Medical Oncology at Washington University School of Medicine, St. Louis, MO, agrees with Dr. Schilsky in that creating new classification criteria for indolent conditions is premature. “We need more understanding on the biology of premalignant lesions before such reclassification is possible,” Dr. Ma told ChemotherapyAdvisor.com.
Will Changing the Name Change Behavior?
Steven Quay, MD, PhD, the President and Chief Executive Officer of Seattle-based Atossa Genetics, Inc., believes the way a condition is labeled may affect how willing patients are to make important lifestyle modifications, such as limiting alcohol consumption, watching their diet, exercising, and implementing stress-management techniques, for example.
“I don’t think we should bother changing the name,” Dr. Quay said in an interview with ChemotherapyAdvisor.com. “I don’t think they are going to get the outcome they want by changing the name. What they are trying to do is change behavior and stop women from over-responding.”
Contrary to Dr. Quay’s belief, Grace Dy, MD, an associate professor of oncology at Roswell Park Cancer Institute, Buffalo, NY, begs to differ. She does not agree with Dr. Quay and indicated that the proposed changes are long overdue. “I have been voicing the same concerns to my patients for years. The recommendations are a good starting point so that the reality of cancer overdiagnosis can be effectively conveyed to patients and to non-oncology specialists who may not be familiar with this issue,” Dr. Dy told ChemotherapyAdvisor.com.
The proposed changes may help patients perceive and understand the risks of their diagnoses better, said Dr. Dy. Too often, the intuitive reflex is fear and anxiety any time the word cancer is used. “Reframing the term will also influence the way most people in the health care field think about these preneoplastic conditions,” Dr. Dy said. “Bringing this issue to the surface is timely and will help oncologists improve their ability to discuss this more effectively with their patients.”
For now, Dr. Thompson hopes these proposed changes will help initiate discussions and debates on how to resolve the problem of overtreatment. There is a great deal of work to be done, but Dr. Thompson believes this is a first step in acknowledging a problem exists.
1. Esserman LJ, Thompson IM, Reid B. Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement. JAMA. 2013 Jul 29. doi: 10.1001/jama.2013.108415