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Scientists’ report cites need to redefine cancer

Overdiagnoses create fear, poor treatment, it says

Dr. Harold Varmus

Dr. Harold Varmus

NEW YORK — A group of scientists advising the nation’s premier cancer research institution has recommended sweeping changes in the approach to cancer detection and treatment, including changes in the very definition of cancer and eliminating the word entirely from some diagnoses.

The recommendations, from a working group of the National Cancer Institute, were published Monday in the Journal of the American Medical Association.

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In one example, they say that some premalignant conditions, such as one that affects the breast called ductal carcinoma in situ — which many doctors agree is not cancer — should be renamed to exclude the word carcinoma.

That way, patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.

The group, which includes some of the top scientists in cancer research, also suggested that many lesions detected during breast, prostate, thyroid, lung, and other cancer screenings should not be called cancer at all but instead should be reclassified as IDLE conditions, which stands for “indolent lesions of epithelial origin.”

Although it is clear that some or all of the changes may not happen for years, and that some cancer experts will profoundly disagree, the report from such a prominent group with the clear backing of the National Cancer Institute intensifies and broadens the debate and will probably change the national conversation about cancer, its definition, its treatment, and future research.

“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report.

the dangers of a diagnosis

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The impetus behind the call for change is a growing concern among doctors, scientists, and advocates for patients that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that grow so slowly they are unlikely to ever cause harm.

The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem.

However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat, and remove it, often at great physical and psychological pain and risk to the patient.

“We’re still having trouble convincing people that the things that get found as a consequence of mammography and PSA testing and other screening devices are not always malignancies in the classical sense that will kill you,” said Dr. Harold Varmus, the Nobel laureate and director of the National Cancer Institute. “Just as the general public is catching up to this idea, there are scientists who are catching up, too.”

One way to address the issue is to change the language used to describe lesions found through screening, said Dr. Laura J. Esserman, the lead author of the report in the Journal of the American Medical Association and the director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. In the report, Esserman and her colleagues said they would like to see a multidisciplinary panel convened to address the issue, led by pathologists, with input from surgeons, oncologists, and radiologists, among others.

“Ductal carcinoma in situ is not cancer, so why are we calling it cancer?” said Esserman.

Such proposals will not be universally embraced. Dr. Larry Norton, the medical director of the Evelyn H. Lauder Breast Center at Memorial Sloan-Kettering Cancer Center, said the larger problem is that doctors cannot tell with certainty which cancers will not progress and which will kill patients.

“Which cases of DCIS will turn into an aggressive cancer and which ones won’t?” he said, referring to ductal carcinoma in situ. “I wish we knew that. We don’t have very accurate ways of looking at tissue and looking at tumors under the microscope and knowing with great certainty that it is a slow-growing cancer.”

Norton, who was not involved in the report, agreed that doctors do need to focus on better communication with patients about precancerous and cancerous conditions. He said he often tells patients that even though ductal carcinoma in situ may look like cancer, it will not necessarily act like cancer.

“The terminology is just a descriptive term, and there’s no question that has to be explained,” Norton said. “But you can’t go back and change hundreds of years of literature by suddenly changing terminology.”

But proponents of downgrading cancerous conditions with a simple name change say there is precedent for doing so.

The report’s authors note that in 1998, the World Health Organization changed the name of an early-stage urinary tract tumor, removing the word “carcinoma” and calling it “papillary urothelial neoplasia of low malignant potential.”

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