Doctors worry cancer terminology contributes to overtreatment

Luis Fábregas
| Sunday, June 1, 2014, 10:01 p.m.

If Dr. Steve Shapiro had his way, some cancers wouldn't even be called cancer.

“The word cancer just scares people to death. It's expensive and it weighs on people's minds, both the patient and the doctor,” said Shapiro, chief scientific officer at UPMC and a lung cancer expert.

What's troubling, Shapiro and other experts say, is that the word often is used for lesions so tiny or insignificant, they might never develop into an illness that would cause harm. They say this leads to unnecessary treatments such as chemotherapy, radiation and surgery to remove tumors that could go away on their own.

To avoid this, a panel of experts advising the National Cancer Institute is urging the medical community to reconsider use of the word. In a May article published in The Lancet, the experts suggest renaming some pre-cancerous lesions and tailoring screening to individual patients.

“The medical community, just like the public, thinks if you hear the word cancer, it's something you're going to die of, unless you treat it and treat it aggressively, whereas there's a whole spectrum of disease, and it can be low-risk and it can be high-risk,” Dr. Laura Esserman, the study's lead author and a breast surgeon at University of California San Francisco, told the Tribune-Review.

“Maybe part of the solution is to take these low-risk things and rename them and move them out of that category of things that we have a visceral response to.”

Doctors for years pushed for early screening and detection, especially for cervical and colon cancers. Yet early screenings did little to impact deaths from prostate, breast and lung cancers, Esserman said. Indeed, early screenings tend to find slow-growing cancers that might never amount to much.

That's the case with Eric Joy of Hampton, whose doctors uncovered early-stage prostate cancer about seven years ago. The elevated PSA test didn't cause Joy much alarm, because he read about the illness and learned it tends to be slow-growing compared with other cancers.

“It's likely that something else is going to kill me before prostate cancer,” said Joy, 71, retired deputy director of Allegheny County's juvenile court. Joy takes medication to slow the cancer's progression.

Doctors say they are confounded by patients who choose treatment instead of waiting until the illness progresses. Dr. Ian Thompson, chair of the Department of Urology at the University of Texas Health Science Center at San Antonio, said some patients insist on treatment despite explanations that early-stage prostate cancer doesn't kill and treatment can lead to sexual dysfunction or urinary incontinence.

“They go home and talk to their next-door neighbor who says, ‘You have cancer and your doctor didn't do anything?' Or, more commonly, they'll talk to their kids and their kids insist on some kind of second opinion, and the patient gets a second opinion and gets operated on and is told by the physician, ‘I cured you,' ” Thompson said.

Operations and other treatments can be expensive, Shapiro said, a conundrum for those in the health care industry looking to cut costs. Patients increasingly pay more for their care, and Shapiro doesn't want to “put them through something that will harm them financially if they don't need it.”

To help predict what treatment, if any, will work, doctors foresee increased development of tests to identify biomarkers in the blood, urine and tissue.

Some tests are in use. The BRCA gene blood test, for example, uses DNA analysis to identify mutations in two breast cancer genes responsible for most hereditary breast and ovarian cancers.

Other biomarkers might tell doctors which cells are likely to develop into malignancies that ought to be treated.

Esserman suggests making personalized cancer screenings based on the type of cancer a person might be at risk for developing. In January, she plans a trial with 150,000 women to determine whether they would benefit from personalized breast cancer screening rather than an annual screening recommended for certain age groups.

“People think that screening has a bigger impact on mortality in breast cancer than it does, so everyone is afraid to make the change,” she said.

Another solution is renaming slow-growing lesions with the term “indolent lesion of epithelial origin,” or IDLE. The term could be used for cancers such as ductal carcinoma in situ, an early form of cancer usually found during a mammogram.

Dr. David Parda, chief of Allegheny Health Network Cancer Institute, said terms such as IDLE might have no meaning for patients who simply want to know what type of treatment they need.

“We have to help people understand that cancer is a part of life that all of us are going to be affected by,” Parda said.

Esserman dismissed the notion that changing the terminology might be a way of rationing care. She suggested that some of the money spent on unnecessary treatment could pay for research to better understand why rates of some cancers continue to rise.

“This is not about rationing care. This is about being rational about care,” she said.

Luis Fábregas is Trib Total Media's medical editor. Reach him at 412-320-7998 or

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