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Science, fear vie in fight over breast screening

Dispute ensnarls UMass analyst

Judy Ockene, a UMass scientist, was a member of the task force. Judy Ockene, a UMass scientist, was a member of the task force.
By Stephen Smith
Globe Staff / December 28, 2009

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WORCESTER - For Judy Ockene, a University of Massachusetts scientist, breast cancer is not some academic abstraction. It is personal.

As a daughter, she watched her mother be diagnosed with the disease at the age of 44 - and survive. As a mother, she has two daughters of her own, one who is 42, another who just turned 40 - the very age when many women first undergo screening for breast cancer.

And now, with an air of dismay, she finds herself swept up in the controversy generated by new guidelines governing mammograms. Ockene, as a member of the US Preventive Services Task Force, helped draft recommendations that advised against routine screening for women in their 40s, which proved so inflammatory that the board’s top officials were summoned before a Congressional committee.

There was, Ockene said, never any contest between personal experience and scientific evaluation as she weighed the evidence on mammograms. Nor, she added, should there be.

“We all have our own stories about cancer,’’ said Ockene, a disease prevention specialist at the UMass Medical School. “But evidence is extremely important in all the work we do in health care. Does it mean it’s more important than all of the personal experiences? Well, I think it does. The evidence has to speak for itself.’’

But for the public, personal experience is often paramount. After the breast screening guidelines were released last month, media coverage overflowed with stories of women in their 40s whose tumors had been found with mammography, and who credited the scans with saving their lives.

Their consternation offers both a cautionary tale and a foreshadowing. With money from the economic stimulus package, and possibly from the pending health care overhaul legislation, the federal government is expanding its use of “comparative effectiveness research,’’ promising to exhaustively assess the strengths and weaknesses of medical treatments.

“If we’re really going to do comparative effectiveness research, there are going to be studies that show the tried-and-true things that we think are right aren’t really as good as we thought,’’ said Dr. Laura Esserman, a breast cancer specialist at the University of California, San Francisco.

“There’s a cultural acceptance that more is always better, and that explains why our health care costs get out of control,’’ Esserman said. “We have to understand there are limits to what we can do.’’

Ockene has been down this road before: She helped direct a study that drastically altered attitudes toward use of hormones in women after menopause. It was a reminder that science is rarely a linear pursuit. The medical landscape is pocked with reversals, yesterday’s panacea branded as today’s poison.

Mammograms themselves have been subject to course corrections: In 2002, the Preventive Services Task Force advised that screening start at 40. The panel updates its advice every five years, and so, in 2007, it enlisted a separate group of scientists to analyze eight mammogram studies. When that review failed to answer all of the task force’s questions, the panel commissioned elaborate statistical models to further assess benefit and risk.

“It’s unfortunate that things like this become so politicized, that science can’t just be science,’’ Ockene said.

Ultimately, the panel concluded that for many women, the benefits of starting routine screening at 40 - a 15 percent reduction in the risk of death from breast cancer - were eclipsed by the risks, including tests that erroneously suggest cancer is present and lead to unnecessary biopsies and surgeries.

For women 50 to 74, when breast cancer becomes more common, the panel said, screening for patients who are not at high risk of the disease can be done every other year, a recommendation at variance with groups such as the American Cancer Society, which advise annual screening starting at age 40. The panel could reach no conclusion about screening elderly women.

Ockene emphasized that the panel wants women in their 40s to discuss with their doctors whether to be screened, taking into account their own family history of cancer and their own perceptions of the risks and benefits of mammography.

She said the intended message was one of nuance rather than absolutes, but she, as well as other panel members, now concede they failed to communicate adroitly. In retrospect, they said, their findings should have been delivered in a more plainspoken fashion.

A Yale University specialist in medical ethics, Stephen Latham, argues that scientists need to be more sensitive to the whipsaw effect of shifting recommendations. For years, he said, women were urged: Get your mammogram.

Now, the message has turned murky.

“There is not a direct or easy path from the statistical truth about the costs and benefits of, say, mammography, and what the patient sitting before me really cares about, what this particular patient is willing to risk,’’ Latham said.

During a 90-minute interview, Ockene, a clinical psychologist by training, was, by turn, circumspect and expansive.

She expressed frustration at the rancorous reaction to the mammogram recommendations as well as the timing of their release, during a pitched political battle over national health care overhaul. The guidelines were made public on a schedule dictated by the medical journal that published them - more than a year after the task force completed its work.

“I found it personally frustrating to see so much of a response and people being maligned and it being said that they’re doing this for their own self-interest,’’ said Ockene, whose term on the task force ended a year ago. “There’s not one member of that task force that gets any money out of it.’’

The professional became personal when her daughters quizzed her on the recommendations: “ ‘Well, what do you think, Mom, about this and about all the uproar?’ ’’ Ockene recalled them asking.

For her daughters, family history is a factor, because of their grandmother’s breast cancer diagnosis.

“I didn’t say, ‘Oh, you must go out now and have a mammogram.’ I said, ‘You really need to look at your personal needs and what you feel comfortable with - and what the evidence is saying.’ ’’

Stephen Smith can be reached at stsmith@globe.com.

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