A colorized electron microscope image of a breast cancer cell.

Book Review: How to Confront the Fear of Cancer

Republish

About 600,000 people die of cancer every year in the United States, making it the country’s second most common cause of death, after heart disease.  Beginning in 1971, when the Nixon administration launched its so-called war on cancer, the nation has spent billions of dollars to improve disease prevention and treatment.

In the ensuing decades, experts have debated the effectiveness of the aggressive, all-out approach: Surely there have been many advances, great and small, including an improvement in overall survival rates across all types of cancers. Indeed, few weeks go by without a report of some exciting development, whether it’s a new cancer drug or a new scientific breakthrough.

Yet there have also been critics, along with a steady stream of books, lamenting the underfunding of cancer research in the earliest stages of disease, the herky-jerky pace of progress, and the cost — both physical and financial — of the vast war.

BOOK REVIEW “Curing Cancerphobia: How Risk, Fear, and Worry Mislead Us,” by David Ropeik (Johns Hopkins University Press, 392 pages).

One area that has received relatively little criticism is cancer screening, that group of tests such as Pap smears, mammograms, and blood work. The promise of early detection is irresistible: more effective and less toxic treatments, higher cure rates, and fewer long-term effects from chemotherapy or surgery or radiation. But current tests also have serious limitations, and debates rage in scientific and public health corridors regarding whom to screen, how often to screen, and what to screen with.

In “Curing Cancerphobia: How Risk, Fear, and Worry Mislead Us,” David Ropeik takes a deep dive into the world of cancer screening and raises a troubling question: Has screening, despite its clear medical and psychological benefits, inadvertently created an irrational fear of cancer — a cancerphobia — that, in turn, has needlessly frightened or harmed people? “A fair reading of the evidence,” he maintains, “supports the observation that, in some cases, our fear of cancer exceeds the actual risk and does great harm all by itself.”

Ropeik is well-suited to confront the issue. As a former teacher at Harvard, a former Knight Science Journalism Fellow, and the author of two previous books, “How Risky is it, Really?: Why Our Fears Don’t Always Match the Facts” and “Risk: A Practical Guide for Deciding What’s Really Safe and What’s Really Dangerous in the World Around You,” written with George Gray, Ropeik has spent much of his career trying to help people understand the concept of risk so they can make better decisions.

In his new book, he begins by tracing the history of the American public’s fear of cancer, and its psychological impact. Back in the 1950s, Ropeik notes, one of the early adopters of the we are overtreating and overscaring point of view was George Crile Jr., a prominent surgeon who was one of the first to speak up against the overuse of radical mastectomy for the treatment of breast cancer and was a crucial, initially lonely voice pushing hard to upset a medical orthodoxy. His and others’ work has led to a complete overhaul in the way breast cancer is managed to the benefit of untold thousands of women.

In that spirit, Crile also criticized a second orthodoxy: our general approach to cancer management. In his 1955 book “Cancer and Common Sense,” he used the recently coined term “cancer phobia” to make the case that a fear of cancer had been impressed on the public “until this fear has become almost as great an enemy as cancer itself.”

That fear has been rising in intensity ever since, Ropeik maintains, ushering Americans into a world of “overscreening, overdiagnosis, and overtreatment.” In fact, he claims that the fear is “so ingrained that doing anything possible against the monster of cancer just seems like it must be the right thing to do.”

Fear of cancer had been impressed on the public “until this fear has become almost as great an enemy as cancer itself.”

While Ropeik is clear that some screening — for cervical, colorectal, breast, and lung cancer in particular — does indeed save lives, he argues that we may be screening too often for too many kinds of cancer and with the wrong approaches.

The truth, he notes, is not all cancers are equally severe, and not everyone needs routine testing and aggressive treatment. In fact, he writes, “Some screening technologies don’t save lives at all, or save so few that the harms they cause — from the stress of worrisome false positives to the harmful side effects of overtreatment for frightening but less-threatening types of cancer — outweigh their benefits.”

The heart of the book lays out Ropeik’s case in detail, using his expertise in quantifying and explaining actual risk to analyze population and screening data for five forms of cancer — lung, breast, prostate, thyroid, and colorectal.

In each case, he carefully sifts though often-conflicting evidence of overscreening, overdiagnosis, and overtreatment, while emphasizing that “some screening programs have been found to have true net benefit for some populations” and that what we label “harm” during treatment is “in the eye of the beholder.”

Support Undark Magazine

Undark is a non-profit, editorially independent magazine covering the complicated and often fractious intersection of science and society. If you would like to help support our journalism, please consider making a donation. All proceeds go directly to Undark’s editorial fund.

In the chapter on lung cancer, Ropeik shares a simple chart — based on data from the National Lung Screening Trial — to skillfully display the benefit of lung cancer screening (it saves three lives per 1,000 screened) versus the risks of false positives that require further testing (365 lives per 1,000 screened), including 25 per 1,000 who required an invasive procedures such as a biopsy or surgery.

This visual representation, along with another used for mammography, is particularly helpful for readers trying to navigate frequently dense and contradictory research. In real life, charts like these are among many effective “decision aids” used in today’s routine medical care, and it’s a welcome method to bridge the distance between reams of impersonal public health data and the slim hopes of the frightened individual with an abnormal test result.

Even so, making recommendations based on population-level data can be problematic. After all, medical caregivers must choose either to underscreen and accept the consequences of missed curable cases or overscreen and accept the potential health consequences. There is no third way.

Ropeik is acutely aware of the disconnect, addressing it in an unusual step-back in the book’s very first sentence: “This book needs to start with an apology.” Acknowledging the primacy of personal feelings and choices about cancer, he says his intention is instead to consider “the evidence at the population level only, from the general perspective of public health,“ not from the decisions in front of a specific individual.

Medical caregivers must choose either to underscreen and accept the consequences of missed curable cases or overscreen and accept the potential health consequences. There is no third way.

And to his credit, he continually stresses that “fear of cancer is entirely understandable,” even while wading through voluminous amounts of research and data. “Choices made about cancer screening and treatment are personal and, no matter the outcome, are not judged here as right or wrong, wise or irrational.”

With that in mind, Ropiek urges those considering screening or facing cancer to consult the full array of decision-making tools available through health care providers or online, which he lists toward the end. “That’s what combating cancerphobia comes down to: not letting your fear fly your plane,” he writes.

In the end, “Curing Cancerphobia,” like American health care itself, is caught in a no man’s land, a place choked with a seemingly endless stream of information, advice, studies, and reasonable experts giving reasonable recommendations that, finally, just don’t help that much. Cancer, like all serious illnesses, forces patients to rely on an unstable mix of instinct, emotion, and cold, hard facts to trace a path forward.

“The decisions people make to deal with fear of cancer,” Ropiek reminds us, “are theirs to make and theirs alone, in the context of their own lives.”


Kent Sepkowitz is a physician in New York City who has written for Slate, The Daily Beast, and The New York Times.

UPDATE: This piece has been updated to note the data source for a chart in Ropeik’s book. The data on false positives in lung cancer screening comes from the National Lung Screening Trial.

Republish