Cancerphobia: Our Changing Emotional Relationship With 'The Big C'

Since the 1930s, when increasing lifespans allowed us to live long enough for cancer to become more common, people across the developed world have feared cancer more than any other disease, though it has never outpaced heart disease as the leading cause of death.

Why is it that the second-most common cause of death has been the disease we worry about the most? Are those fears easing as the medical battle against cancer makes slow and steady progress? Or does excessive fear of cancer – cancerphobia – persist, and do real harm all by itself?

In 1900, “the Champion of the Men of Death” and “the Great Killer” wasn’t cancer. It was tuberculosis. But as public health programs brought TB under control and extended average life expectancy in the U.S. from 45 in 1900 to 55 in 1920, the prevalence of cancer rose dramatically. Within a generation, an awful disease that had been thankfully uncommon was suddenly striking people down, in great pain, everywhere. Everybody knew somebody who had cancer, and felt like they could be next.

Public education campaigns tried to make people aware of early warning signs (the forerunner of the American Cancer Society began in 1913), but in the process heightened fear of a disease that modern medicine — then a new and untrusted field — still couldn’t do much about.

It’s understandable that we were so afraid of a new and unfamiliar threat that was all around us, that we had no control over, and that caused particularly agonizing deaths.

Fast forward to the 1950s and '60s, when lung cancer rates soared among men who had returned from a war in which they had been given more cigarettes than bullets. Research connected smoking and cancer. That research was widely reported in the news. At the same time, the modern environmental movement was starting up, raising alarms about the cancer threat from nuclear weapons tests, and then from all the supposedly cancer-causing chemicals produced by modern technology.

Those developments added a profoundly powerful psychological element to cancerphobia. We came to believe that cancer is caused by external sources, that cancer is something done to us, that it’s imposed on us — a characteristic that also makes any risk feel more frightening.

Those fears persist, promoted by many public health and environmental advocates, despite the evidence that, while we can reduce our risk of cancer significantly through quitting smoking, getting adequate exercise and eating a healthy diet, roughly two-thirds of the mutations that happen across our lifetime are the result of natural processes.

Across all these decades, while the news media talked more and more openly about cancer in general, individual patients with the disease were stigmatized. Sufferers were shunned. Unable to offer any honest hope, many doctors refused to tell their patients they had cancer. Family members with cancer didn’t tell loved ones. Obituaries described those who had actually died of cancer as having succumbed to “a long-term chronic illness.” The disease was ominously hush-hush, fueling the fear.

Our emotional relationship with cancer has shifted over time. New chemotherapies in the 1970s and '80s empowered doctors to offer their patients hope and talk with their patients more openly and honestly. Famous people, including then-First Lady Betty Ford, began to acknowledge that they were being treated for cancer, encouraging everyone to be more open about the disease. The stigma began to fade. Cancer came out of the closet.

More recently, medical progress has made an increasing range of cancers either treatable as long-term chronic conditions, or curable outright. The feeling that cancer is inevitably fatal, that we are powerless against it, is still strong, but it’s fading. In a recent survey, 65 percent of U.S. respondents said they believe cancer is no longer an automatic death sentence.

Against that hope, however, surveys indicate that the fear of both the suffering from cancer treatment, and fear of the high and increasing cost of cancer treatment, are rising.

A diagnosis of cancer could still mean death, though cancer mortality rates have been declining for 20 years. Among the public, less than half understand the lifestyle choices they could make to significantly reduce their risk, but worry more about plastic bottles and GMOs. And underneath it all, cancer remains uniquely frightening because of the great physical suffering it often causes.

For all these reasons, cancerphobia persists. Thankfully, we are finally beginning to recognize that this fear can in certain cases do more harm than the disease itself. The excessive screening for cancer (many more people are screened than have any risk factors warranting screening) — a huge industry driven in part by cancerphobia — leads to overdiagnosis and overtreatment of some slow-growing or benign forms of the disease, including some types of breast, prostate, thyroid, among others, that won’t harm us at all.

Sadly, the biopsies and surgeries and other treatments for these essentially benign conditions often do significant harm. Experts in several fields are trying to devise new diagnostic language for certain pre-cancerous conditions that eliminate the word cancer, to reduce some of this damage.

And beyond direct harm to individual patients, cancerphobia drives up health care costs, fuels disproportionate research on (and charitable giving to) cancer compared to other major causes of sickness and death, and drives massive government regulation and expense to reduce cancer risk from all sorts of external causes that pose little danger compared to much larger threats.

With powerful new immunotherapies and individualized genetics-based treatment regimes coming on line, and the growing recognition that fear of cancer poses dangers all by itself, this may turn out to be the time that the deepest and most harmful forms of cancerphobia finally begin to fade. We should hope so. At this moment in cancer, the disease still takes a terrible toll. Clinically and emotionally. We need to recognize and find ways to treat both.

David Ropeik is the author of "How Risky Is it, Really? Why Our Fears Don’t Always Match The Facts," and is working on a new book, "Cancerphobia, How Fear Of A Dreaded Disease Can Do More Harm Than The Disease Itself."