Cancer. The very word is frightening. Scary synonyms include malignancy, disease, corruption, and blight (“a cancer on society”). In one survey, two-thirds of the people who were asked, “What’s the first word that comes to mind when you hear the word cancer?” said “death”. Several other surveys have found that we worry more about cancer than any other disease, including heart disease, which kills roughly 100,000 more people per year. (There were 696,962 deaths from heart disease, 602,350 from cancer, in 2020.)
Yet for the past few decades, the overall mortality rate for cancer in the U.S. has been going down. The American Cancer Society just reported that cancer mortality in the U.S. is down 33% since 1991. As many as two-thirds of all cancers (there are more than 200 different types, and more subtypes), can now be treated as a chronic condition or cured altogether (not without considerable suffering during some of those treatments.)
The History and Psychology of Cancer Phobia
Why the persistently high fear of cancer? And more importantly, what is that fear doing to our health? Until we answer those questions, what some have called our cancerphobia will continue to cause great harm to us as individuals, and to society.
The fear of cancer is relatively new. It was only 100 years ago that cancer became one of the country’s top causes of death. Before that we didn’t live long enough for all the mutations to develop in a single cell that lead to uncontrolled cell growth and the metastatic spread of those ravenous cells around the body. The majority of cancers occur in people 55 and older. Life expectancy in 1900 was in the 40s.
The two decade controversy in the 50s and 60s about whether smoking causes cancer, made a taboo word — “cancer” — common. The nascent environmental movement, movies and books and the news media, burned the fear of cancer into the zeitgeist.
The National Cancer Act symbolically started “the war on cancer” in 1971, promising a blanket “CURE” for all cancer, a promise that remains unfulfilled. The progress reflected in the new statistics has been real and dramatic, but incremental. And more than 600,000 people in the U.S still die from cancer each year.
Cancer is uniquely frightening for inherent psychological reasons too. We fear any risk we think we can’t control, and a majority of the public still believes we can't control cancer, that a diagnosis of cancer automatically means death. We fear any risk that involves greater pain and suffering, as many types of cancer do. And we fear any risk more when we have had personal experience with it. Few lives in America have not been touched by this cruel disease.
The Harm Our Fear Can Cause
The fear of cancer is seared deeply into us. But just accepting that reality is dangerously naive, because the fear of cancer causes enormous harm, in some cases more than the disease itself. Roughly 15,000 women a year in the U.S. have either partial or total (or in some cases double) mastectomies to treat a form of breast cancer, ductal carcinoma in situ, which in its low-grade form has a survival rate or 100% without any treatment. Roughly 80,000 men diagnosed with a slow growing low-risk type of prostate cancer almost certain to never cause any harm in their lifetimes have aggressive surgery or radiation treatment anyway. Thousands of people have surgery to remove their thyroid glands after a tiny nodule of cancer cells is found, even after they are told that the survival rate for their kind of cancer is >99% without any treatment.
These ‘fear-ectomies’ cause harm in tens of thousands of people; serious side effects, (lifelong chest and arm pain after mastectomies, erectile dysfunction and urinary incontinence after prostatectomies), and in rare cases death from surgical complications. And they cost billions of dollars. The U.S. health care system spends nearly six billion a year treating cancers that frighten us into treatment our clinical conditions don’t require.
THE BASICS
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- Find a therapist to combat fear and anxiety
We also spend billions on cancer screening that has been found to do more harm than good for certain age groups; frightening people with false positives, or scaring them into more aggressive and potentially harmful treatment after detecting a cancer that is "overdiagnosed," highly unlikely to ever cause any harm. The CDC reports that 2.5 million people aged 40-44 and 11 million 75 and older had some kind of colorectal cancer screening in 2017, a total of 13.5 million people screened, though they were outside the ages for which such screening is recommended.
The desire for screening is understandable. Screening feels like we’re doing something about the risk — taking control. Here's a recent example. A study reported that doctors continue to prescribe prostate cancer screening tests for men 70 and up, for whom screening is not recommended because it has been found to do more harm than good. (Most prostate cancers in men that age grow so slowly the man eventually dies with the cancer, but not from it.) The reason for these tests? The desire to take control, against the fear of cancer.
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We need to rethink that fear. Cancer is a major cause of death, yes, and too often cruel. But our fears now exceed the risk in some cases, and those cases do more harm than the disease itself. Our emotional relationship with the Emperor of All Maladies hasn’t caught up to the progress we’ve made against cancer. Until it does, cancerphobia will continue to cause enormous damage.
Note: The statistics in this essay come from the book Curing Cancer-phobia: How Risk, Fear, and Worry Mislead Us, to be published this fall by Johns Hopkins University Press.
