Cancer Phobia. When the Fear is Worse Than the Disease
I'm an Instructor at Harvard, a consultant in risk perception and risk communication, author of How Risky Is it, Really? Why Our Fears Don't Always Match the Facts, and principal co-author of RISK, A Practical Guide for Deciding What's Really Safe and What's Really Dangerous in the World Around You. I run a program called Improving Media Coverage of Risk. I was the Director of Risk Communication at the Harvard Center for Risk Analysis, part of the Harvard School of Public Health, for 4 years, prior to which I was a TV reporter, specializing in environmental issues, for a local station in Boston for 22 years.
I got a call from a friend last year. He had prostate cancer and wanted some help thinking through what to do. He had gone to his doctors for the details about his physical condition. He was calling me for help dealing with the other condition he knew he was facing — excessive fear of this dreaded disease that sometimes does more harm than good…what some have called Cancer Phobia.
He knew that, like many cases, his prostate cancer had been detected when it was still asymptomatic, and was the slow-growing kind unlikely to ever become symptomatic or to kill him — given he was an otherwise healthy man in his 50s — before old age did. He also knew about the occasional side effects of treatment — urinary incontinence, rectal bleeding, sexual impotence — risks that thousands of men take each year not so much to remove from their bodies something that might harm them, but to remove from their minds the fear of living with cancer.
Nonetheless, he said he was leaning toward treatment, and recognized that his emotions were making it hard to think rationally about the clinical medical evidence. I gently suggested that the perception of risk is so often based more on emotion than just the facts, and the roots of the fear of cancer are so broad and deep, that understanding these anxieties might not help much. But I offered what I could.
Physical risks, I told him, have psychological characteristics that make them feel scarier or less scary, regardless of actual probability or evidence. And cancer triggers a couple of the most powerful of these emotional alarms. Research by Paul Slovic of the University of Oregon and Baruch Fischhoff of Carnegie Mellon, experts in the field of decision and risk, has found that the more pain and suffering a risk involves, the more fear it causes. Many forms of cancer involve a great deal of pain and suffering. We are also more afraid of risks we can’t control and, despite great medical progress, most people still feel they have little control over cancer — either getting it or fighting it. Many people still assume that a diagnosis of cancer is a death sentence.
I also told my friend that cancer has been stigmatized. In the psychological sense this means that as soon as we hear the word, subconsciously all sorts of bad and frightening associations go off which frame how we think, and how we feel, about anything else we then learn. This aspect of cancer phobia is rooted in the perfect storm of conditions in the 1950s and 60s when cancer first fully blossomed into public consciousness. The atomic bombings of Japan, and the Cold War, seared into our psyche the tangible existential threat of nuclear annihilation, a deep dread that was closely linked with fear of radiation from the fallout from atmospheric nuclear weapons testing. The health consequence of radioactive fallout — the reason to fear it — was cancer.
Evidence first started reaching the public in the 1950s about the carcinogenicity of smoking. An issue of Reader’s Digest in 1950 featured an article titled “Cancer by the Carton.” And as the modern environmental movement got going in the ‘60s, it used the threat of cancer as a central rallying theme. Rachel Carson’s classic cri de coeur, “Silent Spring,” featured a whole chapter on cancer, warning that we were “living in a sea of carcinogens.” To drive home those fears, she regularly compared the danger of industrial chemicals to the risks of radiation.
Given how this confluence of events magnified the innately frightening nature of cancer, it was no wonder that when the National Cancer Act passed in 1971 the introduction declared cancer to be “the major health concern of Americans today.” It still is. A recent Harris poll found that cancer is the most feared disease in the United States; 41 of those polled listed it at the top, with Alzheimer’s next, at 31 percent.
The benefit of all this fear, of course, has been a body of laws and regulations, and changes in individual behavior, that have significantly reduced the risk of what is indeed a group of horrible diseases. It has given rise to medical progress that has made many once-fatal forms of cancer treatable, and in some cases even preventable. But the costs of cancer phobia have also been significant.
One example of the impact it has had at the policy level can be seen at the National Institutes of Health, which spends more than twice as much researching the molecular biology of cancer ($5.4 billion a year) than on figuring out the molecular mechanisms of heart disease ($2 billion/yr), which kills far more people. It’s a fair to suggest that more people might be alive or healthier if those investments were proportional to the risk.
The health damage from cancer phobia has been significant at the individual level, too, and not just with prostate cancer. In “Overdiagnosis in Cancer” doctors at Dartmouth classified 25 percent of breast cancers detected by mammography, 50 percent of lung cancers detected by chest x-ray or sputum tests, and 60 percent of prostate cancers detected by the prostate specific antigen (PSA) test, as “overdiagnosed.” These are cancers that will either never become symptomatic, and may even disappear. The authors describe how these overdiagnoses often lead to medically unnecessary treatments, sometimes involving radical surgery, that have major impacts on the patients’ quality of life.
The authors of that study are careful not to ascribe this to fear. But a panel of experts on prostate cancer convened by the National Institutes of Health was pretty clear that our dread of cancer contributes significantly to the harm that it does. So much so that for slow growing prostate cancer they recommended: “Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term ‘cancer’ for this condition.”
I didn’t get into all those details with my friend. But I did tell him that the fear of cancer can contribute to chronic stress, which raises blood pressure and increases the risk of cardiovascular disease, and which weakens the immune system and increases the likelihood of all sorts of health problems. A weakened immune system increases the likelihood of getting cancer in the first place, and makes it harder to fight off once you get it. So unless he could deal with the fear of living with cancer, cancer phobia alone might make him sick.
My friend was in a tough place. Cancer, in many of its forms, is a terrible disease. I’ve had it. I’ve lost relatives and friends to it. But cancer is also a frightening disease, and that fear, and the harms it can do, are no less real than the disease itself. Cancer Phobia is powerfully rooted in the deep instinctive ways we perceive and respond to risk, and like many forms of cancer itself, hard to overcome. My friend thanked me, and said that just knowing all that gave him a reassuring sense of control and helped him put things in perspective as he faced his difficult choice.
A year after our conversation my friend and his wife treated me to dinner at a fine restaurant. He’d decided to have radiation treatment to eliminate the cancerous cells, and was at peace with his decision, even though the treatment left him with at least one permanent side effect. He had to go to the rest room three times over two hours to urinate, something this 50-ish year-old man will have to deal with for the rest of his life…a price he was willing to pay not so much to cure a physical disease, but to cure the powerful fear he did not want to face.
(This piece originally ran in the New York Times Opinionator column online as part of their ongoing series on anxiety.)
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