The widespread attention to the recent revelations of cancer diagnoses by Princess Catherine, actress Olivia Munn, and King Charles, among others, demonstrate yet again that cancer is a feared disease. For good reason: It is a cruel killer, the second leading cause of death in the U.S. and a top killer around the world.
So public faith in cancer screening (checking seeming healthy people for signs of hidden disease) is deep, driven by the widespread understanding that finding cancer early — when it’s more treatable — is always better than finding it later.
Which makes the findings of a recent study in the Annals of the American Thoracic Society puzzling. Nearly half the people who were screened for lung cancer and got the frightening news that they tested positive delayed coming back in for treatment. The median delay was three and a half months. Not surprisingly, many of those people experienced worse outcomes.
That puzzling behavior is consistent with the findings of a survey in England that asked people what they would do if they noticed a change in their health that could be a sign of cancer. Forty percent said they would avoid seeing a doctor. Incredibly, 25% would just wait to see if the symptoms went away on their own.
What could possibly explain this apparent irrationality? In a word, fear. Or, in a slightly longer one, cancer-phobia.
Given how awful cancer can be and how much pain it has caused in so many lives, it may seem offensive to suggest that fear of it could be a phobia, what Merriam-Webster defines as “an exaggerated usually inexplicable and illogical fear.” But that term is sadly appropriate. In many ways, the widespread fear of cancer is so fierce that it leads to choices that feel right but are obviously bad for health. As George Bernard Shaw wrote, “There is always danger for those who are afraid of it.”
What doctors call delayed presentation is one such choice. Some people are so afraid of cancer they don’t want to face the reality they have it. Consider the elderly man who had trouble urinating, a sign of either an enlarged prostate or possibly prostate cancer. For months he “assiduously avoided any medical care.” Why? “Because the symptoms and signs of an enlarged prostate gland and prostate cancer are similar. My deepest fear was that I had prostate cancer.”
This was illogical fear indeed. The man was Dr. Vincent DeVita Jr., formerly physician in chief at the Memorial Sloan Kettering Cancer Center in New York, president of the American Cancer Society, and, between 1980 and 1988, director of the National Cancer Institute and the National Cancer Program. He tells his story in his book “The Death of Cancer” (Sarah Crichton Books, 2016).
After he was finally diagnosed with cancer, DeVita wrote, “You might assume that with my background, I would know exactly what to do and whom to go to. You might assume that I wouldn’t be completely bowled over, to the point of numbness, by my diagnosis. But you would be wrong. For close to a week, I lived in a daze. What repetitively went through my head were the various scenarios that would take place leading to my death.”
Powerful fear overwhelmed objectivity for this world expert, who knew better than most that many forms of prostate cancer never cause any harm, and that many more threatening types are highly treatable.
DeVita is hardly alone. A review of 113 studies done from 1966 through 2003 found that “Fear that a symptom was indicative of cancer, or fear of investigation, of treatment, or of powerlessness were also found to be factors in increasing time to presentation for upper and lower gastrointestinal cancers, urological cancers, gynaecological cancers, and lung cancer.” In a review of 18 surveys of cancer patients in the U.K., nearly one-third of all participants reported that worrying about what the doctor might find might put them off going to the doctor; 22% said they would be “too scared” to see a doctor.
A meta-analysis of 38 studies on delayed presentation of breast cancer showed that 20% to 30% of women delayed coming in for medical attention for least three months after their symptoms appeared, and “that women who delay are more likely to express explicit fears about the consequences of diagnosis and treatment of the disease.”
A study of Latinas in the U.S. who had immigrated from Central and South American countries reported that women “did not want to go to the doctor for fear that they will be told they will die. Because informants believed that breast cancer is fatal, they anticipated that knowledge of a breast cancer diagnosis would render them terribly hopeless.” And a study titled “Association of cancer worry and perceived risk with doctor avoidance” reported that nearly 30% of respondents aged 50 and up avoiding visiting their doctor “even when they suspected they should.” Why? Fear based on their belief that cancer is incurable, the false but still common belief that cancer always kills.
Emotionally, the deep fear of cancer is understandable. Research on the psychology of risk perception by Paul Slovic and others has found people are more afraid of threats they believe they have no control over, anything that causes great pain and suffering, anything that feels imposed on them (environmental carcinogens), and anything they have painful personal experience with. Cancer carries all of those characteristics.
But fear of cancer, a fear that in some cases exceeds the medical evidence, causes great harm all by itself. Doctors, risk experts, and other communicators need to do more to combat this threat by helping the public understand that roughly two-thirds of cancers can now be treated as chronic diseases or cured outright; that many common forms of breast, prostate, thyroid, and lung cancer found early by screening are overdiagnosed, meaning they never go on to cause any harm at all; and that, for all its benefits, screening can cause harm too, by finding non-threatening cancers that scare people into more aggressive and risky treatment than they really need.
The fear of cancer is understandably seared into the public psyche. We are as unlikely, at least in the near term, to “cure” cancerphobia as we are to cure all cancer itself. But both do great harm. The War on Cancer badly needs another front, to battle the damage that too much fear of this dread disease can generate.
David Ropeik is a former award-winning environmental journalist, retired Harvard Instructor, and author of “Curing Cancer-Phobia: How Risk, Fear, and Worry Mislead Us” (Johns Hopkins University Press, 2023).