The Many Harms of Cancer-phobia

I recently read David Ropeik’s book, Curing Cancer-phobia and found that it contained a lot of, well, sensible messages. I asked if he would write something for Sensible Medicine. Not only did he write a great piece, but he managed to use the word sensible five times in the opening paragraph!

Adam Cifu

Doctors are called on to make sensible choices all the time. Their patients have to make sensible choices too. But sensible is a malleable word. What seems sensible to doctors often seems anything but to their patients, whose bodies and even lives are on the line. In no area of medicine is this more true than cancer, where deep fear often leads to choices that fly in the face of what is medically sensible, choices that cause great harm.

In 1948 Dr. John Ryle called this “cancerphobia”, describing it in dry British academ-ese as a condition “which may… assist the perpetuation of much unhappiness and physical and mental illness.”[i] In 1955, Dr. George Crile Jr. wrote in his book Cancer and Common Sense, “It is possible that today, in terms of the total number of people affected, fear of cancer is causing more suffering than cancer itself.” He described this as “…a new disease”, which he called “cancerphobia”.

Cancer can be a cruel disease, causing so much suffering, that in many ways fear of this awful disease makes complete sense. It may seem offensive to suggest that in some ways our fear of cancer is a phobia, what Merriam Webster defines as “an exaggerated, usually inexplicable and illogical fear.” But it is sadly true. In many ways, our fear of cancer is so fierce that it leads to choices that feel right…sensible even …but are also, obviously bad for our health. As George Bernard Shaw wrote, “There is always danger for those who are afraid.”

Consider the average risk asymptomatic person who is younger or older than mammography or PSA screening is recommended for, but who, under the shadow of the fear of cancer, screens anyway, despite evidence that such screening is more likely to harm them than help, producing worrying false positives and in many cases leading to unnecessary treatment for scary but non-threatening conditions. An analysis done by the CDC for my book, Curing Cancer-phobia, How Risk, Fear, and Worry Mislead Us, found that in 2017, 21.3 million American women had cancer screening tests even though they were outside the age ranges for screening as recommended by the U.S. Preventive Services Task Force. 10.1 million men outside the recommended age ranges had a PSA test (the recommendation is only that men should talk it over with their doctors). 1.4 million people outside the recommended age ranges – mostly older than 75 – had some type of colorectal screening.

Consider the harmful medical cascades that screening often triggers:

• The woman whose mammogram led to a diagnosis of low-grade ductal carcinoma in situ – DCIS – who was told that her disease is highly unlikely to ever cause any harm, but who chose to have a mastectomy (or sometimes double mastectomy, with zero additional clinical benefit). Crude calculations in Curing Cancer-phobia estimate this happens to more than 13,000 American women per year.

• Consider the man whose doctor ordered a PSA test as part of an annual physical… without asking the patient if he wanted one… who was subsequently diagnosed with indolent low-risk prostate cancer, was offered treatment by active surveillance, but who chose a prostatectomy anyway. Crude calculations estimate this happens to more than 20,000 men in the U.S. per year.

• Consider the person whose chest CT, done for another reason, identified a thyroid nodule that turned out to be a micro papillary tumor, who was told that such tumors are common and in almost every case entirely harmless, but who chose a thyroidectomy anyway. (Reliable figures for this were not available.)

These surgeries, all of which cause side effects that range from moderate to severe and from common to – rarely – death itself, are essentially “fear-ectomies”, removing something that frightens the patient far more than it medically threatens them. The side effects: post mastectomy pain syndrome, breast cellulitis, and psychosocial issues for women;  erectile dysfunction and urinary and bowel incontinence for as many as one third of men who have prostatectomies; hypothyroidism, vocal cord damage and hypoparathyroidism for many thyroidectomy patients; and in rare cases death itself, are the direct product of cancerphobia, a fear that in these cases vastly exceeds the clinical risk and produces choices that feel right but do great harm.

And not just to patients. As Dr. Ryle noted in 1948, cancerphobia was so widespread that it “is to be thought of both as an individual and, by reason of its prevalence, as a social problem.” Rough peer reviewed calculations estimate that overtreatment of overdiagnosed breast, prostate, and thyroid cancer costs the U.S health care system at least $5 billion/yr. Overscreening cost the U.S. health care system roughly $9 billion. Overscreening and overtreatment of cancer cost the economy an estimated $1.7 billion in lost productivity.

Beyond the medical area, fear of cancer leads to opposition to (non-greenhouse gas emitting) nuclear energy, and fluoridation of public drinking water. It leads consumers to spend billions on organic food and vitamins and supplements that offer to protect people from cancer, but don’t. It leads to vastly more government spending to reduce cancer risk than on any other public health hazard, including heart disease, which kills roughly 9% more people per year.

The fear of cancer is seared into the public psyche, with deep historic and psychological roots. And cancer has unique psychological characteristics that the study of the psychology of risk perception by Paul Slovic and others has identified as distinct ‘fear factors’. We are more afraid of threats we feel we have no control over, threats that cause great pain and suffering, threats we feel are imposed on us, and threats we’ve had some personal painful experience with. Cancer ticks all those boxes.

So “curing” cancerphobia is no more likely in the short term than curing all cancer itself. But as we are making progress against the disease, we also can, and should, work to reduce the harms of cancerphobia. And that work is beginning. Pioneers are bringing the problem of overdiagnosis to wider attention in the medical community. Others are working to remove the frightening “C word” from diagnoses of indolent disease, as has been done for the most common and least threatening type of thyroid cancer. Many are arguing that watchful waiting and active surveillance should be acceptable standards of care for some breast cancers, as has been done for prostate cancer. And even staunch advocates of screening are slowly beginning to accept, and inform the public, that mammography has surprisingly minimal mortality benefit and causes surprisingly large harms.

Work to reduce the harm of cancerphobia is today where the battle against the disease was in the 30s and 40s and 50s, just beginning. Slowly, incrementally, and quietly, the medical fight against cancer has made as many as two thirds of all cases treatable as chronic disease or curable outright, though that progress has unfortunately not yet helped the public update our emotional relationship to the Emperor of All Maladies. So there is every reason to hope that, with recognition of the problem of cancerphobia and work to combat it, progress can also be made to reduce the harm that our deep and in some ways outdated fear of cancer can cause.

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[i] J. Ryle, The Twenty-First Maudsley Lecture, British Journal of Psychiatry, 94, no. 394 (1948): Crile Jr., G., Cancer and Common Sense, Viking Press, NY, 1955.

David Ropeik is a retired instructor who taught at Harvard University. He is the author of How Risky Is It, Really? Why Our Fears Don’t Always Match the Facts. He was an award-winning broadcast journalist in Boston, a science columnist for the Boston Globe, a board member of the Society of Environmental Journalists, and a Knight Science Journalism Fellow at the Massachusetts Institute of Technology.

Photo by Majestic Lucas