- Despite great medical progress, we still fear cancer more than any disease.
- Understanding the history and psychology of our modern fear of cancer can help reduce the harm it causes,
This is the second in a series of posts based on my new book Curing Cancer-phobia: How Risk, Fear, and Worry Mislead Us.
The 75-year-old woman was paralyzed and unable to speak. After a thorough examination, the family physician told her children that he had found a lump in their mother’s thyroid and suspected that cancer may have started there and spread to her brain. He referred them to an oncologist, suggesting as a last hope that treatment with radioactive iodine might destroy the cancer and help their mother recover.
This is how the oncologist described the family’s surprising reaction when he delivered what seemed to be dire news:
The old lady lay paralyzed and stuporous in her bed. At last the tests were completed. There was no evidence of cancer.
“There is nothing that can be done,” the family were told. “Your mother has suffered a stroke from a broken blood vessel; the brain is irreparably damaged. There is no operation or treatment that can help.”
The oldest daughter leaned forward, tense, and with a quaver in her voice, asked, "Did you find cancer?”
“There was no cancer."
“Thank God,” the family exclaimed.
— from Cancer and Common Sense by George Crile Jr.
Cancer has been the most-feared disease in the U.S. ever since it became the number-two cause of death in the country back in the 1920s. But it has only been the second leading cause of death since then. Heart disease has always killed a lot more of us (except during the depression in the 30s, when pneumonia briefly enjoyed that dubious distinction).
Shouldn’t we be most afraid of what is most likely to kill us? Well, that may be how a cold-hearted insurance actuary thinks, but it's not how you and I do. The perception of risk is a more subjective affair, a mix of the facts as seen through the lenses of our feelings and the context of our own lives. As a result, we fear some things more than the evidence suggests we need to, and we fear other things less than the evidence warns us we should. This creates a “risk perception gap” that can get us in trouble all by itself. Cancerphobia is a clarion example.
Thankfully, research by pioneers like Paul Slovic has revealed the psychological details of our affective risk perception system. That work has identified several “fear factors" that help explain why cancer scares us so much.
Perhaps most importantly, these researchers have found that we are more afraid of any threat over which we feel we have no control. It is still widely believed that a cancer diagnosis is a death sentence, and that there is nothing we can do. Listen to what some patients said in a 2014 study of the fear of cancer:
- “Scared, death, feeling that you can’t control it, it’s out of your control.”
- “As soon as you hear cancer you think of the ultimate. There’s nothing more then, but for this person to die.”
- “My basic image I grew up with is cancer: Dead!”
Or to what Angelina Jolie said in “My Medical Choice," the 2013 New York Times essay announcing that she'd had a double mastectomy: “Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.”
The need for a sense of control explains the public’s nearly blind faith in cancer screening. Millions more screen than are in the groups for which screening is recommended. But screening gives us something we can do. Consider the observation of Jimmie Holland, a pioneering researcher in the field of psycho-oncology: "Many women and their doctors feel that a screening mammogram is the only positive action they can take to allay their fears.
Cancer is also particularly frightening because in many cases death from cancer involves great pain and suffering. As Slovic and his colleagues found, what shapes our fears of a given threat is less the likelihood that it will kill us and more the nature of how we could die. In a 2018 survey conducted by the American Society of Clinical Oncology (ASCO), the biggest reason people gave for their fear of a cancer diagnosis, tied with fear of death itself, was pain and suffering.
We are also more afraid of any risk that seems to be human-made than those that arise naturally. Consider this passage from Rachel Carson’s Silent Spring: "Instead of the natural environment there was rapidly substituted an artificial one composed of new chemicals and physical agents, many of them possessing powerful capacities for inducing biologic change. Against these carcinogens which his own activities had created man had no protection.”
In a 2001 public opinion survey, 80% of respondents said that cancer is caused by pesticides and food additives, and 88% said it was caused by pollution. In a 2019 update of that survey, 79% agreed either a little or a lot with the statement, “Everything causes cancer."
We are also more afraid of risks that feel like they are imposed on us than those we engage in voluntarily. A 2015 survey by the American Institute for Cancer Research reported that, according to public opinion, 10 of the top 16 causes of cancer are imposed on us by sources like pesticides on our food or asbestos or industrial pollution or food additives or nuclear power.
Finally, one more psychological factor contributes to our fear of cancer. The literature refers to it as “personification. A risk associated with an actual person—with a face and name, like us—is more frightening. We all know someone who has or has had cancer. As a patient told Holland, “So many people I know have died of cancer. I’m afraid.”
With all that psychological baggage it’s not surprising that we suffer from a risk perception gap about cancer. That the fear of cancer in some ways exceeds the risk is quite understandable. But it is ominously clear that this risk perception gap, understandable though it may be, causes immense harm both to individual health and to society. Identifying those harms is where this series heads next.