Reducing the Harms Caused by Cancer-phobia

This is the fifth in a series of posts based on my new book Curing Cancer-phobia: How Risk, Fear, and Worry Mislead Us.

Despite popular belief, you actually can legally yell “Fire” in a crowded theater. But if anyone is hurt as a result, you could be held criminally liable. Frightening people is one thing. Frightening them into hurting themselves is another.

Yet that is essentially what doctors do when they deliver the diagnosis of some types of overdiagnosed cancers. These are diseases whose cells meet the histopathological criteria for cancer, so they still have the frightening “C word” in the diagnosis. But medical experts know from years of experience that these cancers are so small and slow or even non-growing that they are almost certain never to cause any harm. Doctors explain this seemingly good news to patients, but the formal diagnosis they deliver still includes some version of the word “cancer," and that scares people into more aggressive and risky treatment than they clinically require. Tens of thousands are harmed by these "fear-ectomies"—procedures patients understandably choose to remove something that scares them but which was highly unlikely to threaten their physical health. Some are killed.

This is what Dr. George Crile Jr recognized nearly 70 years ago when he wrote Cancer and Common Sense[i] and described a new disease, "cancerphobia," observing, “This fear leads both doctors and patients to do unreasonable and therefore dangerous things.”

Finally now, decades later, work is underway to reduce that harm.

• One part of that work is the effort to take any reference to cancer out of the diagnosis of low-risk disease. That’s already been done for the diagnosis of a common type of non-threatening thyroid cancer, for which the prognosis is the same whether the patient has treatment or not. New diagnostic language makes no reference to cancer. “We were doing more harm than good by treating these tumors in the same way that we treat aggressive cancers,” said Dr. Yuri Nikiforov, who helped champion that change. But Nikiforov, who as a medical resident in Belarus treated kids with thyroid cancer from the Chernobyl nuclear accident, said it took him and his colleagues more than 15 years to convince their more conservative fellow endocrinologists to formally adopt the change.

  For more than a decade Drs. Laura Esserman, Steve Eggerman, and many others have been fighting to do the same thing—remove the reference to cancer—from diagnoses of low-risk breast (ductal carcinoma in situ, or DCIS) and prostate cancer. But many doctors who treat these cancers are fighting furiously against that change. They worry that even though the vast majority of patients with overdiagnosed cancers do fine without treatment, a less-frightening description of their condition might lead some patients to avoid aggressive and risky surgeries, and a few might go on to die of the disease. Essentially these doctors argue that saving a small number of hypothetical lives is more valuable than reducing the certain harm that thousands will suffer when they are scared by a frightening diagnosis into riskier treatment than they need.

• Another aspect of the work being done to reduce the harms of cancerphobia is to rein in the harms caused by cancer screening, which millions of people choose though screening is not recommended for them (based on age). Some argue that screening should be limited to only those who have identified risk factors for cancer, like genetics, heavy smoking, or certain demographic characteristics. Others argue that since most cancer screening provides only modest benefit but does a lot of harm (frightening false positives, and identification of overdiagnosed cancers that then lead to fear-ectomies), any description/marketing of screening should be required to include both its benefits and its dangers. Right now, most doctors, hospitals, and companies in the cancer screening/cancer care industry, and most cancer-advocacy organizations and government programs, oversell the benefits of screening and fail to warn potential patients/customers about the harms. That is beginning to change. The influential American Academy of Family Physicians has published numerous articles like one titled “Don’t Recommend Screening for Breast, Colorectal, Prostate, or Lung Cancer Without Considering Life Expectancy and the Risks of Testing, Overdiagnosis, and Overtreatment.” The American College of Obstetricians and Gynecologists and The American Urological Association both warn their members about the harms caused by screening.
• Others are vigorously campaigning to blunt the common but outdated fear that a diagnosis of cancer is an automatic death sentence, working to make the public more aware of the problem of overdiagnosis and to broaden awareness of what medicine has learned in the past few decades….that not all cancers kill. All the major medical journals have published extensively on the problem of overdiagnosis. Many health and science journalists have covered the issue extensively in the news media.

Our fearful emotional relationship with cancer, formed over decades past, has not caught up to the progress we’ve made against the disease. That outdated fear leads to great harm. But work to reduce that harm can no more entirely cure cancerphobia than we can completely cure the disease itself. Ultimately it will still fall to each individual to make the best choice for themselves in the emotional context of their own lives, and fear will shape those choices. So empowering people to make the healthiest choice about whether to screen or how to respond to a diagnosis of overdiagnosed cancer is another important way to reduce the harms of cancerphobia.