Imagine your doctor saying, “You have cancer.” How would you feel?
The diagnosis would be more specific: “You have Ductal Carcinoma in Situ” (DCIS) rather than breast cancer, or “You have a Gleason score 4 prostate cancer” rather than prostate cancer. But you would no doubt hear only cancer.
How would you react, even if the doctor went on to tell you that what you have is unlikely to ever grow into anything that could kill you, or even harm you, and that in the case of DCIS, it might even go away by itself? (Such non-threatening prognoses are true for some common ailments of the prostate, breast, thyroid, and even lungs — even though they are technically considered cancer.)
If you are like millions of people who face that frightening news, you would likely opt for further tests or treatments that do far more harm than the disease itself ever would have; mastectomy, prostate surgery or radiation that can cause urinary incontinence and/or loss of libido, or all the risks inherent in invasive medical procedures of any kind.
This phenomenon is so common it has names in the medical community — “overtreatment” and “overdiagnosis” — and it is being studied and quantified. In “Overdiagnosis in Cancer” doctors at Dartmouth classified “25 percent of mammographically detected breast cancers, 50 percent of chest x-ray and/or sputum-detected lung cancers, and 60 percent of prostate-specific antigen-detected prostate cancers”, as “over-diagnosed,” which they defined as:
- The cancer never progresses (or, in fact, regresses) or,
- The cancer progresses slowly enough that the patient dies of other causes before the cancer becomes symptomatic.
The doctors noted: “Although such patients cannot benefit from unnecessary treatment, they can be harmed.”
Beyond the direct harm of overtreatment, the stress caused by the diagnosis of cancer has huge health implications by itself. Chronic stress raises cardiovascular risk, weakens the immune system and makes us more vulnerable to infectious disease. It also raises the risk of clinical depression.
And then there’s what the fear of cancer costs us monetarily. Overtreatment costs the health care system billions of dollars. And the U.S. spends three times as much on cancer research as we spend researching heart disease, which kills about 20,000 more people per year.
The National Cancer Act of 1971, the genesis of the oft-repeated phrase “the war on cancer,” declared that “…cancer is the disease which is the major health concern of Americans today.” Four decades later, it still is.
A 2011 Harris poll found that cancer is the most feared disease in the U.S., 41 percent to Alzheimer’s 31 percent. Only 8 percent of Americans are most afraid of the leading cause of death in the U.S., heart disease. Why isn’t there a war on heart disease?
Cancer is a powerful word, a frightening word and as dreadful as many types of cancer truly are, the word itself can do harm too.
The medical community is starting to recognize this. In “A Plea Against The Blind Fear of Cancer” oncologist Dr. George Crile Jr., gave it a name: Cancer Phobia. Crile wrote: “It is possible that today, in terms of the total number of people affected, fear of cancer is causing more suffering than cancer itself. This fear leads both doctors and patients to do unreasonable and therefore dangerous things.” Crile’s article was published in Life Magazine in 1955.
This week, a panel of top scientists advised the medical community to drop the word cancer from the diagnoses of several medical conditions, suggesting it be replaced with IDLE, for “indolent lesions of epithelial origin.” (Their recommendations are summarized in a paper published in the Journal of the American Medical Association).
And they are not the first to suggest this. In a 2011 report to the U.S. National Institutes of Health (NIH), experts on prostate cancer suggested, “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.”
The medical community is finally recognizing what social science research on risk perception has known for years. The way we assess risk relies more on instinct than intellect. What matters most are not the facts, but how those facts feel. That leads us to worry about some things more than the evidence suggests we need to, and vice versa.
It is time to treat these perceptions with respect. They have real and serious consequences. They cause risk all by themselves. If health care providers truly believe they should “do no harm,” they need to recognize the danger of the “C” word, and treat the fear it causes like they would treat any other threats to our health.