cancerAn exceptional essay in the April issue of Lancet explores why even healthy, asymptomatic people are terrified when they hear the word “cancer.”  Robert Aronowitz, an internist and professor of the history and sociology of science at the University of Pennsylvania, describes “cancerphobia,” a term coined in the 1950s by a Cleveland Clinic surgeon who suggested that our “fear of cancer can cause even more suffering than cancer itself . . . public health campaigns with their constant calls for surveillance and aggressive treatments combine to increase cancer fears, which in turn has led to demands for increasingly aggressive intervention and more surveillance.”  Over-testing leads to over-diagnosis and over-treatment. A study just published in the Journal of the National Cancer Institute offers disturbing numbers on the magnitude of “over-diagnoses,”  defined as “the diagnosis of a ‘cancer’ that would otherwise not go on to cause symptoms or death.”

Even when we are told that tests are ineffective or of little benefit, testing gives many patients a false sense of control over their fears. Meanwhile, cancerphobia has spawned an enormous, lucrative industry.

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The very word “cancer” inspires a degree of fear that “heart attack,” “stroke” or even “kidney failure” do not. Any of these conditions can kill. Even worse, in rare cases, a stroke can leave a patient “locked-in” — conscious and able to think, but unable to speak or move.

Yet, somehow, to many of us, the idea of cancer seems more horrifying.  Perhaps it is because the word calls up an image of something evil invading the body, and then spreading. It is a growing, living thing, crawling inside one’s own body, preying on the tissue.

In an arresting essay that appears in the April edition of Lancet, Robert Aronowitz explores why “cancer” is such a dreaded word. (Thanks to palliative care specialist Dr. Diane Meier for calling my attention to this piece on Twitter.) An internist at the University of Pennsylvania, Aronowitz is also a professor of the history and sociology of science, and he brings that knowledge to bear in his discussion of “cancerphobia.”

He begins by quoting the playwright, Ionesco:

“Told he will die at the end of the play, King Berenger in Eugene Ionesco’s Exit the King pleads:

‘Perhaps it’s not true. Tell me it’s not true. Perhaps it’s a nightmare.’

The others are silent.

‘Perhaps there’s a ten to one chance, one chance in a thousand.’

The others are silent. The King is weeping.

‘I often used to win the sweepstakes!’”

Aronowitz goes on to suggest that patients who have been diagnosed with a fatal cancer sometimes express a similar mix of denial, exaggerated hope, and desperate fear. This leads many to decide on “treatments that have little chance of helping” often “with the support of their doctors, families and friends.”

He recalls how his closest childhood friend was diagnosed in his early forties with kidney cancer. “I scoured the medical literature for cures and found an immunological treatment for kidney cancer that had led to a miraculous disappearance of lung metastases in a patient with melanoma. The next day I cornered an oncologist colleague in my hospital’s hallway and asked him about this treatment. As he dispassionately discussed the positives and negatives of the treatment, he turned his right hand into a gun and placed it to his forehead. The message was clear—we will go through the motions of this or that treatment and sustain some hope for survival for a brief period, but we both know how things will end.”

Yet Aronowitz confides, “I have never reproached myself for supporting the long-shot treatments my friend tried during his brief struggle with cancer. I and many others accord an exceptional zone of tolerance for the decisions made by patients with terminal cancer. Observers have noted that patients with severe, progressive, and ultimately terminal disease often go through different stages in which hope is gradually recalibrated from survival to relief of suffering or time with friends and family or to some other attainable outcome. It is also rational to choose a treatment that on average offers no benefit or even harm but that in some small number of cases does some good. Patients facing almost certain death from their disease might very well want to play against the odds. They have little to lose and only one or two chances to roll the dice.”

This seems to me a fair and compassionate description of the respect that we should accord a cancer patient who decides to continue treatment, gambling against long odds. I myself doubt that I would choose that route if I knew I had terminal cancer. As long as doctors could help me manage pain, I would rather spend my time with my family. But I think that each of us has a right to choose how we die. Palliative care specialists can counsel us, describing our options, and explaining that our cancer cannot be “cured.”  But in the end, a patient should have the right to make the decision.

Here I cannot help but think of a recent New York Times story about a palliative care specialist who decided to fight to the end after learning that she had breast cancer at age 31. I would add that if I were 31, I would be more inclined to put myself through any treatments available–-particularly if I had young children. My point is simply that no two deaths are alike. And on one knows how they would respond until they stand on that threshold.

“Cancerphobia”

Having affirmed the right of patients facing death to try a treatment that “in some small number of cases, does some good,” Aronowitz goes on to draw a bright line between the desperate decisions made by  patients suffering from fatal cancer and “the similar fears, exaggerated hopes, and heuristics [that] often infuse decision making in situations where death is not staring one in the face.”

As the title of his piece suggests, here we are talking about “Decision making and fear in the midst of life.” In these cases, he suggests, patients should weigh the odds and try to make rational decisions. “Healthy people deciding on cancer screening, people with risk factors for cancer deciding on preventive measures, or patients with precancerous conditions of uncertain significance or very early-stage cancer” sometimes decide “on aggressive treatments.” But “in these situations,” he points out “individuals have less reason to be desperate. Our best sense of probabilities of different outcomes, rather than long-shot gambles, should guide decision making. And because the number of people undergoing screening, at risk for cancer, or diagnosed with “pre-cancer’ is rapidly growing, the negative consequences of such decisions, the financial costs, and harm to health are having a societal impact.”

I recall a shared decision-making coach describing how, when she first meets a patient who just has been diagnosed with breast cancer, some women are totally panicked: “Just take them off. Take them both off,” they say. Given our culture’s reaction to the words “breast cancer” this is understandable.
“You have to get them down from the chandelier,” she told me. “You need to explain to the patient that she has time; the decision doesn’t have to be made today. And eventually, you can begin to talk to her about options: lumpectomy vs. mastectomy, the odds that their cancer will return or spread, family history and risk.” One of the great advantages of shared decision-making is that it gives a patient time and space to move beyond that first, terrified reaction.

Excessive Screening Feeds Fear; Eye-popping Numbers on Over-Diagnosis

Meanwhile, too much cancer screening is leading to what some physicians have called “an epidemic of diagnosis.” Too often over-testing leads doctors to diagnosis a “pseudo-disease” or a pre-cancerous condition that will never harm the patient. We now know that small tumors found in the breasts of younger women may simply disappear. We also know that PSA tests can lead to a diagnosis of “early-stage prostate cancer” that will never catch up with the patient. He will die of something else long before he experiences symptoms. And if he is treated for this early-stage cancer, he risks life-changing side effects—impotence and incontinence.

A study just published in the Journal of the National Cancer Institute offers eye-popping numbers on the magnitude of over-diagnoses, defined as “the diagnosis of a ‘cancer’ that would otherwise not go on to cause symptoms or death.”  Relying on randomized trials, Dartmouth’s H. Gilbert Welch and William Black report that about 25% of mammographically detected breast cancers, 50% of chest x-ray and/or sputum-detected lung cancers, and 60% of prostate-specific antigen– (PSA) detected prostate cancers would never have harmed the patient.  They also review data from observational studies and population-based cancer statistics suggesting overdiagnosis in computed tomography–detected lung cancer, neuroblastoma, thyroid cancer, melanoma, and kidney cancer.

To address the problem, they write “patients must be adequately informed of the nature and the magnitude of the trade-off involved with early cancer detection. Equally important, researchers need to work to develop better estimates of the magnitude of over-diagnosis and develop clinical strategies to help minimize it.”

Aronowitz raises the question: Why do healthy patients often take part in screening of no, uncertain, or minimal benefit?  The answer, he suggests, is “because they anticipate a future moment at which they are diagnosed with cancer and have to live with the regret that they had not ‘done everything’ to prevent it.  Or they dismiss evidence of no or marginal efficacy and minimize costs and harms because screening gives them a sense of control over their cancer fears.”

This is, of course, a false sense of control. Early detection does not mean that cancer will be cured. It may mean that you simply spend more years knowing that you have cancer before it kills you. Or, as Welch and Black point out, it may mean that you will be treated for cancer that never would have led to symptoms. As they say, there is a “trade-off” here. This is not an argument against early detection; but the importance of finding cancer early has been exaggerated, leading to a national obsession with testing.

Aronowitz argues that constant screening can add to “cancerphobia,” a term coined over a half-century ago, by surgeon George “Barney” Crile, Jr (1907—92). In a book titled Common Sense in Cancer (1955), “Crile analyzed what he understood to be disturbing trends in cancer decision making and suggested remedies. He argued that fear of cancer (cancerphobia)—was causing ‘more suffering than cancer itself,’ and had led to troubling patterns of practice, including overly aggressive treatments and unreasonable clinical decisions. Fear and overtreatment obscured the spiritual value of coping with illness, undermined patients’ trust that suffering could be relieved, and made survival itself the sole, legitimate goal of medicine. Crile did not use the term ‘reflexive’ but he understood that fear entered into reciprocal, reinforcing patterns with many clinical and public health practices. Public health campaigns with their constant calls for surveillance and aggressive treatments combined to increase cancer fears, which in turn led to demands for increasingly aggressive intervention and more surveillance. Doctors labeled uncertain pathological entities as ‘precancerous’ and then treated them aggressively, leading to a perception that rates of cancer were increasing, which along with mutilating treatments, led to more fear and more pressure to find and define early stages of cancer.

“How relevant is Crile’s analysis a half-century later?” Aronowitz asks. “If anything, the nexus of connections he observed has become more dense and entangled. Many clinicians and laypeople are troubled by rising rates of ‘early’ cancers and risk states, diagnosed by increasingly sensitive screening tests, followed by aggressive treatment. Public health messages that emphasize ‘one in eight women’ will develop breast cancer in their lifetime and aggressive treatments at all stages of disease elide important differences in what are disparate points on a risk—disease continuum. Aggressive treatment of patients all along this continuum contributes to increased confidence that there are technological solutions to our fears.

The continuum that Aronowitz refers to runs from being diagnosed with early-stage prostate cancer, to being told that you have liver cancer, and not long to live. In the first case, fear can drive an over-reaction that many patients will live to regret.

Crile believed that our fear of cancer “could be lessened by moderating the aggressive treatments and public health campaigns that sustained them.” A salaried surgeon at the Cleveland Clinic, “he also favored changes in the fee-for-service system that seemed to reward more and more aggressive surgery.  At the individual level, physicians might help patients with cancer to live ‘in equanimity’ and urge the unaffected to accept the possibility of cancer ‘as we do the possibility of being struck by lightning.’ It is something we should not court by taking foolish risks, but neither should we devote our lives to avoiding it.”

A coward dies a thousand deaths; a brave man dies but once. To spend our lives anticipating that we might develop cancer and submitting to repeated tests (even when medical science tells us that the tests in question carry more risk than benefit for many of us) represents a terrible waste of our time and imagination.

But “a half-century later,” Aronowitz observes, “Crile’s solutions are up against a health-care system in the USA, driven by technological advances and more entangled financial influences, which has gone further down the road of excess that he portrayed.”

The Birth of an Industry

Cancerphobia has given birth to an enormous and extremely lucrative industry. Companies such as  GE make the equipment that tests for cancer. Drug-makers peddle a costly “vaccine” for cervical cancer that represents the triumph of marketing over science. And hospitals play on our fears by targeting their ads to the “seemingly healthy.” My personal favorite is an ad that New York City’s Memorial Sloan Kettering Hospital ran in the New York Times :

The early warning signs
of colon cancer
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You Feel Great
&#
0160;             You Have a Healthy Appetite

You’re Only 50.

Drs. Steve Woloshin,  Lisa Schwartz, and H. Gilbert Welch at the very beginning of their excellent book: Know Your Chances: Understanding  Health Statistics (How To See Through the Hype in Medical News, Ads and Public Service Announcements). Note that even the media turns a profit on our terror. Drug-makers, as well as hospitals, spend a fortune on newspaper, radio, and television ads warning us that we must be on Red Alert. Cancer lurks everywhere.

In the end, Aronowitz suggests, “We may need to restrain the way we discover and define cancer and cancer risk. We should split up cancer risk and different types of cancer and not lump them together into one feared category.” Here, he points out that we have let the word “cancer” cover the continuum from runs from little risk to grave danger: “the word cancer is appended to both my friend’s metastatic kidney cancer and someone diagnosed with prostate cancer by blind biopsy after an abnormal PSA screening test.”

It is difficult to fight fear, particularly when what turns the mind upside down is simply a word–but it’s a word that has been hyped to a point that it leads to a totally irrational response. I think of how the phrase “Red Threat” terrorized Americans in the 1950s—a time when seemingly sensible people built bomb shelters in their backyards. As if a bomb shelter and stacks of canned food would save them from a nuclear bomb. They too were trying to “gain a sense of control over their fear,” and so spent far too much of their time dreading something that would never happen.

Most of us will not die of cancer. We should take reasonable precautions: We shouldn’t smoke. We should recognize the importance of Pap smears they are extremely effective. But our national preoccupation with cancer is an unhealthy obsession. The cost, to society, is too great, both when measured in health care dollars, and in terms of the needless suffering caused by over-treatment. I am afraid this is yet another example of how our medical/industrial complex has begun to overwhelm us.

– See more at http://www.healthbeatblog.com/2010/04/our-fear-of-cancer/#sthash.A60AFHBZ.dpuf

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