What’s in a Name? Redefining “Cancer”

The word “cancer” is often accompanied by other words–“dread” and “fear” among them.  Ulysses S. Grant died of throat cancer (possibly related to all the cigars he smoked) in 1885. Newspapers described his slow, agonizing demise in lurid detail (much of it fabricated), including words such as “horror” and “revulsion” in their highly sensationalist copy.[1]

wordpowerOne hundred twenty-eight years later, Angelina Jolie published a widely-read op-ed in New York Times, in which she describes her preemptive mastectomy to avoid breast cancer, which runs in her family. As she explains her decision, Jolie writes, “cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.”  Even in our technologically-advanced age, cancer still grips the public imagination as a disease of fear, powerlessness, and ultimately, death. Popular ideas about cancer appear not to have evolved much in more than a century.

A tangible manifestation of what some observers call “cancerphobia” are ubiquitous screening programs, including mammograms for breast cancer, colonoscopies for colon cancer, and PSA blood tests as an indicator of possible prostate cancer. The screening thesis is simple: the earlier cancer is detected, the sooner it can be treated.

Long-term studies indicate that early screening does lead to early detection, which has increased the overall number of cancer diagnoses. But for some cancers, screening programs have also led to widespread “overdiagnosis,” which is the detection of a cancer that never progresses or progresses so slowly that the patient dies of something else first.

Prostate cancer is no exception, and the authors of one study assert that 60% of all prostate cancers are “overdiagnosed.” [2]  Overdiagnosis leads to overtreatment, which impairs the lives of patients whose “cure” for cancer is far worse than the non-threatening “cancer” with which he or she was diagnosed.

The root causes of overtreatment are often psychological, which brings us back to words like “dread,” “fear,” and “powerlessness.” Mediating adjectives in front of “cancer,” such as “indolent” or “slow-growing,” don’t matter. The instant reaction to hearing that single word–“cancer”–is almost always, “get it out! Now!” In short, the fear of cancer can sometimes be worse than the cancer itself. Certainly, fear is a major contribution to overtreatment.

So, how can we reduce overdiagnosis in order to reduce overtreatment? One crude but efficient way is simply to eliminate screening. This was the strategy advised by the United States Preventive Services Task Force (USPSTF) in 2012, when the organization recommended the elimination of PSA screening for prostate cancer.  The USPSTF’s counsel seems to imply that a patient’s ignorance about a cancer’s existence is preferable to hearing the word “cancer,” which too often leads to rash and unnecessary treatment. Unfortunately, this strategy does nothing to help men diagnosed with aggressive cancer, as a return to the pre-PSA testing age means that these cancers will again be diagnosed only when they present themselves in their final, incurable stage. We could easily see a disappearance of the 30% reduction in prostate cancer mortality that has been achieved since the advent of PSA screening in the 1980s.

Recently, a task force appointed by the National Cancer Institute (NCI) has come up with  a more creative way to deal with the problem of overdiagnosis. Among the NCI’s recommendations is revising terminology so that “the term ‘cancer’ is reserved for describing lesions with a reasonable likelihood of progression if left untreated.”[3]  The NCI recommends that we call a slow-growing, non-life-threatening condition something else entirely, perhaps with a longish, scientific-sounding name such as “ductal carcinoma in situ.” In short, eliminate the word “cancer,” and you eliminate the fear and dread.

A man with what is today is called “low-risk prostate cancer” would  become a man with “prostatic intraepithelial neoplasia of low malignant potential.” No treatment necessary; just come back in a year for another test.

But is it really that simple?  Can we change more than a hundred years of deeply imbedded psychology by a simple change in terminology?  Can we eliminate the fear of cancer by simply eliminating the word?

For example, what happens when the patient hears he has “prostatic intraepithelial neoplasia of low malignant potential?”  Will he even comprehend the latinate phrase? Will the patient respond, “oh, that’s good news.” Or is he more likely to ask, “will that become cancer?” What does his doctor say then? An honest answer is likely to be, “there’s a very low but not impossible risk that it will eventually become cancer.”

Will that eliminate the fear and dread? Or does the patient think, “I have a condition that may eventually lead to cancer, so I better do something about it,” as the cancerphobia machinery in his head starts clanking into action? To quote Angelina Jolie, he now knows he “might be living under the shadow of cancer.”  Is the “shadow of cancer” any less ominous than actual cancer? Does he consider preemptive action like Miss Jolie and undertake a newly-available but expensive genetic test to predict the potential aggressiveness of his cancer?  And then have his prostate removed anyway?  In other words, does he head down the path to possible overtreatment regardless of the terminology?

What do you think?


[1] James T. Patterson, The Dread Disease: Cancer and Modern American Culture (Cambridge: Harvard University Press, 1989).

[2] H. Gilbert Welch and William C. Black, “Overdiagnosis in Cancer,” J Natl Cancer Inst 2010;102:605–613. Accessed 8/17/2013.

[3] Laura J. Esserman, Ian M. Thompson, Jr, and Brian Reid, “Overdiagnosis and Overtreatment in Cancer: An Opportunity for Improvement,” Journal of the American Medical Association, published online July 29, 2013, http://jama.jamanetwork.com/article.aspx?articleid=1722196. Accessed 8/18/2013.

Comments

  1. PaulC says

    I’ve had strong feelings on this issue for a long time.

    It seems obvious to me that the answer is to provide information, not to suppress or obfuscate it.

    Somehow, almost everyone knows that “a benign skin cancer” is little more than a cosmetic problem, and quite different from melanoma. Somehow, people know that the phrase “infectious disease” encompasses colds and flu and AIDS and Ebola. In other words, people have and understand the reasonably correct and accurate information about such things.

    With regard to prostate cancer, however (as well as breast cancer), the situation is quite different. Many decades ago, an administrative decision was made, I don’t know by whom, to stop reporting any Gleason sum less than 6 — or, anyway, never to report it as “cancer”. In my opinion, this was a terrible decision. We would all be so much better off if we knew that CANCER IS ORDINARY. Just as every man with normal sperm has a percentage of abnormal sperm, just as ever person with normal skin has a percentage of abnormal skin, so every person with normal cells has a percentage of abnormal cells.

    Mark my words: Within the next 20 years, improvements in detection will demonstrate that WE ALL HAVE CANCER, that we’ve all had cancer since before birth, and it’s no big deal.

    The mind-set we should foster is that we all contain a mixture of mostly good cells and a few bad ones. Always have. Always will.

    • People get colds and flu and recover … but a few people’s colds and few kinds of flu merit serious prevention and followup.

    • People have warts and moles, and it’s part of what makes skin, skin … except for a very few warts and moles that merit serious followup.

    • People have cancer. This is normal. Only the serious cancers require serious followup.

    Another prediction: The hysterical overfocus on prevention and treatment will become unsustainable as soon as a test for “pre-Alzheimer’s” is developed and validated, in conjunction with expensive but somewhat effective modalities to treat it. As those tests and modalities get better and better, eventually 25% or more of the population will be “diagnosed” with “asymptomatic Alzheimer’s”.

    Even if the general population fails to see that this will be the self-serving effort of the medical-industrial marketing complex, whose effect will be to transfer trillions of dollars from people and governments into healthcare expenditures, a limit will have been reached.

    Bottom line: We must face up to the fact that being told “if you do nothing to treat it, you might die of within 50 years” need not be cause for alarm or action.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>