There are several reasons cancer has always been associated with fear and stigma. First, in the early part of this century cancer, along with tuberculosis, was the major killer. The causes and methods of transmitting these diseases were unknown. Little effective treatment was available for either disease until the cure for TB was discovered. After that, only cancer remained clouded by mystique and fear of the unknown.
“Cancer equals death” was the equation widely accepted among lay people and physicians alike in the early part of this century. When people developed symptoms even slightly resembling those of cancer, they frequently delayed going to a doctor, thinking that “nothing can be done anyway.” Surgery was the only known treatment for cancer at that time, and it was effective only when the cancer was detected early and could be totally removed. Since cure hinged on removal of the tumor, it was important that individuals knew and were able to recognize the early warning signs of cancer.
The American Cancer Society, formed in 1945 from the American Society for the Control of Cancer, which was founded in 1913, pioneered public education to reduce irrational fear of the disease and encourage consultation with a physician when a suspicious symptom appeared. The organization’s mandate was to “disseminate knowledge concerning the symptoms, treatment and prevention of cancer.” A special division, the Women’s Field Army, was developed as a separate unit and charged with the responsibility of teaching women the signs of early breast and gynecological cancer. But modesty combined with fear prevented many women from seeking treatment for these cancers until it was too late.
The first article about cancer to appear in the popular press was published in May 1913 in the Ladies’ Horn*Journal. It contained the admonition not to procrastinate when a cancer symptom appeared, and it underscored the need for truthfulness:
Be careful of persistent sores and irritations, external and internal. Be watchful of yourself, without undue worry. At the first suspicious symptoms, go to a physician and demand the truth . . . The risk is not in surgery, but in delayed surgery.
The first slogan popularized by concerned lay people was “Fight cancer with knowledge.” This followed the popular slogan against TB, “Tuberculosis should be seen, not heard,” which referred to the fact that considerable education was needed to convince people that it was better to diagnose a visible “spot on the lung” in a chest X ray than to wait until more advanced symptoms of TB could be heard through the doctor’s stethoscope. Emphasis was placed on teaching the public to overcome this fear of disease and to seek consultation at an earlier and potentially more treatable stage.
The social stigma attached to cancer during the first decades of this century was also a considerable problem. People felt they could never reveal the terrible “secret” that a family member had cancer. The irrational myths about cancer contagion caused shame and social ostracism. Often the “secret” was kept from the person’s own children as if it reflected a family “taint” which would bring disgrace to future generations. Obituaries reflected this view by stating that cancer patients died of “a lingering illness.” Not until twenty years ago was cancer ever mentioned as the cause of death in newspaper obituaries, and even today many newspapers will avoid labeling cancer as the cause of death.
Skin and other cancers produced unsightly sores that often mimicked the lesions of syphilis, an equally common, untreatable, and stigmatizing disease of that period. Because of this similarity, people with these cancers suffered the additional burden of guilt and embarrassment of having a sexual meaning added to their disease. Even today cancer is used as a metaphor for social problems that are evil, insidious, and destructive. Susan Sontag, in her book Illness as Metaphor, describes how these social attitudes cruelly and needlessly add to the emotional burden of the cancer patient.
Given the attitudes of the early 1900s and the almost certain fatal outcome of cancer at that time, it was not surprising that most physicians chose not to tell their patients the truth when the diagnosis was cancer. Only a close family member was told in hushed tones, out of the patient’s earshot. The sense of conspiracy between physician and family added to the patient’s sense of isolation and ostracism. The custom was the same in Europe. In The Death of Ivan Ilyich, Tolstoy describes Ivan’s loneliness and frustration with his family, who pretend cheerfully that he is not seriously ill. Only his servant acknowledges his plight and talks with him about it.
Some doctors and family members were actually concerned that the patient would commit suicide if the diagnosis of cancer was revealed. While the custom has gradually changed in the United States to the point where most doctors now use the word “cancer” and reveal the nature of the disease, it has not changed in many other countries. The older custom of not using the word “cancer” continues. Clearly, a society’s attitudes and customs are strong determinants in this matter. However, experience has shown that at least in the United States, most patients prefer (and currently even demand) to know their diagnoses, prognoses, and treatment options. Cooperation with needed treatment is far easier when the patient understands what needs to be done and why. This position even has legal backing today.
Actually, the debate of telling or not has long hinged on using or not using the word “cancer.” Those working in the psychological aspects of cancer have changed the emphasis to how, when, and by whom the illness should be discussed with the patient. Whether one uses the term “cancer” or replaces it with “tumor” or “blood disease,” the important issue is that the patient be told kindly, even slowly over more than one session. But whatever word is used, the treatment and the expected benefits and problems associated with treatment must be outlined. The bottom line is that one should not tell a lie that an illness isn’t cancer when it is, since lying breeds mistrust at a later time when trust is one of the most important aspects of the doctor-patient relationship. Some persons simply do not choose to hear the word “cancer,” even when spoken. All of us are psychologically different and respond to stress in different ways. That innate difference must be respected and the doctor must know the person well enough to judge the level and amount of details the person may want to know. Some persons feel secure only with all the facts; others are secure hearing as few of the facts as possible. Both must be respected.