What is the Human Side of Cancer? (continued)

Up until the 1970s, the word cancer traditionally was rarely spoken to the patient. Medical schools taught that it was cruel for a doctor to tell patients their diagnosis of cancer (although the family was always informed), since to give the diagnosis would take away all hope, it being tantamount to a death sentence. Since the 1970s, the trend has completely reversed. The decade of the 1970s saw the appearance of women's, patients', and consumers' rights. The post-Vietnam restructuring of American society gave greater attention (and legal sanction) to informing people of their diagnosis and treatment options and to allowing them to make an informed choice of treatment. Today, almost all patients in the United States are told their diagnosis and possible treatments. In some states, legal mandates have been imposed regarding information about particular procedures. For example, some states require that women with early breast cancer be informed of the option to have a lumpectomy and radiation instead of a mastectomy.

Many other countries still cling to the belief that the diagnosis should be withheld from the patient. However, the trend toward openness is becoming more widespread as people the world over become better informed.

Up through the 1950s and 1960s, cancer carried a stigma for the patient and the family, partly owing to the poor survival rate, enforcing a silence on all concerned. Cancer was called the Big C, because the word itself was still so scary. A taxi driver once refused to drive me to Memorial saying, "No ma'am, that place is for the Big C. I drive all the way around it." Many patients felt guilty for bringing the shame of cancer on the family. This cultural silence and stigma limited the opportunity for people even to talk with one other about their illness.

Fanny Rosenow, who became a stalwart volunteer for the American Cancer Society in New York, told me of her experience. In the early 1950s, she and her friend Teresa Lasser had radical mastectomies for breast cancer at the same time. They talked with each other and shared their feelings, but they recognized that most other women had no one with whom to talk about their surgery. Sitting at Fanny's kitchen table, the women decided they would try to reach other women to provide a forum in which women could feel free to talk about having breast cancer. Both women were socially prominent New Yorkers, and Ms. Rosenow felt that a notice in the New York Times was the best way to announce such a meeting for women with breast cancer. When she called the Times, she was put through to the society editor. Her request to place an ad to announce a meeting about breast cancer for women was followed by a long pause. "I'm sorry, Ms. Rosenow, but the Times cannot publish the word breast or the word cancer Perhaps you could say there will be a meeting about diseases of the chest wall." Ms. Rosenow hung up in disgust. However, the women persisted, and their devoted efforts resulted in what is widely known as Reach to Recovery, a worldwide support program for women with breast cancer, administered today through the American Cancer Society.

As our five children got older and I returned to work, I felt that cancer provided the ideal setting for me to study people's reactions to illness. Cancer is made up of diseases that occur at all stages of life and in all parts of the world, where attitudes are vastly different. Cancer may be cured, become chronic, or lead to death. To understand how people in these different situations cope could be a basis for helping people cope better with the uncertainty of a life-threatening illness. This interest led me to do research at Roswell Park Cancer Institute in Buffalo and then at Montefiore Hospital in the Bronx, when our family moved to New York.

I came to Memorial Sloan-Kettering in 1977 to begin the first full-time psychiatric service in a cancer research hospital. When I first joined the staff at Memorial, many of the oncologists, couldn't understand why they might need someone from psychiatry, because "these people are really sick." My colleague, Dr. Mary Jane Massie, a psychiatrist, and I initially shared a small office that had in it a card table and two chairs. But we spent most of our time on the medical floors talking to patients, families, nurses, and social workers and making rounds with the medical teams. The patients were our teachers, sharing their experiences and exploring with us the personal meaning that cancer had in their lives. We learned how to identify those who were distressed, who needed support and help. We began to understand what the common problems were and how to help people deal with them. The human side of cancer began to be more actively addressed in our cancer center.

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