Taking Charge of Breast Cancer

3. Patients and Doctors as Partners

THREE Patients and Doctors as Partners When Joann, a thirty-four-year-old mother of three children under age seven, learned she had breast cancer, she was not surprised at being diagnosed so young. Her family had a history of breast cancer, including Joann’s mother, her mother’s sister, and her grandmother, and so she had long assumed she had inherited the risk.1 At the time Joann discovered her lump, her mother was terminally ill with lung cancer, having survived breast cancer for twenty-one years. When her mother died a week later, Joann had told no one about her own lump; she waited until after the funeral. Joann was so confident that she had breast cancer that, prior to testing, she gave the surgeon her diagnosis. When he replied, with full medical authority, “You don’t tell me you have breast cancer, I tell you,” Joann responded, “I’m telling you. I know what cysts feel like, and I have never had anything like this.” 63 Joann was unusual in her certainty that her lump was definite evidence of breast cancer. For most women, such a diagnosis is not legitimate until officially confirmed through a biopsy. Science, not feeling, determines whether or not they have breast cancer.2 Dorothy Smith has argued that, in contemporary society, ways of knowing that formerly were grounded in everyday experience have become increasingly replaced by “objective,” quantified facts and that social scientists have participated in creating this worldview.3 Most women have no scientific knowledge about breast cancer in their everyday experience. Some have memories about the deaths of loved ones, but most have no experience in the diagnosis of the disease. Joann was unusual in that her everyday experience included some scientific training about breast cancer. She did not believe that she was just relying on intuitive opinion. Rather, she believed that she had the medical competence to distinguish a malignant lump from a cyst. I talked to Joann in the conference room of the breast cancer support organization where she worked. A tiny and intense woman, whose life since her treatment ended had revolved around helping women get help and information throughout diagnosis, treatment, and post-treatment, Joann had heard about my work at a conference. She contacted me and asked to be in my study because she believed others would benefit from hearing her story. She wanted to testify to others about beating the odds so that they would learn how to help their doctors overcome cancer. Her narrative was similar to those of other women who looked for meaning in their illness experience. Presenting herself as someone who had not become a victim, in spite of life’s raw deal, she was upbeat throughout her interview. Her heroic story of fight and courage was like that of many of the biomedical experts discussed in this chapter. These women believed in biomedicine, but they also believed they should be responsible for their health and their recovery from illness. Deborah Lupton, in her study of “consumerist” and “passive” patients, described consumerists as challenging the authority of doctors and becoming experts on their medical conditions. Such women were likely to be well-educated professionals, as were Joann and most of the other women in this group.4 Joann’s mother had taught her to expect a breast cancer diagnosis at 64 P a t i e n t s a n d D o c t o r s a s P a r t n e r s some time in her life. Beginning with Joann’s sixteenth birthday, her mother had sent her to the gynecologist every six months to “learn to do a proper breast exam, when all my peers were going . . . to get a prescription for the pill for birth control.” Instead of reacting to her diagnosis with shock and panic, as did many of the women described in the previous chapter, Joann was “kind of glad to hear it happen, because I was waiting for the anvil to drop.” Prior to diagnosis, she had intended to undergo a prophylactic double mastectomy when her children were a little older, because she thought that this would lessen her chances of the disease. Even though she was careful to present herself as in control of her treatment , looking back, Joann momentarily became somber. She had been prepared for the bad news, but the diagnosis was still...