Birth of Cancer Patient Advocate Rose Kushner
Rose Kushner wanted to be a physician. She studied to be a journalist. Both fields of study would serve her well when she was diagnosed with breast cancer.
Born on June 22, 1929, in East Baltimore, MD, orphaned at 10, and attending classes at the Workmen’s Circle, Rose’s desire to attend college and become a physician was thwarted by her older brothers’ unwillingness to pay her tuition. She worked at several office jobs and studied pre-medical courses at Baltimore Junior College before earning a journalism degree from the University Of Maryland in 1972.
When she found a lump in her breast in June 1974, Kushner used her journalism skills to help her deal with her illness. Taking advantage of her proximity to the National Library of Medicine, the National Institutes of Health, and the National Cancer Institute, Kushner educated herself about breast cancer and its treatment. Based on her research, Kushner insisted on receiving the results of her biopsy and making decisions about her treatment in consultation with specialists.
Although this request now hardly sounds radical, in 1974 Kushner had a difficult time finding a surgeon who would agree to her terms; nineteen surgeons refused to sign her proposed contract stipulating they would perform the biopsy but were forbidden to remove her breast without her consent. When the biopsy confirmed that her lump was malignant breast cancer, Kushner decided that she wanted a modified radical mastectomy, rather than the standard Halstead radical mastectomy, in which the pectoralis muscles and lymph nodes are removed together with the breast.
During her recuperation, Kushner began to transform her personal tragedy into a professional calling. Realizing that not all women with breast cancer had access to the resources she did, she turned the information she had gathered into articles and books about breast cancer and the controversies surrounding its treatment, which were not well publicized at the time Kushner compiled her research in Breast Cancer: A Personal History and Investigative Report, which she first published in 1975, followed by Why Me? in 1977 and Alternatives in 1984. She explained that “the point of this book is to show that we women should be free, knowledgeable, and completely conscious when the time comes for a decision, so that we can make it for ourselves. Our lives are at stake, not a surgeon’s.”
With the publication of her book, Kushner became a leading public educator on breast cancer. In response to the flood of mail she received from women desperate to receive information on breast cancer and its treatment—letters sometimes addressed only to “Mrs. Breast Cancer, Kensington, MD”—Kushner founded a non-profit referral and information service, the Breast Cancer Advisory Center (BCAC), in 1975. The BCAC offered a hotline (until 1982) and sent out fact sheets on a range of breast-cancer-related topics to those who contacted them.
Kushner was considered an authority on breast cancer not only by women seeking information on the disease, but also by Congressional committees. She pushed for various federal and state bills including the Breast Cancer Patients’ Bill of Rights, the Informed Decision Law (which mandated that doctors disclose all treatment options to patients), Medicare coverage of annual mammography, regulation of the use of radiation in mammograms, inclusion of information on the risk of breast cancer in the patient warning for oral contraceptives, and more money for breast cancer research. In June 1977, Kushner was the only non-physician appointed to an NIH panel, which adopted her recommendation to make the two-stage biopsy standard procedure. Her work also played an important role in changing the accepted protocol from the Halstead radical mastectomy to the modified radical.
Kushner’s significant contributions to society were repeatedly acknowledged with awards from the American Medical Writers Association and the American Cancer Society. In 1990, the Society of Surgical Oncology gave her the James Ewing Award for outstanding contributions by a layperson in the fight against cancer. This award in particular illustrated the significant changes that Kushner provoked in the field of breast cancer treatment, since members of the Society of Surgical Oncology had booed her in 1975 when she challenged their standard treatments.
With a self-described “streak of stubbornness, and a loud voice as well,” Rose Kushner—journalist, activist, and patient advocate—raised American national consciousness on breast cancer and helped create a national movement around the issue. Despite her fierce will and determined activism on behalf of breast cancer patients, Rose Kushner died of the disease on January 7, 1990. Her loud voice continues to echo in the work of breast cancer activists.
Sources: “Rose Kushner,” Jewish Women: A Comprehensive Historical Encyclopedia; “Rose Kushner,” Maryland Women’s Hall of Fame; Rose Kushner Breast Cancer Advisory Center.