Support Groups

For over a century women in the United States have worked to become empowered when dealing with breast cancer. In 1920 Barbara Mueller wrote letters to her surgeon, William Halsted–the father of the radical mastectomy (a standard but invasive and debilitating treatment for breast cancer into the 1970s)—seeking information and advice. Three decades later Terese Lasser started the first support program for breast cancer patients called Reach to Recovery (1952). Mastectomy patient, founder, and first-ever volunteer, Lasser popularized the program’s mission of patients giving practical and emotional support to other patients receiving breast cancer treatment.

The American Cancer Society adopted the Reach to Recovery program in 1969. Concerned that women feared the Halsted treatment more than breast cancer itself, the Society’s program focused on conciliatory relationships with the medical system and helping women normalize their postsurgical appearance. Program volunteers entered medical settings to share information about the program, but high mortality rates, social mores, and fear that breast cancer was synonymous with a death sentence still made the topic taboo for many women. Authoritative doctor–patient relationships, inaccessible language and invasive medical procedures, and the predominance of male models of disease further silenced the diagnosed and thwarted the initial viability of comprehensive support.

Women’s, patients’, and consumers’ rights movements of the 1970s were instrumental in de-stigmatizing breast cancer as well as expanding information and support networks, fostering a patient-centered approach, and advocating for social justice in health care. Organizations offered educational and assistance programs, peer-to-peer counseling, and public policy expertise as women formalized their networks and grew the social movement. Placing women at the center of advocacy helped to politicize the personal experience of breast cancer.

By the 1980s the term survivor empowered diagnosed women to take personal and collective action. National Breast Cancer Awareness Month, which the American Cancer Society started in October 1985 (with funding from the pharmaceutical company Zeneca Group PLC), gave survivor groups a new focus: screening mammography. Though some groups still focused on quality of care, access points in the health care system, research directions and public policies, screening became the touchstone of the most highly visible breast cancer activities. Awareness month provided a regular timeline for outreach.

By the early 1990s women’s organizing resulted in a successful social movement with hundreds if not thousands of community-based organizations across the nation. After two decades of advocacy breast cancer was out in the open; support systems were in place particularly for early stage women, screening programs were widespread, research programs were infused with money, patient advocates influenced research agendas and medical practice, the pink ribbon became the movement’s official symbol (1992), awareness activities such as the popular Race for the Cure were common, and breast cancer awareness became part of the American mainstream, as well as a profitable item of popular consumption.

Aspects of the American approach to breast cancer have gone global. The American Cancer Society’s Reach to Recovery was adopted in Europe in 1974. The largest U.S. breast cancer charity, Susan G. Komen for the Cure, started outreach outside the U.S. in 1999 and launched initiatives across Eastern Europe, Latin America, and the Middle East in 2007. The extent to which the American approach applies to other settings is a crucial consideration. Breast cancer as a social cause is highly contested in the United States, particularly in terms of the commercialization of the disease and the role of social movements and culture in promoting or resisting medicalization. American Influences in Poland provide an illuminating counterpoint.

American Influences: Poland

Women’s organizing around breast cancer in socialist Poland did not occur until the 1980s when Polish oncologists who had completed medical internships in the United States returned home. Physicians in Poland had been hesitant to have patient involvement in medical settings. After observing the American Cancer Society’s Reach to Recovery program in practice, two Polish specialists at the Centre of Oncology in the capital city of Warsaw (Zbigniew Wronkowski MD and Krystyna Mika PhD) started a small rehabilitation-focused support group. Comprised of only three women, the group served as a catalyst for the development of additional support groups. Physicians were still slow to accept the peer-to-peer support model that is the core of the Reach to Recovery program until the mid-1990s. At this point some breast cancer groups developed cooperative relationships with local hospitals that enabled volunteers who had completed a course in psychology to visit patients. As the practice normalized breast cancer survivors (referred to as Amazons) started new support groups. By 2010 there were over 200 Amazonian groups in Poland, with over 15 thousand members some of whom volunteer in hospital settings.

There are several obvious American influences in Poland. First, building from the Reach to Recovery model described above, voluntarism is a feature of women’s organizing. Of the registered Amazonian associations, hundreds of members have completed the course that enables them to provide volunteer patient support in Poland’s hospitals. Second, the first awareness march (reminiscent of the physical-based awareness events in the U.S.) was organized in 1996 and is now held each year. And third, like October’s Breast Cancer Awareness Month in the U.S., October 17th was declared Poland’s “Day of the Breast Cancer Fight” in 1998.

Polish groups did not develop the political bent of the American breast cancer movement. Poland has strong traditions of political demonstrations, but a feminine concern such as breast cancer does not fit neatly into the masculine character of Poland’s political activism. Thus, the Amazons did not develop a capacity to participate in public debate or take an activist orientation with regard to research or medical practice. The marches are the primary means of public engagement, but even these are aimed at transferring a value system rather than engaging in social change. The October march is even a pilgrimage to a place of religious worship. Significantly older than their American counterparts, the Polish Amazons are firmly embedded within patriarchal medicine, and they do not view this as a problem.

by Gayle Sulik and Edyta Zierkiewicz; Pre-published essay, Cultural Encyclopedia of the Breast, edited by Merril Smith. Alta Mira Press (forthcoming).

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