Bob Riter

Being diagnosed with breast cancer today is an entirely different experience than it was just 30 years ago. While partly due to advances in medicine, many significant changes are the result of what is termed the Breast Cancer Advocacy Movement. Looking back, you can see the movement arriving in two waves: the first wave, coming in the 1970s, took breast cancer “public” and presented the affirming notion that “It’s OK to have breast cancer: you don’t have to hide it.” There was a focus on developing less invasive treatments and on giving the patient control over treatment decisions. The second wave, coming in the 1990s and grounded in political activism, argued that, “It’s not OK to have breast cancer: we have to stop it from happening.” Earlier detection and better treatment were not enough – the goal must be the prevention of breast cancer.

Before the Movement

During most of the 20th Century, a woman diagnosed with breast cancer underwent a radical mastectomy. Decisions were made by physicians, and women often learned of their cancer diagnosis when waking up from surgery, absent one breast. A public discussion about breast cancer – especially your breast cancer – was unthinkable.

The first wave: It’s OK to have breast cancer: You don’t have to hide it.

The breast cancer movement began to take shape in the 1970s. Several important events both illustrate and helped create the early movement: 1) The book, Our Bodies, Ourselves, published in 1973 by the Boston Women’s Health Collective, provided valuable information and a sense of control over one’s own health and health care. 2) First Lady Betty Ford was diagnosed with breast cancer in 1974 and spoke about it openly. Many survivors took her cue and began talking about their own experiences, and other women had their first mammograms, believing that breast cancer may, in fact, be treatable and not a death sentence. 3) Rose Kushner began advocating for two-step surgical procedures: first the biopsy, and then surgical treatment a few days later, giving women time to come to grips with their diagnosis and to have some input into treatment decisions.

The overriding sense during this first wave was that women had the right to be active participants in their treatment decisions, and that women with breast cancer could speak out as survivors rather than stay hidden as victims.

Between the waves: HIV/AIDS and the emergence of political activism

The dominant public health issue of the 1980s was the emergence of HIV/AIDS. Political activism took on a key role as gay activists and others advocated for better treatment and increased research funding. Their activism ranged from quiet lobbying to “in your face” militancy staged to capture public attention. Breast cancer activists took notice.

The second wave: It’s not OK to have breast cancer: We need to stop it from happening

Some of the best-known national breast cancer organizations, e.g., the National Breast Cancer Coalition and Breast Cancer Action, and many local breast cancer support organizations, including the Ithaca Breast Cancer Alliance (now known as the Cancer Resource Center of the Finger Lakes), were established in the early to mid 1990s. While these organizations, especially the local ones, fostered a sense of nurturing and mutual support, their underlying message was that it’s not OK to have breast cancer, and that political activism was required to bring about change. Activists decried the lack of understanding of what causes breast cancer, and the misrepresentation that early detection is the best prevention.

An “in your face” moment occurred when the model Matuschka dramatically exposed her mastectomy scar on the cover of the New York Times Magazine in 1993. The title, “You can’t look away anymore,” aptly captured this new dynamic.

This climate of political activism is perhaps best illustrated by the dramatic increase in the funding of breast cancer through the lobbying efforts of the National Breast Cancer Coalition. These efforts led to Congress channeling more than one billion dollars for breast cancer research through the Department of Defense.

A key event during this period was the publication of Susan Love’s Breast Book in 1990. This wildly successful book was a primary source of information for an entire generation of women diagnosed with breast cancer. For the first time, individuals were truly empowered to understand their diagnosis, their treatment options, and what to expect in the future.

Accomplishments of the Movement

The changes that have taken place over the last thirty years are profound yet often taken for granted:

  • Two-step surgical procedures (as advocated by Rose Kushner) are the norm.
  • Breast-conserving surgical treatments (i.e., lumpectomies) are offered whenever possible.
  • Sentinel node biopsies have become the standard of care, reducing the risk of lymphedema.
  • The concept of peer support is widely accepted and breast cancer support groups are available throughout the country.
  • Physicians are generally more sensitive to the need for a quick turnaround of pathology reports and not letting patients unnecessarily wait for information.
  • Many hospitals have established breast cancer centers that allow patients to meet with their surgeon, plastic surgeon, medical oncologist, and radiation oncologist in the same room at the same time.
  • Advocates have a voice in the allocation of research money.
  • The most aggressive treatment is no longer assumed to be necessarily the “best” treatment.
  • Second opinions are widely accepted.
  • Environmental toxins and other potential causes of breast cancer are increasingly studied and regulated.

In some cases, the changes were a direct result of the movement. In other cases, changes would have occurred in any event, but the movement likely speeded their adoption.

The third wave of the breast cancer movement is just over the horizon. Let’s watch for it.