By Kathy LaTour

The call came on a Friday afternoon in October 1986.

“Your mammogram came back highly suspicious,” said the voice of my OB/GYN, who the year before had delivered my daughter Kirtley.

“What does that mean?” I asked, new to the jargon that would soon become my second language.

“It means you probably have breast cancer,” she said.

I was 37 years old, a new mother, a journalist, and a feminist with a master’s degree in communication.

What began that day was a journey that would be unique to me—and yet shared with thousands at the same time. Caught up as I was in my own issues of surgery, chemotherapy, and living, I didn’t realize until a few years later that as I began my journey that day in October, thousands others were beginning theirs, and eventually we would stream together, first in our neighborhoods, then in our communities, and eventually down Pennsylvania Avenue, where, in 1993, we would deliver 2.6 million signatures to President Bill Clinton demanding a national strategy to end the breast cancer epidemic. The figure 2.6 million had been derived as the number of women in the country who had breast cancer—with one million not yet diagnosed.

As I walked with women from around the country that day in Washington, I was joined by my friend and my daughter’s godmother, Diana Rowden, who was newly diagnosed and who would go on to serve as chairman of the board of directors of the Susan G. Komen Breast Cancer Foundation.

We were humbled by the numbers that day and the symbolism of this disease—we were linked by a universal scar that stretched from coast to coast. It was energizing in a way that neither Diana nor I had expected. We returned home with a greater sense that we were part of the emerging breast cancer “movement.”

Looking back now, we were most certainly on the crest of a wave of breast cancer “advocacy,” women who were no longer satisfied to be cancer “victims,” but instead would begin advocating for themselves at every level.

Locally they would advocate for a voice in their treatment; in their community they would advocate for better screening and treatment for their underserved sisters; and nationally they would advocate not only for more research dollars but also for a seat at the table where it would be determined how those funds were used.

Those of us who were part of this wave had honed our activist skills during the 1960s and ’70s with social issues such as civil rights and the women’s movement. We would not be acted upon; we would act, mobilized for action and an end to this disease before it became our daughters’ issue.

Soon it became clear that breast cancer was no longer going to be said in a whisper; it was going to be addressed openly—until everyone knew that this disease existed and that we demanded more money and more energy toward its cure.

Women became energized at every level against breast cancer. In Dallas, Diana and I became a part of the creation of a remarkable collaboration between physicians and survivors to create a nonprofit organization that would provide diagnosis and treatment for underserved women. The Bridge Breast Center was founded in 1992 and received funding from the Dallas Affiliate of the Komen Foundation, only one of the growing number of national organizations that were emerging around the disease.

I would join the board of the National Coalition for Cancer Survivorship. Diana would continue with the Komen Foundation, the nation’s largest private funding source for breast cancer research and community outreach programs.

Indeed, the decade I was diagnosed gave birth to a number of organizations, established by women who would be the midwives of this emerging movement: Rose Kushner, Nancy Brinker, Jackie Winnow, Eleanor Pred, Susan Hester, Andrea Martin, Diane Blum, Susan Love, MD, Jane Reese-Coulbourne, and Fran Visco. These women took the lead to organize around issues of treatment, education, research, empowerment, and advocacy.

Emerging from their determination came Y-ME National Breast Cancer Organization, the Susan G. Komen Breast Cancer Foundation, the Women’s Community Cancer Project, the Breast Cancer Fund, The Mary-Helen Mautner Project for Lesbians with Cancer, and the National Alliance of Breast Cancer Organizations.

Some of these groups formed an alliance in 1990 called the National Breast Cancer Coalition, which with a number of other cancer advocacy organizations has in the past 12 years fueled an increase in government funding for breast cancer research from just over $100 million to more than $800 million in 2002.

It was the National Breast Cancer Coalition that brought us to Washington, D.C., that day in 1993. Today, a decade later, the movement has matured. Those women who marched in the streets of Washington, D.C., are now in the halls of Congress lobbying, meeting with lawmakers, and speaking with authority on the need for research funds and their uses.

While the goals of the individual organizations may vary, their passion does not. And yet, we have so far to go. Progress has been agonizingly slow in finding new treatments. While early detection and mammography have become more widespread, many women still are not screened due to lack of funds or insurance that won’t cover the costs. Quality of treatment still varies, and it’s unacceptable that all segments of our country cannot find and receive the same quality of care.

So where to now? My hope is that new advocates will step forward to continue the growing collaboration between those of us who want a cure and those who can bring us the money and direction we want: politicians, researchers, clinicians, and bureaucrats. Breast cancer is joining with other cancer organizations to create a unified voice for cancer.

The Cancer Leadership Council was formed in 1993 by eight cancer patient organizations. Today, 29 organizations take part and set the agenda based on current issues in the patient community. On the local level, the community level, and the state level, those who have experienced cancer are getting involved, speaking out, and making a difference.

Today, Diana and I continue in what has become our life’s work. Diana now holds a staff position at the Komen Foundation as the Affiliate Services Manager, and she has one of those seats at the table on a patient advocacy committee, an advisory committee on treatment trials for the National Surgical Adjuvant Breast and Bowel Project.

I have managed to turn an avocation into a vocation and now oversee a new undergraduate emphasis in nonprofit management at Southern Methodist University, where I am on the faculty in Corporate Communications & Public Affairs. In addition, I sit on the board of Gilda’s Club North Texas, and I am the consulting senior editor of CURE, where I can combine my love of journalism and my desire to provide the country with the latest in cancer updates, research, and education.

I think the importance of advocacy is most elegantly stated by Larry Norton, MD, a breast surgeon at Memorial Sloan-Kettering Cancer Center in New York.
Dr. Norton commented in a 1998 journal on advocacy: “The growth of cancer advocacy has another consequence: it brings patients and therapists closer together. After all, the distinction between the one being treated and one treating is artificial in that we are all potential patients and potential healers. The physician or nurse or scientist brings expertise in science and medicine to the clinic, but the patient brings expertise in his/her own life. Medicine, therefore, is always a collaboration; advocacy in the clinic is just the tangible manifestation of that collaboration in the research setting.

Advocacy is indeed the completion of the comprehensive team. It is an expression of our unity of purpose as humans dedicated to the eradication of human suffering. It is the realization that we are all in this together.”