PATH and survivors helped break the silence about breast cancer.
Improving health care for women with breast cancer
On a crisp October day in 2001, women of all ages and many of their families gathered in the streets of Kyiv, Ukraine, for the first ever March for Life and Hope. The walk through downtown culminated at the city center, where marchers gathered for presentations and music—a celebration of life. Organized by and for breast cancer survivors throughout the country, the event was a visible next step for a movement that had already improved the lives of hundreds of women with breast cancer—and would continue to grow.
It all started with a three-year project conducted by PATH. In 1997, we received funding from the US Agency for International Development to improve health care for women with breast cancer. The specific goals were to increase the quality and cost-effectiveness of breast cancer services—for example, mammography, clinical breast exam, and treatment for breast cancer—increase utilization of the services, and improve quality of life for women experiencing the disease.
Women walked alone
At the time, breast cancer patients and their doctors faced a number of challenges. The health system was struggling to provide even basic services, so there weren’t any organized screening programs for early detection of breast cancer. Mammography was, and still is, expensive (women pay for their own film), and high-quality mammography is only available in a few cities. Without early detection, many women are diagnosed in the late stages of their disease, when treatment options are limited—usually to radical surgery and radiation and chemotherapy.
Attitudes toward breast cancer were also problematic. Doctors often did not inform women of their diagnosis, usually out of a desire to protect them. Said one doctor, “I don’t want them to give up hope. They must struggle if they are to survive this disease.”
Women found it difficult to ask questions about their condition, because that meant challenging doctors’ authority. Psychological support was available, generally in a one-on-one situation, but hospital-based or community-based support groups were almost unheard of. Women with breast cancer were very much alone.
Up-to-date information, new ideas
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PATH’s first step was to furnish patients and doctors with accurate, up-to-date information. We developed a number of patient-education materials to help women understand their disease and participate in their own care. Technicians received training on mammography techniques. Doctors received training on clinical breast examination, so that they could begin regularly screening their patients, and on modern treatments for breast cancer, including breast-conserving surgery.
We also introduced the idea that women could help each other survive the disease. Afraid or ashamed of having breast cancer, women were not accustomed to talking about it. Yet, early on in the project, a small-group discussion tapped a great need for women to speak openly about their experiences.
In 1999, PATH invited two American breast cancer survivors to take part in a series of seminars with breast cancer patients, survivors, and medical personnel. These seminars helped inspire survivors to start organizing support groups. One seminar participant described the experience: “We were born a second time and understood that, despite everything, we are still women . . .”
A life of its own
After the seminars, survivor groups began to form all over the country. In 1999, no survivor groups existed, and women had no where to turn for the understanding and inspiration of those who had survived. In 2001, there were survivor groups in 15 cities across 12 oblasts (provinces).
This aspect of the project was so successful that PATH sought additional funding and opportunities to train members in providing support to peers, staffing hotlines, fundraising, and directing an organization. We wanted to help the groups to solid, sustainable footing.
By early 2005, with support from the Jewish-American Joint Distribution Committee, a national association of survivor groups was formed, and there were survivor groups in 22 cities, representing nearly all of the country’s 25 oblasts. Breast cancer support groups throughout Ukraine now provide regular opportunities for women to receive the emotional support that contributes to their healing. They also maintain ties to the medical community and host meetings with breast cancer experts.
In addition, support group members have become a regular part of the health care team—along with surgeons, oncologists, and radiologists. Survivors help newly diagnosed women deal with their fears and guide them through treatments and surgery, reassuring them that it is possible to not only survive cancer, but to thrive. Although doctors were initially averse to working with breast cancer survivors, they now solicit their help, especially in convincing women to seek necessary treatment.
Beyond being sustainable, PATH’s breast cancer project in Ukraine took on a whole life of its own. In 2001, at the first March for Life and Hope, people with breast cancer and the medical community were still learning to acknowledge the disease. By the fourth annual march in October 2004, survivors were openly sharing their experiences. Their steps had carried them a long way.
Photos, from top: PATH/Amie Bishop, PATH/Mike Wang.