“Breast Cancer Detection Under Budget Constraints”; Mammography Screening in Low- and Middle-Income Countries

By Marilys Corbex

The editorial in the last issue of the UICC Global News Alert (the International Union Against Cancer newsletter) is about the use (and abuse) of mammography screening in low- and middle-income countries, which presents an important lesson for advocates working with breast cancer in the Middle East.

The article reflects the growing conviction in the scientific and expert community that low- and middle-income countries should avoid engaging mammography screening too quickly as this consumes a lot of resources without benefiting many women. It also explains that advocates should be careful about pressuring their ministries of health for mammography screening as it can be counter productive to their cause. Instead, advocates should advocate for better treatment and effective early diagnosis that is readily accessible to all women of the country.

The editorial (below), plus other interesting related topics, is available at: http://www.uicc-community.org/templates/ccc/images/GNA_March%202009.pdf

Breast Cancer Detection Under Budget Constraints

By Paola Pisani, Senior Epidemiologist, Oxford University, and Joe Harford, PhD, Director, Office of International Affairs, NCI, Bethesda.

In developed countries, the debate regarding the benefits and harms due to possible overtreatment of indolent tumours discovered by mass screening via mammography continues. The health care infrastructure required for the management of suspicious or abnormal mammograms and for the treatment of breast cancer is generally present in these countries and is taken for granted in discussions.

However, the situation is different in low- and middle-income countries where breast cancer incidence is lower and where the requisite infrastructure for breast health is often suboptimal. In these settings, governments, health providers and advocacy groups struggle to develop sustainable strategic plans to control the disease, which is often the most common cancer in women, although it occurs at a lower rate than in Western countries.

These plans often focus on the introduction of mammography in emulation of early detection and screening programs that exist in more developed countries. There is no question that early detection can have a profound and positive impact on breast cancer outcomes as shown by falling mortality rates—the chief measure of efficacy. However, by focusing exclusively on introducing the detection test, health systems in low- and middle-income countries often fail to ask whether they are really ready to deal adequately with what is found through the new screening program.

Improvements in breast cancer outcomes in the United States and Western Europe began before the introduction of mass screening of asymptomatic women. In these venues, breast cancer awareness grew together with the development of comprehensive health systems that made quality care accessible to the population at large, raising expectations and trust and, eventually, demand. Breast cancer mortality began to fall in the 1960s and 1970s, in generations of young women who used health services for contraception, safer pregnancies and provision of healthcare for their children. At this time, breast cancer incidence was already increasing and state-of-the-art treatment relied largely on surgery and radiotherapy (chemotherapy and tamoxifen were to come later).

In the 1990s, mortality rates began to fall in women of all ages before all those eligible were able to receive a mammogram. The improvement in outcomes caused by the early (prescreening) movement can be attributed to the systems set up, as part of the screening policy, to manage the disease—systems that provided quality diagnosis and treatment to all breast cancer patients, most of whom still presented with overt symptoms of the disease (e.g., a palpable mass). Programs for screening asymptomatic women were implemented in an environment that already had an enhanced capacity to diagnose and treat breast cancer effectively.

In many low- and middle-income countries, breast cancer diagnosis and treatment are usually of low quality, or access to quality care is restricted to those who can afford to pay for it. In many poorer countries, only a small subpopulation of women gets state-of the-art breast health care. The introduction of mass mammography in the absence of a health care system capable of dealing with the suspicious and abnormal mammograms that are inevitable is a classic case of “cart before the horse”. Without generalised access to diagnostic and treatment services, low- and middle-income countries will see neither the early benefits of screening observed in the West nor the late ones that follow 10 years of regular screening.

In those societies where breast cancer awareness is raised, stigma is reduced and barriers to adequate diagnosis and treatment are removed, near-term improvements in breast cancer outcomes are likely to mimic those seen in the West. Health administrators in low- and middle-income countries have every reason to invest in delivering effective care to the population at large rather than investing in mammography screening, which will have a lower yield than in the West. Good management of early—yet symptomatic— tumours produces short-term, measurable reductions in mortality. Success of these programs aimed at reducing mortality and suffering will encourage funding and participation of the population. The consideration of more sophisticated and expensive programs to screen asymptomatic women is not today’s highest priority.
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Sharing Strategies on Starting Support Groups in Kuwait

Breast Care Kuwait Patient Support Workshop. Picture Credit: Carol Jabari 2009

In February, Breast Care Kuwait held a regional conference on breast cancer support groups. The two-day workshop demonstrated the importance of psychological support during cancer treatment and provided guidance on starting a group. Debby Stewart, a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program in Baltimore, Maryland, attended the conference and was kind enough to share her experience at the conference below.

"I have been a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program for nearly five years. The program started 11 years ago when Lillie Shockney, a fellow Hopkins nurse, saw a need to support women with breast cancer....

She started with five survivors who volunteered to provide support for breast cancer patients. The volunteer program grew to over 30 passionate, well trained women whose mission is three-fold: to make a difference for women newly diagnosed, to educate the community on breast cancer awareness, and to advocate and support research and breast health initiatives. I came to the Hopkins Survivor Program because I am a 30-year breast cancer survivor. I was first diagnosed in 1979 at age 25 when breast cancer was still a taboo subject and people were just beginning to talk about the disease publicly. A few brave women shared their stories in magazines and television interviews, but there were no Komen or pink awareness ribbons to spread awareness. When I first learned I had cancer, I was shocked and devastated to lose my breast, but my husband, family, faith, and friends saw me through. It was my experience with a volunteer, a survivor, who helped show me that that there is life beyond cancer. That made me want to support other women.

Dr. Nouralhuda Karmani, the Founder of Breast Care Kuwait, asked me to speak at her workshop on breast cancer survivors, which was held in conjunction with the first annual Kuwait Breast Diseases and Oncoplastic Reconstructive Surgery Conference. I accepted her invitation because I am excited to tell others about the success of the Hopkins model and share stories about the amazing volunteers with whom I work.

The first day of the workshop began with a quick breakfast and a review of plans with Carol Jabari. Carol is an American-born nurse, who lives and works in East Jerusalem, her home of 20 years. She has been involved in breast cancer issues, including establishing a support group of volunteers seven years ago—no easy task. At the conference, the two of us took turns presenting information on our respective programs. It was an honor to work with Carol who is recognized as a leader in nursing and in the U.S.-Middle East Partnership for Breast Cancer Awareness and Research.

On the second day, we presented our respective support programs to doctors and survivors. Carol began by describing the program she leads. I followed, explaining Lillie's vision and the steps she took to "prove" that the program works to people who were originally skeptical of the idea, including our radiologist.

In the afternoon, Carol and I met with the survivors again. I was pleased to see so many potential volunteers, both breast cancer survivors and family members. We formed a circle of chairs that quickly filled with women in both traditional and western clothing. Before we knew it, those in traditional dress unveiled to reveal their lovely smiles. Using microphones and earphones, our English and Arabic was translated to enable smooth communication.

We asked the group to share their personal breast cancer stories. One woman described her experience and how she was supported throughout the process by her family. Another described the importance of a survivor volunteer from the U.S. who changed her treatment perspective and gave her a more hopeful outlook. Two women had started speaking out about their breast cancer experience in their country (Saudi Arabia)—one was “breaking the silence” and the other had started a support group. Another woman shared that she cried even after treatment ended. These women wanted to share their stories, emotions, and what they had learned. What an amazing experience for me. I thought this is no different than when we gather for our retreats and support groups in the U.S. Here, a world away from mine, I once again felt the courage and witnessed strong women weaving their lives together through their shared experiences. We are women on a mission, women living life with its struggles and uncertainties, making sense of it all.

With some patience and obstacles to overcome, I suspect that this group will form into a volunteer team. They have support and direction from Nour as everyone figures this out together. It is open to possibilities. I am very excited for them. Maybe this is how Lillie and her first volunteer, Judy, felt 11 years ago. First a vision, then a movement filled with stories and passion to make a difference.
Like Lillie Shockney, Dr. Karmanhi has a vision and an unstoppable drive. The volunteers will continue to find their voices to share beyond their group to serve others. Diagnosed with breast cancer 30 years ago, I see Kuwait at a similar point. But I believe they will move rapidly into an era of awareness. As a former volunteer, I hope they find that giving of themselves is rewarding and meaningful, and that this work becomes accepted among cancer survivors and their families."

-Deborah Stewart is a coordinator for the Johns Hopkins Breast Center Survivor Volunteer Program in Baltimore, Maryland

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