Inside the Institute

7/22/2008
Inside the Institute
DFCI team teaches care in Russia

There is no word in Russia for cancer survivor, explains Yelena Wetherill, PhD, a postdoctoral fellow in Cancer Biology at Dana-Farber and a native of this vast country where 50 percent of the women diagnosed with breast cancer die from the disease. The closest translation refers to someone who lived through a war. Wetherill and Martha Hayward, a breast cancer survivor and member of the Adult Patient and Family Advisory Council here, set out to change that.

The two women recently returned from Irkutsk, a 400-year old city in central Russia, where they organized a three-day symposium on breast cancer education, prevention, advocacy, and survivorship, attended by clinicians, community leaders, and patients, one of whom found kinship with Hayward.

“Natasha is about my age, 52, and her kids are my kids’ ages,” says Hayward. “She underwent mastectomy for a stage 1 cancer because she couldn’t travel 200 miles for chemo at the nearest cancer center, and she had not been taught how to do a self-exam to monitor for cancer in the other breast.”

Hayward uses Remember Beads™ – a string of four pearls of different proportions that she created, to represent the size of tumors at various detection stages – to teach women to check for breast tumors; a perfect tool for women like Natasha. In fact, about 45 symposium participants caused quite a stir as they walked across the Irkutsk State University campus, where the event was held, proudly wearing the necklaces.

These generally reserved women explained to curious onlookers that the beads represented breast cancer prevention. Bordering on the clear blue Lake Baikal – deepest in the world – Irkutsk, located in southeastern Siberia, is known as a rich cultural center for poetry and art. Russians, however, value privacy, says Hayward. “Even though the women are sophisticated and well educated, they are uncomfortable talking about their bodies. Women go to the doctor alone, and don’t even know if their mothers died of breast cancer.” Health care, including mammography and cancer treatments, is free in Russia, and breast cancer drugs such as tamoxifen are available. Still, mammography centers are scarce, and cancer care is often far away. Most women do not seek help until their cancer is already advanced, and the most common treatment is mastectomy.

Last year, Wetherill organized a similar symposium in Irkutsk, funded by the Susan G. Komen for the Cure. This year, Hayward joined up, Dana-Farber’s Women’s Cancers Program provided the funding, and Magnolia Contreras, MSW, MBA, director of Community Benefits, lent expertise to the plans even though she didn’t go along on the trip.

Fast friends

When serendipity brought Wetherill, Hayward, and Contreras together, they became fast friends. Wetherill had read Hayward’s story in Side by Side, Dana-Farber’s quarterly newsletter for patients and families, in which she describes her experience with breast cancer and her mission to educate women about the importance of early detection. “I thought the beads would support my work because they transcend language,” recalls Wetherill. “As soon as I met Martha, I knew we were meant to work together.”

Later, Wetherill and Hayward heard about a talk Contreras had given at a Dana-Farber event, and decided to seek her guidance. “Community benefits can take place here in the Boston area or as far away as Siberia,” says Contreras. “I had examples of similar work to help address some of the issues women in Irkutsk are dealing with. The goal was to leave a local group – the Angara Women’s Union – with the tools to build their own breast cancer community education program.”

The seeds sown during this grass-roots effort will flower next fall, when 500 women plan to put aside their privacy and march through Irkutsk wearing the beads.

View the article in Dana-Farber's publication Inside the Institute.

Read more about Martha Hayward’s beads: www.dana-farber.org/martha-beads.