By Elizabeth Cloutman

Breast cancer network provides education, support and advocacy

Elaine Dornig had a full life as a wife, mother of three daughters and worker with at-risk students at Los Altos High School. Then, in October 1989, life as she knew it suddenly changed when she was diagnosed with breast cancer.

Dornig, a longtime Los Altos resident, successfully navigated the long journey through a mastectomy, chemotherapy and radiation and remains cancer-free. However, like many who have experienced a life-threatening illness, she was deeply affected by the experience.

After returning to her job for a year, she realized, she said, “it was time to change gears … Breast cancer is the most common cancer in women. The thing that impressed the need to me was a newspaper article that referred to the 57,000 Americans who had died in the Vietnam War … In that same time frame, 455,000 women had died of breast cancer … I had to do something.”

Dornig left her job to become a volunteer for Bay Area Breast Cancer Network in 1990. She has been the organization’s executive director, an unpaid position, since 1993.

For her years of dedication, the Women’s Fund of the Santa Clara County Office of Women’s Advocacy last month named Dornig as one of its nominees for the Women of Achievement awards. However, more important to Dornig is that her organization has been able to make a difference in the lives of breast cancer patients and their families.

Bay Area Breast Cancer Network is a non-profit, grass-roots organization committed to finding the cause, prevention and cure for breast cancer. The organization offers a hotline, support groups, a newsletter and educational events. In addition, it is affiliated with state and national organizations to affect public policy and funding.

Sheila Swanson and Beth Ellis founded the organization in 1990. Soon other breast cancer patients and survivors joined Bay Area Breast Cancer Network, and it became a non-profit organization in October of that year.

In May 1991 members of Bay Area Breast Cancer Network joined women from three other organizations around the state for the first Mother’s Day Rally for Breast Cancer at the state Capitol.

These groups had formed the California Breast Cancer Organization, which now has nine member groups.

The following week, representatives from the state organization convened with other groups from around the nation to form the National Breast Cancer Coalition.

The national coalition began a campaign to educate and lobby Congress for federal funding. “By 1993, we’d gone from $42 million to $300 million in breast cancer research grants,” Dornig said.

Dornig said the most important service of Bay Area Breast Cancer Network is to “educate and nurture women on the breast cancer journey.”

The organization offers several support groups that meet at its San Jose headquarters. (Volunteers refer those living outside the Bay Area to other support groups.) The Primary Diagnosis support group assists women facing diagnosis, surgery and treatment, giving them a place where they can share their feelings in confidence and find support and inspiration from others.

There is a transition group for those who have completed surgery and treatment but want to remain connected or get involved with the organization. “There’s a lot of euphoria, but these women ask themselves, ‘Where do I go from here?’ or ‘Why don’t I feel more joyful?’” Dornig said.

The Recurrence Diagnosis group aids those who must face breast cancer that has returned or spread to other parts of the body.

The Couples Workshop is a six-week series in which a couple can share with others their fears, anger and concerns about sexuality. “Breast cancer affects the whole family,” Dornig said.

The newest program is a monthly book group for women who have completed surgery and treatment. The group focuses on fiction.

Bay Area Breast Cancer Network hosts community events, such as its Open Door education forums and its speakers program.

Advocacy at the state level effected a change in state law. Women can now designate their gynecologists as their primary physicians. Advocacy at the federal level has brought more federal grants for medical research. Dornig noted lay women now sit on the advisory boards of organizations that grant funds for breast cancer research.

Bay Area Breast Cancer Network is located at 4320 Stevens Creek Blvd., Suite 185, in San Jose. For more information, call the hotline at (408) 261-1425 or logon to www.babcn.org.