INSPIRED BY the successes of the AIDS political-action movement, many Baltimore-area breast cancer survivors are working hard to make their disease become as public as it is painful.
They have struggled through the lonely, private terrors of the newly diagnosed.
They have gathered strength in the sheltering sorority of other breast cancer patients.
Now they're ready to speak out to national audiences -- on a "Soundprint" radio series that begins Saturday and on the steps of the U.S. Capitol. Next week local women with breast cancer will join with others from around the country in a rally in Washington to call attention to a disease that is killing roughly 45,000 Americans every year.
"When I first got involved with this a few years ago, one in every 11 American women got breast cancer. Now it's one in nine," says Marsha Oakley, a founder of Arm-in-Arm, a Baltimore-based breast
cancer support group. "There will be 175,000 new cases of breast cancer in this country this year. What we want to know is 'Why are so many women getting this disease?'"
Oakley is a 44-year-old neo-natal intensive care nurse working at Sinai Hospital. Her Arm-in-Arm co-founder, Kay Dickersin, is a 39-year-old epidemiologist at University of Maryland School of Medicine.
Neither woman had known risk factors when they were diagnosed with breast cancer. The same holds true for most of the women in their 4-year-old support group.
"I was very typical," Oakley says. "I was 38 years old, my children were 5, 9, 11, I was working full time, and this was the first thing to happen to me that was out of my control."
She points out that the majority of American women diagnosed with breast cancer -- estimates run from 70 to 88 percent -- have no known risk factor. Arm-in-Arm bases most of its numbers on projections published this year by the American Cancer Society and derived from the National Cancer Institute's Surveillance Epidemiology End Results Program, 1985-1987.
"We're finding more and more that every woman in the United States is at risk now," Oakley says.
Like similar support groups that have become politically active, Arm-in-Arm began with the goal of bringing people together to better confront their situation. Five years ago, when Oakley and Dickersin were first introduced by a mutual friend, there were no organizations solely for breast cancer victims in Central Maryland. Arm-in-Arm became the first local group organized for and run by women with the disease in all of its stages.
"I found that the support groups that were out there did not go far enough," Oakley says. "I didn't want to go to hospital-based oncology groups. I didn't want to be in the same place where people were talking about GI cancer. I had more questions involved with being a young woman 38 years old. I wanted to be able to talk one-to-one with other women."
She had a lumpectomy and six months of chemotherapy and radiation treatment.
Arm-in-Arm member Linda Schaufele, executive vice president and sales director for Terry Precision Bicycles, had a mastectomy after two lumpectomies. Schaufele attended her first Arm-in-Arm meeting before her first surgery last year. At 47, with two grown children, she was also at no known risk for breast cancer.
"I find women in general to be very supportive. It's easier for women to talk about their emotions and to reach out," she says. "In the group we're able to cry, able to take our wigs off, able to laugh. . .it can be a very emotional experience."
"It's the only place you can put your true self forward," says
Dickersin, who had a bilateral mastectomy and breast reconstruction. "It's the only place where breast cancer isn't your identifying factor because everybody in the group is that way."
They talk about the disease as mothers and wives and single women. They weigh the pros and cons of standard treatments and of newer ones that force their bodies through such changes as temporary menopause. They share grief about losing their breasts. They share fears about recurrences. They talk about life insurance or cemetery plots. They crack inside jokes which make outsiders wince.
They tell each other how wonderful they look -- and they mean it.
"I think most of us are afraid of a loss of dignity, and these women haven't lost it. I love seeing that," Dickersin says.
She describes her own transformation: From learning to live with her deadly disease to realizing that pain and anger can also be strong enough to change public policy.
Members of Arm-in-Arm contributed to an upcoming three-part "Soundprint" series on breast cancer produced here under the direction of Moira Rankin at WJHU-FM (88.1). "Soundprint" is a nationally syndicated, award-winning public radio documentary series produced by the Johns Hopkins University.