Call them breast cancer’s pioneers. Until they “came out,” words like breast cancer and mastectomy were not discussed publicly.
Because of this long tradition of silence, few women realized their risk or got timely treatment. No one knew much about breast cancer.
In fact, Rachel Carson wrote about the health dangers of pesticides in her book Silent Spring, keeping her own metastatic breast cancer a secret from all but her closest friends. She died in 1964, shortly after the book was published.
Betty Ford breaks the silence
In 1973, first lady Betty Ford broke through decades of silence — telling the world when she was diagnosed with breast cancer and underwent a mastectomy.
Known for her candor and forthrightness — much appreciated in those post-Watergate years — Ford gained the public’s admiration. Her courage in talking about breast cancer spurred more women than ever before to have mammograms. Breast cancer detection clinics opened nationwide and women lined up for screenings.
Ford’s legacy is her openness and forthrightness in discussing her personal struggles. Her willingness to reveal her breast cancer raised the public’s awareness of the disease and educated many women about early detection. In 1999, she and her husband received the Congressional Gold Medal for their dedication to public service and their humanitarian contributions.
Betty Ford is very much alive today, still championing her beloved causes.
Betty Rollin writes landmark book
One who took Ford’s message seriously was Betty Rollin, a well-known network television correspondent. Rollin reported on Ford’s story shortly before learning that she, too, had breast cancer.
In her landmark book, First, You Cry, Rollin wrote candidly about breast cancer — about the pain and heartache of battling the disease, about her mastectomy, and about the personal considerations involved in choosing treatment.
“Her mastectomy is handled with such humor and bluntness that you feel like you’ve lived through each moment with her,” writes book reviewer Jana Siciliano. “She is a very feminist yet feminine spirit, and it is fascinating to see her be angry at herself for caring what she looks like and stressing out over bras and other fashion questions to hide her missing breast.”
First, You Cry was published in 1976 and republished this year on Rollin’s 25th anniversary of being cancer-free.
Rose Kushner advocates lumpectomy
When Rose Kushner discovered her breast cancer in 1974, she single-mindedly began her crusade to get things changed.
At that time, a woman with a lump in her breast would have the lump removed for biopsy. If it was malignant, the breast was removed. The woman learned she lost a breast only after she awoke from anesthesia.
Kushner vehemently opposed this “one-step procedure.” She believed that a woman needed time after learning about her breast cancer diagnosis — time to find the best surgeon and to adjust to the change in her body. She also resented the haphazard stitching that left an ugly scar on the woman’s body.
Working tirelessly as an advocate, Kushner is credited as the single most important person to eliminate the one-step radical mastectomy. Later, she advocated the increased use of lumpectomy only.
Kushner also introduced a congressional bill authorizing Medicare coverage for screening mammograms — a bill that became law. It ensured that older women could get life-saving mammograms despite their low income.
Kushner received a presidential appointment to the National Cancer Advisory Board. In 1990, she lost her battle with breast cancer.
Vickie Girard champions patient's rights
In 1992, Vickie Girard was told she had six months to live — and thus began her personal campaign to educate patients about their rights.
After getting the same “terminal” diagnosis from four oncologists, Girard finally found one who offered her hope — a bone marrow transplant. However, her insurance company refused to cover the procedure, calling it too experimental.
Through money raised in her Michigan community, Girard had the procedure, which proved to be successful. She began her crusade, speaking at any event she could — Lions Clubs, PTA meetings, churches — talking about breast cancer and patient rights. She also counsels other stage IV breast cancer patients through a toll-free support line that rings in her home.
Two years ago, Girard faced a recurrence and second bone-marrow transplant. She is cancer-free today and continues her crusade.
What you can do
The ice-wall of silence has been broken. But there’s still much you can do to promote awareness about breast cancer and to get important legislation passed. These two advocacy groups are a good place to start:
National Breast Cancer Coalition — This advocacy group, formed 12 years ago, also helps individuals get involved in lobbying, breast cancer research funding, and making sure that research dollars are spent wisely.
“We didn’t like the fact that so many women had breast cancer, that tens of thousands were dying every year, and that the government wasn’t paying much attention to the issue,” Fran Visco, NBCC president and a 17-year breast cancer survivor, tells WebMD. “We wanted to make sure that women with breast cancer, like myself, had a seat at the table.”
Activism takes many forms, and both women and men can get involved, says Visco. Sending a fax or making a phone call to their elected representatives — or coming to Washington to lobby — are among the options. NBCC offers courses to educate people on the language of breast cancer research so they can be effective lobbyists and watchdogs.
“We believe very strongly that we can’t just let researchers go off and set their own priorities,” Visco says. “We need to be part of that process. We have changed the way breast cancer research is done. People can go to our web site to find out how to get involved. Our lobbying has brought billions of dollars from the defense budget alone over the past 10 years.”
Breast Cancer Action — A group of San Francisco women, all living with breast cancer, formed this advocacy group in 1991.
Their goal: “to change the research agenda, to get beyond pink-ribbon symbolism, to get researchers looking at prevention,” says Carrie Spector, a spokeswoman for Breast Cancer Action. “Treatment is certainly important, but to stem the incidence, they realized we need to know what is causing the disease, to look at the environmental links and other factors.”
When Spector talks about breast cancer advocacy, she means “giving people a chance to make meaningful change,” she says. “Our guiding principle is to organize people at the grass-roots level — to write letters and emails to Congress, to newspaper and magazine editors.”
“We give women the feeling that what they are doing is something meaningful, not just a token action, and it’s something easy they can do, not a long-term commitment,” she says.
One example: Breast Cancer Action raised awareness about breast cancer funding that was in danger of being cut. The funding, that provided for treatment of low-income and underinsured women, was indeed preserved.
WebMD content is provided to MSNBC by the editorial staff of WebMD. The MSNBC editorial staff does not participate in the creation of WebMD content and is not responsible for WebMD content. Remember that editorial content is never a substitute for a visit to a health care professional.