WALKING THE WALK

For those who do choose to come out, the process can be slow, as it has been for longtime breast cancer advocate Randi Rosenberg. In 1998, at age 32, she was treated for early-stage breast cancer; eight and a half years later, the original cancer returned and spread to the bone. Since then, she has disclosed her diagnosis to only a handful of people in each area of her life.

As a founding member and former president of the Young Survival Coalition (YSC), she was initially concerned about how the news might affect fellow breast cancer patients, although the group does address the needs of young metastatic women. “Having spent 10 years talking about breast cancer awareness and survivorship in a very public way, I sometimes feel that I’m dimming the beacon of hope for many who look to stories like mine for long-term positive outcomes,” she says.

But Randi believes in “walking the walk.” Eventually, she realized that in order to help women live fully with stage IV disease, “I cannot do it without talking about my situation and having people see me in the flesh.” Recently, she has begun to tell other breast cancer patients that her cancer has progressed. “I think having an advocate’s-eye view from early stage to mets is important for other patients to hear,” she says.

She hopes her candor will encourage other women with metastasis to feel more comfortable sharing their own stories. Still, until recently, Randi didn’t feel ready to share her updated condition with the press. “I want to be able to decide when and where it is appropriate to discuss,” she says.

OUT IN THE OPEN

On the other end of the spectrum, the Rev. Pamela J. Breakey, of Dowagiac, Michigan, says that keeping quiet about her 2004 diagnosis was never an option. The 62-year-old Episcopal priest believed that as a spiritual leader, she was obligated to tell her congregation. She worried that her flock would be so overprotective they wouldn’t let her continue as their pastor; on the contrary, the other cancer patients in her church took her under their wings and shared more about their own journeys than they had before.

Breakey says the decision to reveal a serious disease is a personal one; in her case, she found it easier to live openly than to carry such a big secret. “[I think that] when we don’t disclose, we cut ourselves off from potential sources of support,” she says.

But those who don’t tell friends say they can find comfort from other metastatic women in local support groups, through the Metastatic Breast Cancer Network (MBCN), on message boards such as bcmets.org and on hotlines run by groups like SHARE and Breast Cancer Network of Strength (formerly Y-ME).

Some groups, like MBCN, work toward greater understanding and acceptance of women living with metastatic disease. Once the public comes to acknowledge breast cancer in all its facets—a disease that many survive, in early stages, but that others live with only until their treatments stop working—then those who stand up to cancer every day may feel more comfortable and accepted by everyone in their lives. “We can be energized and empowered,” Randi says. “We can be strong, vibrant, brave, productive and—dare I say—sexy.”