Metastatic Breast Cancer Network: What We Need Now
Hoping for Change
By Shana Aborn
The Metastatic Breast Cancer Network was founded in 2004 by Nina Schulman and Jane Soyer, two women living with metastatic (stage IV) disease who wanted to help others feel less alone and unheard. The group now has more than 1,000 members, and Moskowitz is carrying on its mission to increase awareness and advocacy for the metastatic community. Among MBCN’s accomplishments to date: organizing medical conferences, starting a conversation with pharmaceutical companies to expand clinical trials, establishing a nationwide Metastatic Breast Cancer Awareness Day and publishing a booklet for newly diagnosed metastatic patients.
Soyer died just as MBCN was getting off the ground, and Schulman, the driving force behind the group, died last April. Moskowitz hopes that she can uphold at least some of the enthusiasm and spirit of her predecessor. “Nina had an amazing vision; she saw what was missing,” she says. “She didn’t accept being an outcast, as so many of us do.”
Like Schulman and Soyer, Moskowitz is out to educate the public and dispel some of the myths that still surround metastatic breast cancer. “Being diagnosed doesn’t mean you’re going to die in a week,” she says. “Many of us are defying the odds and enjoying a good quality of life beyond the two-year limit. But too many are still dying too soon and too young.”
What else is on the MBCN’s wish list for 2009? Moskowitz lists some of their top priorities:
It’s hard enough for people with stage IV disease to handle friends and family who shut them out or overwhelm them with pity. Many keep quiet about their condition just so they’ll be treated normally. But what really stings is the isolation they feel from the larger breast cancer community—the one place where they expect to be welcomed and involved. “They’re terribly afraid of us,” Moskowitz says. “It’s very hard to hear that breast cancer can recur and spread.”