These Local Nonprofits are Serving Women with Metastatic Breast Cancer
From education to emotional and financial support, they help women navigate their illness.
Image by Jon Krause.
Erica Griffiths is over the whole pink thing. It’s the official color of nonprofit breast cancer groups, who offer merchandise bearing encouraging messages like “You’ll get through this” and “You got this.”
But Griffiths is in a more dire situation. She has metastatic breast cancer, or MBC. Lumpectomies, chemotherapy and radiation haven’t curtailed the cancer raging through her body.
According to Breastcancer.org, 30 percent of women diagnosed with early-stage breast cancer will develop MBC. Griffiths, 42, has been treated by a phalanx of oncologists from Chester County Hospital and Thomas Jefferson University Hospital. Doctors attack Griffiths’ tumors, yet they continue to pop up in new places.
The average life span for her form of MBC is 33 months. Griffiths, who was diagnosed in 2016, has far surpassed that. But her future is uncertain. She may not live to see her 4-year-old daughter, Isobel, graduate from elementary school, let alone high school or college.
Griffiths has known Joseph Wright since she was 6 years old, but she won’t marry her daughter’s father. This ensures her health insurance coverage if she loses her job. It’s not exactly the happy life the two envisioned, but it’s Griffiths’ life with MBC. “We’re the darker side of pink,” she says. “We don’t fit into that ‘Go pink— you can beat this’ story. But we, the MBC community, do have a story to tell.”
Many women with early-stage breast cancer aren’t eager to hear that story. “MBC is their worst nightmare,” confirms Jean Sachs, CEO of the Bala Cynwyd-based Living Beyond Breast Cancer. “Their biggest fear is that they’ll have a reoccurrence and it will be metastatic.”
That’s understandable, says Sachs—except that it masks what’s actually good news. Thanks to advances in medicine, some MBC patients are living longer. “Ten years ago, we didn’t know about personalized medicine or have treatments that were less toxic and more effective,” Sachs says. “Now, some women live for years with MBC as a chronic illness. As that happened, the MBC community became more vocal and advocated for research, awareness and support.”
LBBC answered that call with a variety of programs, including Hear My Voice, which trains MBC patients to self-advocate. LBBC also holds an MBC-specific conference, which Griffiths describes as life changing. “The conference has the best speakers—doctors, dieticians and other experts—and the sessions are very relevant and top notch,” she says.
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Griffiths has similar praise for the work being done by West Chester’s Unite for HER, which aids breast and ovarian cancer patients in the tri-state area. In 2018, Unite for HER launched Exhale, its biannual MBC-specific conference. Attendance grew so rapidly that Exhale had to relocate. It also birthed a support group for MBC patients.
Like all Unite for HER members, MBC patients receive “passports” with six months or $2,000 worth of medical acupuncture, massage therapy, nutrition, food delivery and other services. The idea is to support patients while they go through treatment. Because MBC patients will always be in treatment, CEO and founder Sue Weldon altered the passport program. “Three years ago, we committed to serving MBC patients for as long as they need us,” she says. “When their passports are used up, we renew them and keep doing so.”
To make that happen, Unite for HER has raised funds allocated to serving the MBC community. The response from donors was as big as patients’ needs, which have continued to grow. In 2017, Unite for HER served 65 MBC patients. In 2018, that number nearly doubled to 120, rising to 205 in 2019. “We heard what the MBC community was saying, and we answered as best we could,” Weldon says.
There was a learning curve, admits Weldon, herself a breast cancer survivor. “My breast cancer is very different from Erica Griffiths’ MBC,” she says. “It’s almost unfair to put us in the same category. Our diseases are different, and so are our needs.”
Griffiths continues to serve the MBC community’s needs. After her diagnosis, she formed a Facebook group that now has more than 1,800 members. Online and in person, she provides insight and inspiration. Acceptance of MBC patients is growing, Griffiths says. “And that tickles me pink.”