Susan Niebur is a 38-year-old mom and astrophysicist who lives near Washington, D.C. In most mornings, lately, she chats with her husband as he drives to a medical center for her near-daily radiation treatments. She has metastatic breast cancer (MBC) that's spread to her spine and other bones.
It's mid-October, and Niebur's just living her life, day to day, as fully as possible. "I've had breast cancer for 4.5 years," she reflects. "While dealing with surgeries, chemo, radiation and pain hasn't been a walk in the park, I sure would like to be here for another 4.5 years -- until my kids are 9 and 11." She adds: "At this point, it seems like a long shot without new research for metastatic disease."
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The number of women surviving with MBC is uncertain, experts say. Most estimates for the U.S. women range between 150,000 and 250,000. The precise number is hard to pin down, says Musa Mayer, author and advocate. Over a decade ago, she helped to found BCMETS, an online community for women with advanced breast cancer.
"Knowing the prevalence of metastatic breast cancer is crucial," she says. "If women with mets are going to count, they must be counted." According to her report, 22 percent of women with newly-diagnosed, distant mets will live for more than five years, and approximately 10 percent will live for 10 years or more. The calculation is complicated by variable prognoses of women with distinct breast cancer subtypes, she says.
This matters for research, and for knowing how to treat women who have distinct forms of the disease -- if the malignant cells are HER2+, ER+, PR+ or if they're triple negative or basal-like, and if the patient has BRCA1 or BRCA2 mutation. Each genomic type needs be parsed for drug resistance, and for prevalence among women with MBC.
Mayer is encouraged by new treatments that have become available over the last 15 years. "These may have somewhat enhanced length of survival," she wrote. "In the past year, two new drugs have been approved -- Halaven (eribulin) and Xgeva (denosumab) -- and others are in clinical trials.
"But despite the number of treatments for metastatic breast cancer that have been approved in the last 15 years or so, cure -- or even extended remission -- remains elusive," she says. "For most women with metastatic breast cancer, survival has only been extended by months, not years," she emphasizes. MBC is woefully under-researched, she says. "It's time to make a change."
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"Who will you remember on October 13?" asks ihatebreastcancer blogger Katherine O'Brien. At 45, she's had metastatic disease since 2009 and writes, tirelessly, about the condition. Her views were molded early by her mother's death from inflammatory breast cancer in 1983.
She and others have promoted this day as National Metastatic Breast Cancer Awareness Day, which was officially recognized by the U.S. Congress in 2009. Although Congress has not renewed the resolution, advocates note the day. In New York State, the legislature voted to commemorate today, officially this year, as Metastatic Breast Cancer Awareness Day.
"Social media is making a difference," O'Brien considers. Many breast cancer bloggers are helping to increase MBC awareness. "It's not something that will change overnight, but we are being heard."
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Niebur is encouraged by the changing conversation about breast cancer. "Metastatic women are speaking up via Twitter, Facebook and blogs," she says. She's been writing on her experiences at Toddler Planet -- a blog she began before her initial diagnosis of inflammatory breast cancer and, more recently, Mothers With Cancer.
"When women become metastatic, they feel different," she reflects. "We all wish we could be that woman who can stand up and say 'rah, rah,' but that doesn't work when you catch the disease as a metastasis. It doesn't address some of the issues we face, like getting treatment for the rest of your life," she says.
Last spring, she attended a conference sponsored by the National Breast Cancer Coalition. That organization's 2020 deadline inspires people, she indicates. Women with all faces of the disease are more vocal than in previous years. "Now, there's a group of people who are standing up for metastatic breast cancer," she notes.
"Don't count us out," she says. We're here, too."