The number of women dying from metastatic breast cancer hasn’t changed since the 1970s. Thankfully, there’s a network of committed activists determined to change that.
In March 2014, Beth Caldwell was doing a routine self-exam in the shower and found a lump. She went about her day trying to ignore it, then had her husband check after work that the lump was really there. It was, so she scheduled an appointment with her doctor who sent her for some testing.
“The radiologist couldn’t diagnose me, they need a biopsy for that, but she was making it clear that she thought I had cancer,” Caldwell says.
She was 37, and had two young children, not the usual profile for breast cancer, and in fact three years short of the age when most experts recommend that women start getting regular mammograms. The biopsy came back positive and they scheduled Caldwell for a PET scan, as well as surgery to have a port put in for chemotherapy.
“As I was being wheeled into surgery the surgeon asked if my oncologist had talked to me yet about the results of my PET scan,” she says. “I said he hadn’t and the surgeon said, ‘Oh yeah, the results came in, it’s stage 4.’ So that’s how I found out.”
Stage-4 breast cancer is also called metastatic breast cancer. Metastasis happens when cancer cells migrate from the breast elsewhere in the body, triggering cancerous growth. It is terminal and there is no cure. Some 40,000 women a year die from metastatic breast cancer. That number, despite all the pink ribbons money can buy, has not changed since 1970.
Most breast cancer advocacy groups focus on raising awareness and promoting—and paying for—breast cancer screening. They have been wildly successful in that regard, but some health advocates, particularly those focused on metastatic breast cancer—the only form of the disease that kills women—think it’s time for the movement to evolve.
“We’re plenty aware and the focus needs to shift,” says Dr. Kelly Shanahan, a patient, doctor, and advocate with METUP, which lobbies for policies and funding that support research on metastatic breast cancer. “Back in the ’70s, 40,000 people a year died—men and women—from breast cancer here in the U.S. And that’s true now as well.”
Various breast cancer nonprofits, including the Susan G. Komen Foundation, say that the survival rate for breast cancer has improved in the last 30 years. That claim is based on the fact that the number of early-stage diagnoses has increased. But Shanahan says not all of those diagnoses turn out to actually be cancerous and the numbers paint a rosier picture than actually exists.
“We’re taking all these women and adding them to that denominator so the rate of women who are diagnosed with breast cancer and die from breast cancer has gone down,” she explains. “Because 40,000 out of 3 million 40 years ago and 40,000 out of 5 million today, obviously the rate has gone down, but the number of deaths hasn’t.”
Metastasis occurs in about 30 percent of women diagnosed with breast cancer, and it comes with an average three-year survival rate. Medical researchers still have little idea why breast cancer advances to stage 4 in some women, and why others—many of them young, like Caldwell—are diagnosed with it right away. They also don’t know why a tiny percentage of women with such cancer survive for more than a decade.
Many blame the lack of progress on a combination of anemic research funding and gaps in the data collected on breast-cancer patients.
“Not enough grants are funded, it’s about seven out of 100—that’s draconian,” says Dr. Iain Buxton, a scientist who heads up the department of pharmacology at the University of Nevada, Reno. “Because we’re not talking about 93 of those grants coming from schlock scientists. Every one of them comes from a highly qualified place and person. It’s very unlikely that any Joe Schmo without the right resources and training can even get as far as an application. We need, desperately, an increase in funding for the National Institutes of Health. Research in America is like any other system, if you do not fund it, it will fail.”
While the NIH doesn’t differentiate between metastatic breast cancer funding and funding for studying breast cancer in general, METUP estimates that only about 7 percent of breast cancer research funding goes toward studying metastatic breast cancer, despite the fact that 30 percent of women diagnosed with breast cancer will have it metastasize.
Dr. Shanahan says the message that early detection of breast cancer saves lives has masked the fact that it’s still terminal in many cases, which has also made it difficult to raise funds for necessary research.
“They thought early detection cured breast cancer,” Dr. Buxton says. “But we know it doesn’t. It only gives you an option to learn more about a specific woman’s cancer because you found it early; it doesn’t guarantee an outcome.”
“It’s ‘if you catch it early everything will be fine’ and there’s this sense that it’s not terminal anymore,” says Caldwell, who co-founded METUP after her diagnosis. “That people just have their breast cancer and then they have their treatment and then they’re done and then they get to join this sorority of women with breast cancer.”
At 37, when she found her lump, Caldwell was still three years too young for the earliest suggestions for women to begin getting mammograms.
“For women who are too young for mammograms, like I was, there’s not really a chance to catch it early,” she says.
Shanahan caught her breast cancer early, too, in 2008, treated it, and had been cancer-free for five years when she got her metastatic diagnosis. She no longer had her breasts, but the cancer cells from them had been lying in wait in her bones.
“You know, you can do everything—you can have a bilateral mastectomy, you can do chemo, you can do hormone-blocker therapy if your tumor is hormone receptor positive, and it can still come back,” she says. “And that’s where the problem lies. We don’t understand why some cancers metastasize and others don’t.”
That doesn’t mean women should stop screening, or that early detection isn’t helpful, says Kathy Goulding, with Susan G. Komen. “Women age 50 to 69 who have regular mammos have a 14 to 32 percent decrease in their risk of dying from breast cancer.”
Komen has begun funneling more research funds toward metastatic breast cancer, and METUP succeeded in lobbying Congress last year to increase research on metastatic cancers by $2 million.
Still, the activists say there’s more work to be done. They’re also advocating for improvements to the federal cancer database. Currently, it tracks only early-stage and stage-4 diagnoses. There is no record of how many early-stage cancers later metastasize or how long that process tends to take.
The Metastatic Breast Cancer Project (MBC Project), led by the Broad Institute of MIT and Harvard, is working to close that gap and add more data to the research community’s understanding of metastatic breast cancer. Researchers began asking women two years ago to send in their files, blood, and tissue samples. Nikhil Wagle, an oncologist at the Dana-Farber Cancer Institute and the project’s lead researcher, says he initially was just trying to expand his research subject pool beyond Boston. But when his team put out a call for participants, nearly 1,000 patients enrolled in the first two months.
“The majority of those patients have told us about every aspect of their disease,” Dr. Wagle says. “That data is incredible. This project already is giving us the opportunity to ask questions that would have been really hard to ask if we were just looking in Boston.”
The MBC Project is sharing its data with all cancer researchers, which is important given the lack of information on metastasis in the National Cancer Institute’s SEER database, which only captures data on women diagnosed with stage IV disease right from the beginning (about 6% to 8% of metastatic patients).
“That is a huge trigger point for the metastatic patient community,” says Corrie Painter, the project’s assistant director of operations and scientific outreach. “They want to be counted.”
One of the questions the MBC project aims to answer is whether there is a difference in metastatic cancer that develops before and after the age of 40, because MBC in younger women, like Caldwell, which is increasingly less common, is poorly understood.
Caldwell expects to die in the next two to four months, leaving behind two children under 10, a devastated husband, and a committed network of advocates and friends determined to carry the torch for her and the tens of thousands of others living with terminal breast cancer.
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