Better Data Will Improve Outcomes for Women Living With Metastatic Breast Cancer
While breast cancer can’t always be cured and can return as metastatic disease, advocating for more data collection and analysis will result in better outcomes. Photo: Galina Zhigalova / Getty Images
October may be Breast Cancer Awareness Month but there are few, if any, older Canadians who aren’t already aware of the disease — or that one in eight Canadian women will develop over her lifetime.
This is the month when breast cancer pink competes with Halloween orange for dominance. In the Ontario city of Penetanguishine, they’re even slathering pink paint on orange pumpkins.
Metastatic Breast Cancer
The ubiquitous “think pink for breast cancer” promotion doesn’t go down well with Nathalie Baudais, who is more aware than most about breast cancer.
Now in her 40s, Baudais was diagnosed with breast cancer when she was 29. Because she had been identified as having the BRCA 1 mutation, she’d been closely monitored and wasn’t surprised by the diagnosis.
Two years later, it returned and this time the diagnosis was metastatic breast cancer, a form of the disease that can spread to another part of the body, most commonly the liver, brain, bones or lungs.
Baudais’ cancer came back 18 months later, this time in in her lungs. Since 2013, she’s had no evidence of disease and is not receiving treatment.
MBC Patients “Isolated and Misunderstood”
Metastatic breast cancer (MBC) has not only been an ordeal for Baudais, it has also become a cause. She’s a board member of Rethink Breast Cancer’s Advisory Committee for Metastatic Breast Cancer, which calls for “making the MBC voice and experience count in more places. In data collection. In clinical trials. In research. In the community.”
Five years ago, the Fred Hutchinson Cancer Center in Seattle declared: “In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood.”
Right now, according to Rethink, there isn’t even a count of how many active MBC cases there are in Canada. “Stop with the pink washing,” says Baudais, a transportation engineer with the city of Saskatoon, “and start actually doing something.”
Baudais and her Rethink colleagues are advocating for more funding of real-world data, analysis and awareness about metastatic breast cancer. They acknowledge that data isn’t sexy. But analysis of the data collected about MBC is the foundation on which research, treatment and outcomes are formulated. And she feels that the foundation for metastatic breast cancer knowledge has never been properly constructed here in Canada.
“Not many people are funding that work,” agrees medical oncologist and outcomes researcher Dr. Winson Cheung, who also serves as director of Health Services Research for Cancer Control Alberta. “It takes resources, money and time.”
Funding isn’t the only problem. Each province collects data differently and manages privacy concerns differently, says Baudais, “and researchers have to jump through hoops to get access to the data. The result is that we don’t even really know how many cases of breast cancer have advanced to metastatic in Canada,” she says. “We only know about the ones that are diagnosed as stage 4 from the beginning.”
And without that knowledge, Baudais explains, we don’t know which kinds of drug treatments or research projects we should be funding.
Medical oncologist Dr. Christine Brezden-Masley, Director of Sinai Health’s Marvelle Koffler Breast Centre in Toronto, is also frustrated by the lack of data analysis and real-world information about MBC.
“MBC is a problem in that survival can be limited and, although there are more and more therapies with longer and longer survival rates and lots of research of novel therapies, real-world evidence is becoming more and more important,” she says.
“What’s needed now,” she explains, is “a snapshot of what type of MBC we are treating, who are these women, how long are they surviving, what is the toxicity of their treatments and how is their quality of life, what is the unmet clinical need, how should we treat patients after the first line treatment if the disease progresses.”
“These are essential elements that sometimes get lost in clinical trials,” Brezden-Masley contends. “The nuances of treating someone day to day in the real world are very different.” She gives an example of a clinical trial of a drug that reported that only two to four per cent of treatments affect the heart. “In the real world, it was around 10 to 15 per cent.”
Advocating for Change
That real-world evidence, says Dr. Brezden-Masley, would provide a more realistic picture: “How toxic is the treatment with respect to women coming into my clinic? On the flip side, it would provide more information for funding medications that are effective instead of those that are not as effective.”
Dr. Brezden-Masley acknowledges that “it is hard to collect data. It’s fragmented and it’s not always there.” As well, she says, “we have a lot of difficulty with data sharing and data transferring, even within our own academic hospitals.”
This month, Nathalie Baudais and her colleagues with Rethink Breast Cancer want you to be aware that, while breast cancer can’t always be cured and can return as metastatic disease, advocating for more data collection, data sharing and data analysis will result in better outcomes.
“Providing researchers with access to the data, that’s the problem,” she says. “Join our Rethink team to advocate to help make that happen.”