When Musa Mayer was diagnosed with stage II breast cancer in 1989, she relied on a medical textbook and a dictionary to make sense of her illness. Later, she found support from other patients through a breast cancer email listserv and in small group meetings, which she continued to participate in after her treatment and recovery.

As she came to know fellow survivors, she was particularly struck by the experiences of women who had recurrences and were living with metastatic breast cancer. At that time, she says, more resources were becoming available for women with early-stage breast cancer, but they were completely lacking for women with metastatic disease. “I saw the need and also clearly saw the reluctance on the part of the breast cancer community to give metastatic cancer patients the attention they deserve,” she says.

Since then, Mayer has worked to address that need. She wrote Advanced Breast Cancer: A Guide to Living With Metastatic Disease, which was published in 1998, and then, to provide a place for women to share information, created the website AdvancedBC.org. She is also a founding member of the Metastatic Breast Cancer Alliance, which has united 29 leading cancer nonprofit groups, advocacy organizations and pharmaceutical companies seeking to strategically advance metastatic breast cancer research. The Alliance’s first report, Changing the Landscape for People Living With Metastatic Breast Cancer, published in October 2014, provides a comprehensive analysis of the state of metastatic breast cancer research, support services and public awareness.

Cancer Today spoke with Mayer, who authored or co-authored several sections of the Alliance’s new report, about changes she has seen and would like to see for women and men living with metastatic breast cancer.

Q: What are some myths about metastatic breast cancer?
A: There’s a widespread belief that after patients undergo treatment for early-stage breast cancer, they are cured and don’t need to think about recurrence. Yet an estimated 20 to 30 percent of these patients will go on to develop metastatic disease. We are sold a bill of goods about the benefits of early detection and how good treatments are, and that leads many patients diagnosed with metastatic disease to feel that they did something wrong—that they didn’t catch it early enough or get the right care. The Alliance is committed to changing that perception. We have organizations in the Alliance that have traditionally been associated with early detection and cure [that] recognize … we need to join together to better meet the needs of metastatic patients.

Q: How can oncologists better treat metastatic breast cancer patients?
A: For these doctors, the focus is principally on controlling the disease. But they also need to routinely assess and address symptoms and side effects. Most patients don’t have access to palliative care teams, but there is a lot oncologists can do themselves for their patients just by routinely assessing symptoms and side effects.

Q: What are some key goals of the Alliance?
A: We’re working on building a clearinghouse of current, evidence-based, user-friendly patient information. We are also collaborating with epidemiologists at the National Cancer Institute’s SEER (Surveillance, Epidemiology, and End Results) Program to get more accurate data on patients with metastatic breast cancer. Finally, we’re investigating the possibility of developing what’s called a matched pair blood and tissue bank—a tissue bank that has primary and metastatic samples from the same patient—so researchers can determine what makes metastatic tissue distinct from primary cancer tissue.

Q: You attended the 2014 San Antonio Breast Cancer Symposium last December and the American Association for Cancer Research (AACR) workshop on innovations in breast cancer drug development last November. What were the takeaways regarding metastatic disease?
A: In San Antonio, it struck me that the research community is just beginning to realize the true complexity of metastatic disease. We’re discovering, for example, the implications of tumor heterogeneity, and the fact that even within the same patient, the genetic makeup of metastatic tumors can be different. We’re also becoming aware of the role of the tissue microenvironment and how the non-cancerous cells and molecules close to the tumor influence its development.

At the AACR workshop, the major players in clinical research came together to find ways to make clinical trials for metastatic disease more efficient. Right now, by the time the [clinical trial] results come out, the research findings are often obsolete.

Q: Are you optimistic about where the research is headed?
A: In general, I think there’s been an increasing collegiality and trust between research and advocacy organizations over the past few years. And I’m convinced that the attention that we’re now getting for metastatic breast cancer has the potential for making some real changes and will influence care for all types of advanced cancers.