Thanks to the tireless efforts of the breast cancer community, October and breast cancer are tightly bound with the ubiquitous pink ribbon. But the awareness campaign places a heavy emphasis on prevention, detection, and early diagnosis. For women with metastatic breast cancer, there is a sense that the “pink parade” has intentionally passed them by even though an estimated 465,000 annual deaths from breast cancer worldwide occur because of metastatic disease.
The BRIDGE Survey (Bridging Gaps, Expanding Outreach—Metastatic Breast Cancer Patient Survey) aimed to take those women off the sidelines and give them a voice. Sponsored by Pfizer Oncology, the survey collected data from 950 women with metastatic breast cancer (MBC) in nine countries (see Sidebar, below right).
In brief, 53% of those surveyed said that MBC did not garner enough public attention. In addition, 75% said they are proactive about seeking out MBC information while 51% declared the information they do find to be insufficient. Finally, despite the large number of women living with MBC, most felt that their needs and issues go unreported.
Some of the BRIDGE Survey steering committee (see Table) gathered with Andrew Seidman, MD, a deputy editor at Oncology News International and an attending physician at Memorial Sloan-Kettering Cancer Center and professor of medicine, Weill Medical College in New York, to discuss what the survey results mean for breast cancer specialists. The participants were:
• Elyse S. Caplan, MA, education director, Living Beyond Breast Cancer, based in Haverford, Pa.
• Musa Mayer, MS, MFA, author and founder, AdvancedBC.org, based in New York.
• Ruth Oratz, MD, clinical associate professor of medicine, New York University School of Medicine, New York.
Dr. Seidman: The common theme that came through from this survey is that women with MBC really feel under-represented. As a practicing oncologist, I was not overly surprised by that finding, but it gave me some pause to think about why this situation might exist.
Dr. Oratz: A lot of attention is paid to patients with newly diagnosed breast cancer; a lot of medical information and psychosocial support are available through a variety of avenues: in the doctor’s office, in cancer groups, online, even in the lay press. The public face of advanced disease is not out there.
Ms. Mayer: A clear finding from our survey is that in some countries there is a stigma attached to having MBC. I think that fear of talking openly perpetuates the lack of a public face of MBC and makes it much more difficult to identify MBC patients and provide services.
Dr. Seidman: It also struck me that these women looked to the Internet as a valuable source of information. Given the geographic diversity of respondents, how many women actually have access to information over the Internet? In theory, the Internet could be a great leveler, but I do wonder about access and how it connects to the feeling of being under-represented.
Dr. Oratz: In terms of the way the survey was worded, this was a forced choice: We asked women what the most helpful source of information was apart from their healthcare providers. While it did turn out to be Web sites and other Internet resources, that was really an issue of availability.