“Together We Are Stronger than the Disease”: A Major Report on Metastatic Breast Cancer
In December 1997, I visited with my aunt, a seven-year breast cancer survivor. In March of 1998, she died from breast cancer that had spread throughout her body. I traveled to her funeral, delaying my own appointment with a breast surgeon who was treating me for an apparent infection. Returning from the funeral, I saw the surgeon who said that because my red, swollen breast hadn’t responded to antibiotics, I would need a biopsy to test for an aggressive form of cancer called inflammatory breast cancer (IBC).
I started my cancer journey at Stage IIIB. I completely skipped the experience many cancer patients have of feeling victorious. I see these women interviewed on television news reports during October. “She’s now cancer free,” the reporter says enthusiastically. I wonder, “How do they know?” Look at Aunt Thelma, doing fine, and then dead within three months.
Shortly after my diagnosis, I joined an on-line support group for people affected by inflammatory breast cancer, which meant that I was spending lots of time with people whose IBC had metastasized. I knew the statistics said that I would probably join those with “mets” within two or three years.
When I finished eight months of chemo, surgery and radiation, no one used words like “cure” or “cancer free” to describe me. Doctors checked me every three months and were quick to order tests if anything looked the least bit off. Gradually my doctors lengthened the time between appointments. Slowly I began to believe that I would stay well, even while I acknowledged that cancer cells might yet be lurking somewhere in my body.
I have spent plenty of time pondering the mysteries of metastasis. Recently, I have been writing number-filled articles about how to understand breast cancer statistics, about the numbers I learned at a conference about metastatic breast cancer (MBC), and about a study of public knowledge about MBC.
For several weeks, I have been anticipating the release of more sets of numbers. The IBC Research Foundation, a group I am active in, is one of 29 participants in the Metastatic Breast Cancer Alliance. On October 13, Metastatic Breast Cancer Awareness day, the Alliance released a detailed report: Changing the Landscape for People Living with Metastatic Breast Cancer. Over the last few days, I read it through. I planned to share a few of the highlight statistics with HealthCentral readers. But I’m tired of numbers right now. I hope you will click on the link to the full report and read them for yourself.
Instead I want to write about what this report represents. Organizations in the same field can be competitive with each other. Each needs funding to accomplish its mission. Researchers need grant money, and there is not enough to go around. It’s easy for organizations to protect their own interests. Twenty-nine organizations working together to produce this study is a huge step.
Changing the Landscape for People Living with Metastatic Breast Cancer analyzes five key areas: what has been done in scientific research, how to improve quality of life for MBC patients and their families, what information and support services member groups provide, how to overcome the challenges of understanding the epidemiology of MBC, and ways to raise public awareness.
Analysis of existing studies plus extensive interviews with researchers, health care providers and patients provides the data. One section takes a hard look at the materials and services provided by the member organizations. The study provides concrete data where it exists and identifies gaps in knowledge that need to be filled. Unfortunately, with MBC there are too many gaps.
The study lists three main goals: to advance research, to improve knowledge and access for patients and their caregivers, and to increase understanding in how MBC differs from early-stage breast cancers. Achieving these goals can only happen with a clear understanding of what has been done, the gaps in research and services, and the barriers standing in the way of success. This report provides a detailed overview and lays out specific steps to move forward.
The authors state, “The power of the Alliance lies in our collective experience, resources, and spheres of influence. Guiding our approach to future work is a commitment to not duplicate efforts of individual organizations in the Alliance, and to collaboration to ensure we learn from each other’s experience and research.”
When a miracle happens like having 29 organizations committed to collaboration, so will research, health-care access, and public awareness. As the Alliance slogan says, “Together we are stronger than the disease.”
Read the report!
Johnson, P. “A Story Half Told: What Do You Know About Metastatic Breast Cancer?” HealthCentral. Oct. 12, 2014. Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/172201/story-metastatic-breast Oct. 15, 2014.
Johnson, P. “Breast Cancer Awareness: Understand the Numbers.” HealthCentral. Oct. 1, 2014. Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/172014/awareness-understand Oct. 15, 2014.
Johnson, P. “Stage IV Needs More: Life with Metastatic Breast Cancer Conference.” HealthCentral. Sept. 29, 2014. Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/171973/metastatic-conference Oct. 15, 2014.
Metastatic Breast Cancer Alliance. Changing the Landscape for People Living with Metastatic Breast Cancer. October, 2014. Retrieved from http://www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf Oct. 14, 2014.