Rachel would have loved this. And Susan. Lois Ann. Bear. Della. Donna. And the hundreds of metastatic breast advocates whose voices have been claimed by this disease, which accounts for 40,000 deaths every year. Since 2005 alone more than 202,000 people have died of metastatic breast cancer. This is twice the size of the community in Texas where I live.
Work these men and women started was affirmed last month with the publication of a 132-page report by the Metastatic Breast Cancer Alliance (MBCA) (www.mbcalliance.org), a 29-member coalition of breast cancer nonprofits, pharmaceutical companies, and individual members established in October 2013. At the organization's launch last year MBCA Alliance Director Marc Hurlbert promised a landscape analysis of the metastatic breast cancer field, its research, gaps, and needs, and this report is the result.
The document is well written, concise, and direct. It states facts and findings clearly. For the first time since I was diagnosed in 1998, there is an attempt to identify the needs of metastatic breast cancer patients as it affects them on a daily basis as well as the gaps existing in the understanding and treatment of the disease itself.
Some of the gaps are daunting. Although many individual findings are not new, the collective impact is powerful. A lack of understanding about the natural course of breast cancer. No accurate way of recording the number of recurrent and metastatic cases. A “me too-ism” of copycat clinical trials. In an age of abundant information, the difficulty metastatic breast cancer patients face in finding the right information at the right time.
One of the report's many unique contributions is a revealing analysis of metastatic breast cancer research, including a two-month sampling of clinical trials and another of grants from 2000 through 2013. Interviews with key opinion leaders, as well as a description of how those individuals were identified, are included.
The trials and grants are categorized using two different systems: Douglas Hanahan and Robert Weinberg's “Hallmarks of Cancer,” which describes how cancers develop, and Patricia Steeg's Steps of Metastatis, the five-step, arduous process by which cancerous cells leave the original tumor site, enter the blood stream or lymph system, and then go on to colonize a new area. For this scientific research chapter alone, the report deserves merit.
In categorizing the trials and grants, areas where research is lacking stand out loudly. This thorough charting will focus essential dialog between researchers, advocates, and industry. We all know more research is needed in metastatic breast cancer. But I've always wondered: what kind? This report can start a conversation based on evidence. That is the only place to start.
Scientific research on MBC is only one of five areas of inquiry. Other topics investigated include the quality of life of MBC patients, families and caregivers; information and support services provided by MBC Alliance members; MBC epidemiology; and public awareness of MBC. In each area existing gaps were identified and challenges noted. In each area the writers pull no punches.
No Lip Service to MBC as a ‘Chronic’ Disease
Unlike many attempts to minimize or “normalize” an incurable disease, there are no bland generalizations or lip service to MBC as a “chronic” disease patients can learn to live with. In short, the report makes clear in many ways that 20 years of building awareness about early breast cancer has left the needs, understanding, and treatment of metastatic breast cancer patients in the dust.
Twenty years of awareness has helped construct a medical system dedicated to the identification and treatment of early cancers without consideration for the “other 30 percent.”
The authors even turn the spotlight on alliance members collectively, noting that, “Breast cancer campaigns have heightened awareness yet have propagated unexpected misinformation” and “Campaigns with a focus on ‘the cure’ distract from a research agenda to increase the quality and quantity of life for MBC patients.” Both are accurate and appropriate.
Had the authors mounted a defense about the prior emphasis on early detection, the report's credibility would have been severely strained. As it is the tone is just right, an acknowledgement that this is the state of metastatic breast cancer as it is now. We cannot go backward. We can move forward with knowledge.
Here are some—just some—key observations:
- Scientific research: There is a paucity of research in MBC control, outcomes, and survivorship.
- Scientific research: Metastatic research funding accounts for just seven percent of the $15 billion invested in breast cancer research from 2000 to 2013 by major funders from North America and the U.K. The distribution of funding (mostly basic research) has not changed much in 10 years.
- Quality of life: More than 150 peer-reviewed articles were studied. A significant number of patients with MBC experience multiple symptoms and side effects. Many are not receiving the help they need to address physical symptoms, side effects, and emotional distress.
- Quality of life: The needs of minority and poor populations living with MBC have not been fully addressed in research surveys. Minority women are underrepresented in clinical trials, research surveys, and Internet support groups.
- Information and support: Information is seen as a primary need by 75% of the MBC community.
- Information and support: Despite what may seem to others like an overabundance of information about breast cancer, “persistent gaps in information include detailed information on the latest treatments, including side effects and quality of life; palliation; advanced directives and end-of-life care.”
- Epidemiology: The prevalence and incidence of MBC is literally unknown. The number of women and men living with MBC are “creative estimates.” The National Cancer Institute's SEER data base measures only the primary diagnosis, primary treatment, and death. The only metastatic cases recorded are the five percent presenting with metastatic disease. Recurrent disease and/or a metastatic diagnosis are not registered. The survival disparity between black women with MBC and non-Hispanic whites with MBC appears to be increasing and the reasons are not clear.
- Epidemiology: The natural course of metastatic disease is not well understood, despite the fact that the bulk of scientific query into breast cancer for the last decade has been in “basic research.”
- Public Awareness: A focus on “fighting” breast cancer has led to the dominance of an identity that masks the reality that women with early stage breast cancer can and do develop metastatic disease.
- Public Awareness: Adults surveyed felt that breast cancer in advanced stages was curable and that those whose cancers metastasized did not take the right medicines or preventative measures.
Action items urged in the report include having:
- More multi-institution trials;
- Tissue banks containing both primary and metastatic tumors;
- More research on the biology of metastasis;
- New endpoints in clinical trial design that reflect the reality of metastatic disease;
- Better communication among patients, caregivers, and providers;
- Expanded design, content, and delivery of information needed by MBC patients (up-to-date treatment information, clinical trials, side effects);
- Investigations into critical issues: the optimal treatment of MBC—“It is imperative that the use, effectiveness, and impact of MBC treatments on the overall MBC population be understood”; and
- Broader understanding of health care providers in discussions about treatment, quality of life, and palliative care.
The report sets the stage for future advocacy that is broad enough for wide participation yet focused in critical research areas. The Alliance has established leadership in an area that needs both leadership and continuity.
The breast cancer community as a whole has not been widely known for its camaraderie. How the Alliance will interact with its many other stakeholders isn't clear right now, and I still have many questions. But what a foundation this is.
The full report is available at: www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf