Excerpt from Background Section of
Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Services
(authors: Musa Mayer, M.S.. and Susan Grober, Ph.D. for Living Beyond Breast Cancer, 2006)
Little is known in specific terms concerning the needs of women with advanced (metastatic) breast cancer for information, support and practical services. Existing research has largely focused on psychosocial interventions and coping mechanisms, most often in the context of studying all advanced cancer patients or in women with primary breast cancer.
Within the larger community of those living with a breast cancer diagnosis, this important subgroup has remained largely silent, with the result that relatively few services have been targeted specifically to this population.
Initially, this gap in services might seem unexpected, given the strong emphasis on breast cancer awareness in the United States, and the number of organizations and advocates whose work is focused on helping people with the disease. Breast cancer is often in the media, but to the careful observer, media coverage typically emphasizes potential research breakthroughs, early detection and upbeat stories of survival. After a decade and a half of effective breast cancer advocacy, many organizations dedicated to this cause are making significant contributions to research, support and public awareness. Yet, surrounded by throngs of survivors in pink ribbons, women with advanced breast cancer often feel invisible, and this feeling is frequently intensified during the annual media saturation each October, where the emphasis remains on mammograms, early detection and uncomplicated survivorship.
Given the opportunity, some women with advanced breast cancer feel this marginalized status acutely, and eloquently express it to others living with the same diagnosis. “Why isn’t the truth ever told about breast cancer during ‘Awareness Month’?” one woman wrote to BCMETS, a mailing list for women and their families who are dealing with advanced breast cancer.[i] “Why do we hear this same old worn out message? Why are we with metastatic disease not mentioned or ignored and viewed as breast cancer's dirty little secret?”
Another woman explained that she and other women with metastatic disease often don’t identify with breast cancer survivor groups and their symbols: “The pink ribbon is a ribbon of hope and I think what is troubling is (that) we feel forgotten and feel like we represent the lack of hope. When we are remembered, we are recognized as losing the battle. We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”
Even within the health care community, patients have similar experiences. Social worker Roz Kleban, who leads the metastatic breast cancer support group at Memorial Sloan-Kettering Cancer Center in New York, refers to these women as “forgotten patients, shunted aside because they have ‘failed.’…Women with metastatic breast cancer connote a failure of medical knowledge and science, which clearly the system doesn’t feel good about.” 
While the underlying causes for this silence and neglect are complex and beyond the scope of this report, the needs assessment survey discussed in this paper was developed to give these women a voice with which to speak out and let the health care and support community know what services they need. By participating in this project, these women provide invaluable information about what they and their families need in the way of assistance during the course of their disease in the three critical dimensions of information, support and practical assistance.
Breast Cancer Incidence, Recurrence and Mortality
More women in the United States have breast cancer than any other form of cancer (excluding skin cancer). The National Breast Cancer Coalition estimates the prevalence of this disease to be more than 3 million, with 2.3 million having been diagnosed and one million unaware they have the disease.
In the year 2006, the American Cancer Society projects that 274,900 new cases of breast cancer will be diagnosed in American women, of which 212,920 will be invasive cancers, and 61,980 will be in situ, a non-invasive form of the disease that carries a potential for becoming invasive. Although overall mortality rates from breast cancer per 100,000 women have decreased somewhat in recent years, breast cancer is still the second leading cause of cancer death in U.S. women after lung cancer. The American Cancer Society estimates that 40,970 American women will die from the disease in 2006. For younger U.S. women, between the ages of 20 and 59, breast cancer remains the leading cause of cancer death. Breast cancer is also the leading cause of cancer death for women of all ages worldwide, representing more than 410,000 deaths among the 1.1 million women diagnosed each year. This year, approximately 1,720 new cases of invasive breast cancer will be diagnosed among American men, and approximately 460 men in the U.S. will die from the disease.
Stage at initial diagnosis is a strong predictor of distant metastatic recurrence, with women diagnosed with cancer that is locally advanced, spread regionally beyond the breast, much more likely to recur than breast cancer diagnosed as localized, although as many as 30% of localized cancers ultimately do recur, and many of these will go on to develop distant metastases.
The stage of disease at diagnosis is higher in African American women. Despite a lower overall incidence, the most recent 2003 figures, published by the National Cancer Institute’s Statistics, Epidemiology and End Results (SEER) database show that the five-year survival rate for black women diagnosed with invasive breast cancer is only 77%, while the five-year survival rate for white women now stands at 90%. Despite decades of effort aimed at early detection, SEER reports estimate that in nearly two-fifths (37%) of newly diagnosed patients with invasive breast cancer, the disease had already spread either regionally (31%), or to distant metastatic sites (6%).  Almost all deaths from breast cancer are the result of the progressive spread of cancer from the breast to other parts of the body, where the tumor can cause symptoms, disability and eventually disturbs some vital function. While most cases of metastatic breast cancer represent the recurrence of primary invasive breast cancer, in 6% of new invasive breast cancer cases (representing approximately 12,775 American women a year), the cancer will have already spread to distant metastatic sites when first diagnosed. Once breast cancer metastasizes to distant sites, it is generally considered incurable, and is almost always progressive. This progression may be rapid in treatment-resistant patients with aggressive, fast-growing disease or it may follow a relatively indolent course over a number of years in patients with tumors that are responsive to treatment, especially hormonal therapies. According to the National Breast Cancer Coalition, “Approximately 12% of women diagnosed with invasive breast cancer die from the disease within five years. At ten years, 20% will have died. The 2003 statistics show that 40% of all women diagnosed with invasive breast cancer died from the disease within 20 years.”  Of course, since these figures reach back to look at the outcomes of patients diagnosed 20-25 years ago, it is not possible for them to reflect potential recent gains in survival due to new medical treatment developments or diagnosis at earlier stages.
Estimating the Size of the Affected Population
Despite these dismal statistics, advanced breast cancer is usually treatable and may allow many women with metastatic disease to live a number of years. Median survival after diagnosis with metastatic disease is generally estimated to be from two- to three-and-a-half years. However, the disease course is extremely variable, and 22% of patients with distant metastases will live at least five years, and about 10% will live 10 years or more. Only 2-3 percent are considered cured.  On a more encouraging note, more recent research suggests that newer treatments that have become available over the last 15 years may have somewhat enhanced length of survival.,  An undetermined number of women initially diagnosed at Stages I-III will go on to have distant recurrences of their original breast cancer at some point after their first diagnoses, and almost all of these will eventually die of their disease. About half of distant recurrences occur within five years of diagnosis, and the remainder in subsequent years. While the vast majority of metastatic recurrences will happen in the first 15 years, a few occur as late as 25 to 30 years after initial diagnosis. Between one-half and two-thirds of women diagnosed at Stage II and III (regional disease) will ultimately develop metastatic disease. In combination with the women who initially present at Stage IV (distant disease), this would mean that every year between 73,000 and 86,000 American women discover they have metastatic breast cancer.[xiii] We can therefore estimate that at any given time, a low estimate of 150,000 and a more reasonable estimate of 250,000 American women are facing the ongoing challenges of living with metastatic disease. Many more at high risk of recurrence are living in fear that may significantly impact daily life and are also in need of support and information on advanced breast cancer.
Public Perceptions and Available Resources
What these data may obscure is that among the millions of breast cancer survivors there is another sizable, largely silent and invisible population of women living with advanced (metastatic) disease. Incidence and mortality statistics concern themselves with diagnosis and death, and tell us nothing about the lived experience of advanced breast cancer.
Although research and medical advances are helping patients with metastatic breast cancer to live longer, with better quality of life, often these women describe themselves as isolated, even from other breast cancer survivors.
Their experiences and needs are not well understood. A 1995 study sponsored by the National Alliance of Breast Cancer Organizations surveyed 200 women with metastatic breast cancer and their caregivers. Most of those surveyed “believe the public sees these women as being near death—with little or no time to live.” Often, life for them can seem quite normal in the early months and even years after diagnosis. Yet periodically at first, and then with greater frequency as their disease progresses, their lives do become dominated by the reality of their illness, by the treatments they must receive, and by having to deal with symptoms, side effects and tests to assess disease progression. As each treatment fails, the search for further life-extending treatment comes to the foreground. Their lives and those of their families and loved ones are often thrown into turmoil by the stresses involved.
At the same time, some women with advanced breast cancer find that few social and informational supports exist for them in their own communities. In fact, while breast cancer resources in general grew during the last decade and a half as a result of advocacy and public health efforts, patient education, information, and psychosocial supports for women with advanced breast cancer and their families appear to have lagged far behind the significant advances in research and treatment.
In general, established breast cancer organizations have been slow to identify and address the needs of women with metastatic disease on an ongoing or regular basis. The vast majority of patient education materials and media coverage on breast cancer still focus on the experience of primary breast cancer survivors who benefit from early diagnosis and treatment and will never face a recurrence of their cancer. Women with advanced breast cancer face very different issues and challenges than do newly diagnosed primary breast cancer patients, and the same resources are often not appropriate for them. Yet there are few resources specifically dedicated to their needs. For example, the 82-page 2000/2001 edition of the NABCO Breast Cancer Resource List had one page on Planning for the End of Life and a half page on myths and facts about managing cancer pain. Its listed resources on Recurrence and Metastatic Breast Cancer consisted only of five booklets, one video, and what still remains, five years later, the only book-length patient guide to the disease. In 2006, NABCO, as well as the website on recurrent breast cancer it developed to address this deficiency, no longer are in existence.
Relatively few in-person support groups have been set up specifically for women with advanced breast cancer. In fact, there were fewer than 20 nationwide in 2001, according to a NABCO estimate, from among the many hundreds offered for women with primary breast cancer. Increasingly broad usage of the Internet has to an extent ameliorated the isolation some of these women feel. A number of women living with metastatic breast cancer appear to have found companionship and support in online mailing lists, bulletin boards and chat rooms, while others have been able to find hospital-based in-person support groups for patients with a variety of advanced cancers.
Information sources have increased over time, especially online, with some websites offering frequent research updates timed to the major cancer conferences by experts and thought leaders in the medical community, and easy-to-understand write-ups of emerging research. Increasingly, government-sponsored websites offer access to information about clinical trials and treatment options. While it is clear that some resources for women with advanced breast cancer do exist, they remain widely scattered, disorganized, and difficult for women to locate, evaluate and understand. There is currently no comprehensive dedicated website that serves as an information clearinghouse for this population.
-  Message from the BCMETS Mailing List, archived at www.bcmets.org
 Mayer, Musa Advanced Breast Cancer: A Guide to Living with Metastatic Disease. Patient-Centered Guides: O’Reilly & Associates, 1998. p. 4
 Facts About Breast Cancer in the United States: Year 2006, The National Breast Cancer Coalition fact sheet:
 American Cancer Society. Cancer Facts and Figures 2006. Atlanta, GA, 2006; American Cancer Society; and Breast Cancer Facts and Figures 2005-2006. Atlanta, GA, 2005.
 Parkin DM, Bray F, Ferlay J, Pisani P. Global cancer statistics, 2002. CA: A Cancer Journal for Clinicians 55:74-108
 Ries LAG, Harkins D, Krapcho M, et al. (eds). SEER Cancer Statistics Review, 1975-2003, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2003/ , based on November 2005 SEER data submission, posted to the SEER web site, 2006.
 Ibid. SEER Data.
 Actual percentages for regional and distant spread are likely to be slightly higher, since an “unstaged” two percent are included in the SEER data, for whom five-year survival rate is only 54%, indicating that the unstaged cases represent primarily locally advanced (regional) and distant metastatic breast cancer patients.
 Op, Cit. NBCC Facts, 2006
 Falkson G, Gelman RS, Leone L, Falkson CI. Survival of premenopausal women with metastatic breast cancer. Long-term follow-up of Eastern Cooperative Group and Cancer and Leukemia Group B studies. Cancer. 1990 Oct 1;66(7):1621-9.
 Chia S, Speers, C, Kang A et al. The impact of new chemotherapeutic and hormonal agents on the survival of women with metastatic breast cancer in a population-based cohort. Proceedings of the American Society of Clinical Oncology 2003; 22:6a
 Giordana SH, Buzdar Au, Smith Tl, et al. Is breast cancer survival improving? Cancer 2004; 100(1):44-52
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 NABCO Survey Challenges Public Perception About Metastatic Breast Cancer, PR Newswire, October 19, 1995
 NABCO Breast Cancer Resource List: 2000/01 Edition, National Alliance of Breast Cancer Organizations.
-  Personal communication, 2001.