specialreport
Living with metastatic breast cancer: a global patient survey
Musa Mayer, MS, MFA,1 - Adrián Huñis, MD,2 - Ruth Oratz, MD,3 - Cathy Glennon, RN,4 - Pat Spicer, LMSW,5 - Elyse Caplan, MA,6 -Lesley Fallow eld, DPhil,7
1 AdvancedBC.org, New York, NY;
2 University of Buenos Aires School of Medicine, Buenos Aires, Argentina;
3 New York University School of Medicine, New York, NY;
4 International Society of Nurses in Cancer Care/University of Kansas Hospital, Kansas City, KS;
5 CancerCare of Long Island, New York, NY;
6 Living Beyond Breast Cancer, Haverford, PA;
7 Brighton and Sussex Medical School, East Sussex, United Kingdom
Worldwide, one-third of patients who present with early-stage breast cancer will go on to develop metastatic dis- ease. Despite a serious diagnosis with a grave prognosis, treatment advances have meant that women are living longer with metastatic breast cancer. Although the clinical aspects of metastatic breast cancer have been well studied, little is known about the personal, psychosocial, and emotional experiences of women living with the disease. Because early-stage breast cancer is highly visible in the media and is a focus for most patient advocacy groups, women with metastatic disease feel isolated and alone. This paper presents the results of an international survey that questioned 1,342 women with metastatic breast cancer from 13 countries. The survey was de- signed to understand the non-medical attitudes of patients living with metastatic breast cancer, identify perceived gaps in resources available to these patients, and de no barriers to clinical trial enrolment and participation.
Sometimes I feel like I am hidden and forgotten.” *ese sentiments of Lynn, a woman with metastatic breast cancer (MBC), are echoed by countless others with the disease. ose who work with such patients often encounter this seeming paradox: despite the high visibility of breast cancer as a media focus, a research priority, and a support and advocacy movement, women who are living with advanced disease often feel
marginalized and alone.
In developed countries, approximately 30% of patients having an initial diagnosis of early-stage breast cancer (EBC) will go on to develop MBC,1, while in developing countries, where breast cancer is often first diagnosed at later stages, MBC rates are much higher.2 Worldwide, breast cancer is the leading cause of cancer death among women, ac- counting for an estimated 465,000 annual deaths, a figure that represents nearly 36% of 1.3 million diagnosed cases of breast cancer each year.3,4 Met- astatic disease therefore presents a major clinical problem in oncology. Despite recent advances in understanding the clinical and biological aspects of MBC, it is still not curable for the vast majority of patients.
The focus on clinical issues means that the true impact of MBC goes underestimated, underreported, and under-researched. While enduring the symptoms of MBC and the adverse e effects of therapy, many women are able to live with the disease for a number of years. However, women with MBC and their families experience marked psychosocial challenges that profoundly a effect quality of life. In addition to medical concerns, there are emotional, social, and spiritual demands.
Breast cancer is typically portrayed in the popu- lar media with an upbeat message that emphasizes the positive e ect of early detection and the high likelihood of a cure. e disease is described as hav- ing nearly been “beaten,” and the concept of long- term survival is stressed.
In the United States, one month in particular— October, designated as Breast Cancer Awareness month—is dificult for many women with MBC. In that month, all the attention seems to be on “screening, prevention, and curability,” said Sue, who had stage IV disease at initial diagnosis.
"It implies that breast cancer which is detected ‘early’ can always be cured, which places an indirect form of responsibility on those whose cancer is not detected early. I can’t wait until the ‘pink’ month passes by each year!”
In contrast, the reality of metastatic disease is rarely mentioned, even in the meeting rooms of the breast cancer advocacy and support groups. “Is it because people are afraid?” asked Lynn. “Maybe they want to believe if you don’t acknowledge it, it can’t happen to you.” Having metastatic disease can cause women to feel isolated from others within their support groups who have not had a recurrence. They may withdraw and censor what they say for fear of upsetting the other women.
Women with MBC report a broader sense of social stigma that may even create a sense of guilt about having developed advanced disease. “People tend to shy away from me when they find out about my disease,” said May. “I like to be charitable and assume it’s because the thought of it scares them, but sometimes I think they believe I must have done something wrong to ‘deserve’ it.”
In addition, the prognosis for MBC is frequently misunderstood. “Most people believe that those with metastatic disease will die very quickly after diagnosis so there is no point in focusing on it,” said Robin. “When I explain what ‘metastatic’ means, I see the look of pity or sadness and a complete lack of understanding that one can live quite normally with metastatic breast cancer for many years.”
Taken together, these factors can create a climate of silence that prevents the real story of women living with MBC from being told. It is important that women with MBC emerge from the “pink ribbon’s shadow” and are given a voice, particularly as the 5-year survival rate for MBC in developed countries is 27% and advances in treatment have meant that some women are living longer, with 9% still alive at 10 years.(5–9)
The BRIDGE (Bridging Gaps, Expanding Outreach) Survey
Given the seriousness and prevalence of MBC and its global burden, it is surprising that so few studies have focused on its impact on the lives of patients and their families. To better understand the experience of living with this incurable, progressive disease, in 2008 we developed an international survey—the BRIDGE (Bridging Gaps, Expand- ing Outreach) Survey—designed to reach women with MBC in a variety of different cultures. Its aims were threefold: to understand attitudes of those living with MBC; to determine perceived gaps in resources, information, and psychosocial support for women with MBC; and to identify perceived barriers to clinical trial enrolment and participation.(10–13)
We recruited to the survey patients from 13 countries: Argentina, Australia, Belgium, Brazil, Cana- da, Egypt, France, Mexico, Poland, Spain, the United Kingdom, the United States, and Venezuela. Women at least 18 years of age with MBC were asked a total of 34 questions, a process that took approximately 25 minutes. Interviewers in developing countries were female local- language speakers. To minimise selection bias, patients in developing countries (and most developed countries) were referred by a minimum of 20 physicians practising in several locations within each country. e survey methodology in each country (method of recruitment and survey technique used) is summarized in Table 1.
Results
A total of 1,342 women with MBC participated in the BRIDGE Survey, suggesting that the survey itself may be offering a welcome platform for women with advanced ease to express their thoughts and concerns.
At 55 years, the median age of respondents was relatively young, with the sample including a younger cohort from Egypt with a median age of 44 years, perhaps reacting earlier onset or more aggressive disease reported in African countries.2,14 Patients were about evenly divided between those with an initial diagnosis of MBC (48%) and those with an initial diagnosis of EBC who later developed recurrence (52%).
Attention paid to MBC versus EBC
A particularly sensitive issue for many women with MBC is the disproportionate amount of attention paid to the needs of women with EBC. “Early-stage disease still gets the bulk of the focus,” said Mara. “Most organizations focus on getting through treatment and attaining ‘survivor’ status.”
When questioned on the degree of attention MBC receives in their countries, most women (52%) in the BRIDGE Survey felt that MBC is given too little consideration. In 11 of the 13 countries, the majority of patients believed that MBC did not receive enough attention. Mexico and Brazil were the exceptions. Patients were then asked to compare the attention that MBC receives the attention that EBC receives. Ap- proximately half (48%) felt that EBC is given more attention than MBC; however, 14% actually felt that MBC received more attention. is a trend was also observed when we analyzed the data by country (Figure 1). In three countries—Egypt, Mexico, and Venezuela—women said MBC receives more attention than EBC. In these countries, diagnosis with locally advanced and stage IV breast cancer is more common, and it is possible that cultural norms and insufficient facilities for screening and early detection may account for a relatively greater perceived emphasis on MBC as compared with EBC.
Resources for women with breast cancer have become more widely available in the past 10 years, but how are these support services perceived with respect to the attention they give MBC? Only 24% of women felt that advocacy, voluntary, and/or charitable organizations paid “a lot of attention” to MBC. In comparison, 44% and 15% of surveyed patients felt that healthcare professionals and the media, respectively, paid “a lot of attention” to MBC.
Psychosocial issues and support
Despite some commonalities in the treatments of EBC and MBC, some experiences and emotions are unique to women with advanced disease. “Today in the infusion room, another patient asked when I will be finished with treatment,” said Beth. “I felt uncomfortable saying that I would never be finished.”
Negative emotional reactions are common when women are first faced with the knowledge that their cancer has metastasized. Responses to survey questions revealed that patients experienced an array of negative emotions when first told their diagnosis, with the majority, 55%–80%, reporting feel- ing scared, confused, depressed, angry, and alone at that time (Figure 2).
Understandably, the majority, 51%–69%, reported serious concerns related to MBC as well, including fear of death and worry about end-of-life care, fear that their quality of life would deteriorate, and fear of possible treatment adverse e effects (Figure 2). ey also expressed concern about losing their ability to care for their families. In fact, 59% of women surveyed said that most aspects of their lives had changed in a negative way.
Despite the negative emotions and serious concerns, they cope with on a daily basis, many women with MBC appear to possess an extraordinary ability to adapt to di cult circumstances. Tree-quarters (74%) of the women in the BRIDGE Survey said they were still able to enjoy life despite having MBC, and two-thirds (67%) reported feeling generally optimistic. Although survivorship as a concept is rarely associated with women with MBC—many of whom object to being called survivors—it is striking that 61% of the women in our survey did consider themselves to be cancer survivors.
This level of coping would hardly be possible without considerable social and emotional support. Encouragingly, 98% of survey respondents felt they receive sufficient support from at least one person in their “inner circle” of family and friends. Equally encouraging, most women
said they received enough emotional support from their oncologists and nurses (83% and 81%, respectively).
Despite a high level of perceived support from the people closest to them, 48% reported that friends and family were uneasy talking about MBC, and 38% reported anxiety about being open with their friends and family. Women in Egypt, Mexico, and Spain were most afraid of such openness, whereas women in Argentina, Australia, Belgium, Brazil, and the United States were least afraid. National di erences around disclosure of diagnosis and experi- ences related to MBC may suggest that at least some of this fear may be culturally linked.
Women’s experiences with others o er insight: “Most other people seem so petrified of early-stage cancer,” said Mara. “I don’t want to deal with whatever anxieties they have that seem to over ow when they learn about my metastatic disease.”
Available resources
Information plays an important role in helping women cope with MBC. Overall, three-quarters (76%) of the women in the BRIDGE Survey reported taking an active role in searching for information on MBC, and a similar percentage (81%) said they were actively involved in making decisions about their treatment.
“Having metastatic cancer brings with it an intense feeling of having no control over my own life,” said Pam. “While I cannot control the cancer cells themselves, I can control how actively I participate in treatment, learn about ongoing research, trials, and drugs that are under development.”
In addition to consulting their healthcare professionals, women used a variety of other sources to search for information on their disease (Figure 3). Although the majority of patients (63%) used written materials, only 13% felt that written materials were the most helpful. Overall, the most helpful source of information was the Internet.
Medical information was in great- est demand, but women also asked for nonmedical information such as advice on how to talk to other people about MBC (67%) and how to pay for medical care and treatments (70%), and psychosocial and emotional support from advocacy, voluntary, or charitable organizations (74%). Women were also asked if they would like to see more of certain activities and materials. A summary of their responses is provided in Table 2.
Interestingly, information-seeking behaviour appeared to correlate with participation in clinical trials. Overall, 34% of women who had searched for information on clinical trials had gone on to participate in one. In contrast, only 12% of women who did not search for information participated in clinical trials.
Despite their participation in this survey, it is worth noting that even in developed countries, only a minority of these “engaged” women participated in trials. Trial participation seemed to be largely influenced by access. Participation in countries with few ongoing clinical trials such as Egypt (13% of women had participated in a trial) was low compared with that in countries such as Belgium (27%), Canada (35%), and Mexico (35%). Unfortunately, although the number of clinical trials available for patients with MBC has increased in recent years, there has not yet been a comparable increase in the number of patients be- ing enrolled.(15)
Limitations and recommendations
The results of the BRIDGE Survey should be interpreted with caution, particularly with regard to comparisons between countries. As might be predicted in a global survey, cultural differences most certainly have influenced the fundings. It is di cult to qualify and quantify these cultural differences in a preliminary survey such as this one. These differences may be related to the way physicians communicate with their patients or to women’s primary point of contact (physicians versus nurses). Furthermore, cultural mores may influence patients’ experience of social stigma or personal shame associated with a disease that may be seen as “sexualized.” In addition, some of the developing countries may not have any established breast cancer support networks, which in turn may in influence the responses of women in these countries.
On the basis of the survey’s findings, the BRIDGE Survey Steering Committee recommends the following:
■ Increase the quality and quantity of MBC-related activities covered by the media and patient-interest groups in order to shift dialogue in the public domain toward MBC.
■ Ensure that all existing and newly available medical and support materials on MBC are culturally relevant, up to date, and easily accessible. Consider prioritizing the Internet as a source of this literature.
■ Provide patients having MBC with a broad range of information from medical to nonmedical, and ensure that information is translated into local languages.
■ Encourage healthcare professionals to have more comprehensive conversations with women with MBC, ensuring that quality-of-life issues are emphasized in discussions.
■ Help women with MBC to develop tools for communicating and sharing their experiences more e effectively with family, friends, and their community.
■ Develop more initiatives to educate the broader community (eg, commu- nity leaders and workplaces). Engage relevant advocacy organizations and healthcare professionals in activities that focus attention on women living with MBC.
Conclusions
A diagnosis of MBC is devastating, yet many women in our survey showed an extraordinary ability to cope. “It made my life spiral out of control and left me broken and hopeless,” said Darlene. “ is learn- ing process and renewed sense of empowerment gives me the greatest gift a cancer patient could ever receive— HOPE!”
A clear message from the BRIDGE Survey is that most women with MBC and both information and support important. Those who seek out information are more likely to be actively involved in their treatment decisions and to participate in clinical trials. A 2006 online survey of 618 women with MBC, most from the United States, undertaken by the organization Living Beyond Breast Cancer, reached a similar conclusion.16 As more and more women live longer with metastatic disease, offering informational resources for this population takes on increasing importance. Our study also suggests that informed patients tend to be more collaborative with their physicians. e voluntary participation of these women in clinical trials facilitates the translation of novel therapeutics from the laboratory to the clinic. With the development of new treatments comes the possibility of transforming MBC into a truly chronic disease, one that most affected patients will be able to live with for extended periods of time, as some do today. For an informed patient at this critical point in breast cancer science, there is much to learn about novel therapies and approaches to treating and understanding the disease. Clearly, a majority of women with MBC do want to learn. In fact, women in our survey requested up- dates on new medical research and treatments more often than on any other topic.
Support services are equally critical. With an incurable disease that requires ongoing treatment, quality-of-life issues assume priority. e adverse effects of therapy, as well as the symptoms of the disease, take a physical and emotional toll on women and their families. A focus on treating the whole patient, not just cancer, becomes critical, as do the services of an integrated and multidisciplinary healthcare team.
The overarching concern reflected globally in the BRIDGE Survey has to do with the invisibility of this large patient population, especially striking in the countries with well-developed breast cancer communities. Until now, shame, silence, and isolation have been hallmarks of MBC. However, we know what has happened with other life-threat-
metastatic breast cancer to step out from the pink ribbon’s shadow.
ABOUT THE AUTHORS
Af liations: Ms. Mayer is a Patient Advocate with AdvancedBC.org, New York, NY; Dr. Huñis is an Assistant Professor of Internal Medicine at the University of Buenos Aires School of Medi- cine, Buenos Aires, Argentina; Dr. Oratz is a Clinical Associate Professor at the New York University School of Medicine, New York, NY; Ms. Glennon is Director of Nursing for Cancer Services with the International Society of Nurses in Cancer Care/University of Kansas Hospital, Kansas City, KS; Ms. Spicer is the Breast Cancer Program Coordinator with CancerCare of Long Island, New York, NY; Ms. Caplan is Director of Programs & Partnerships with Living Beyond Breast Cancer, Haverford, PA; and Dr. Fallow- eld is Director of the CRUK Sussex Psychosocial Oncology Group at the Brighton and Sussex Medical School, East Sussex, United Kingdom.
Conflicts of interest:
Ms. Mayer, Ms. Glennon, Ms. Caplan, and Dr. Fallow eld are consultants to Pfizer. Ms. Mayer, Ms. Glennon, and Dr. Fallow eld have received honoraria from P zer. Ms. Glennon is a consultant to and has received honoraria from Merck. Ms. Caplan’s organiza- tion (Living Beyond Breast Cancer) has received unrestricted educational grants from Pfizer.
Acknowledgments: The authors and Pfizer Inc. would like to extend their thanks to all of the women with metastatic breast cancer who participated in this survey and to those who generously allowed us to quote their words. The BRIDGE Survey was supported by funding from Pfizer Inc. and was conducted by Harris Interactive. Medical writing support was provided by Nicola Crofts, PhD, at ACUMED (Tytherington, United Kingdom) and was funded by Pfizer Inc. Further information on the BRIDGE Survey can be found at http://www.bridgembc.com.
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