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Conclusions

Information about the epidemiology of MBC is currently lacking.
• Prevalence and incidence of MBC. The prevalence and incidence of patients with
MBC is unknown. Also unknown is whether the number of recurrent MBC patients
is increasing, decreasing, or staying the same. Without this information, we cannot
accurately and effectively demonstrate the need for services or plan and fund the
application of services.
• Disease course by population and MBC subtype. Disease trajectories, outcomes, and
patient experiences for the different subtypes of MBC have not been well characterized.

• Impact of MBC treatment. Many critical questions regarding the optimal treatment of
MBC remain unresolved. It is imperative that the use, effectiveness, and impact of MBC
treatments on the overall MBC population be understood.
• Length and variability of MBC survival. Despite existing research, we have no
accurate estimate of how long MBC patients are likely to live. The factors underlying
observed variability in median survival across studies are unknown. Among the potential
factors are differences in access to newer drugs (especially targeted therapies) and
multiple lines of treatment, access to careful follow-up and expert palliative care to
preserve optimal quality of life, and the presence of co-morbidities.

• MBC disparities. Despite research demonstrating poorer outcomes for disadvantaged,
underinsured populations overall, we don’t know the true impact of socioeconomic
factors on what treatment and care are available for MBC patients and, in turn, how this
may affect duration of survival and quality of life.

For the past 30 years, the breast cancer community has been a leader in patient support,
advocacy, and research. Advocates have a pivotal role to play in the planning and implementation
of future research. The MBC Alliance can continue to lead the way by helping policy makers and
other MBC stakeholders to establish the blueprints for collection of epidemiologic data that will
allow patients with MBC to be followed, to be visible, and to finally count.

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