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CHAPTER 1:

INTRODUCTION

Metastatic breast cancer (MBC), also known as stage IV, is an incurable, albeit treatable,
progressive cancer that originates in the breast and then spreads or metastasizes to other
parts of the body such as bones, liver, lungs, or brain.

MBC is the cause of virtually all deaths from breast cancer. For people diagnosed with
MBC, managing the disease becomes part of their daily life. Patients change treatments as
drugs cease to work and the cancer progresses. Psychologically, the emotional distress of
[4]
an MBC diagnosis can be worse than that of diagnoses of early stage breast cancer . Public
messaging about the “cure” and survivorship is so pervasive that people diagnosed at stage IV
with MBC can be stigmatized by the perception that they’ve failed to take care of themselves or
undergo annual screening. The challenges patients and their caregivers face in finding MBC-
specific support and information from the organizations focusing on early stage breast cancer
can exacerbate feelings of loneliness and isolation.

Driven by a desire to address the unique needs of those living with MBC, advocate organizations
have joined forces as the Metastatic Breast Cancer Alliance (MBC Alliance) to address these
challenges. The MBC Alliance brings together some of the most active advocates for patients
with breast cancer, the 3 largest private funders of breast cancer research in the US, and 6
pharmaceutical corporations. The Alliance was publicly launched on MBC Awareness Day—
October 13, 2013—when it announced its first initiative, a landscape analysis that sought to:

• Assess gaps, duplication, and opportunities in MBC research, patient information and
support services, and public awareness to capitalize on identified opportunities, and

• Identify the ways in which Alliance members could work together to meet the unique
needs of those living with MBC.

We are pleased to present the following body of work, which is the outcome of research
undertaken over the past year by the MBC Alliance. Patient advocates and experts with
knowledge and experience specific to the area of investigation examined various aspects of the
MBC landscape:

• Scientific research, including clinical trials, focused on MBC
• Quality of life of MBC patients and their families and caregivers

• Information and support services provided by MBC Alliance members

• Epidemiology of MBC: Challenges with population-based statistics
• Public Awareness of MBC.

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