The Metastatic Breast Cancer Project

Patient and Care Team. Cancer Care Northwest, Spokane, Washington

The Association of Community Cancer Centers (ACCC) Metastatic Breast Cancer Project is an education initiative that addresses the communications needs and issues of women and men living with metastatic breast cancer. The primary goal of this initiative is improving the treatment and management of metastatic breast cancer in the community setting. Avon Breast Cancer Crusade, the Cancer​ Support Community​, and the Metastatic Breast Cancer Alliance are sharing their expertise and resources as ACCC partners in this initiative, with funding and support provided by Pfizer Oncology.

"The ACCC Metastatic Breast Cancer Project directly addresses a need identified as part of our Breast Cancer: A Story Half Told initiative—the need to generate more productive discussions between physicians and patients with metastatic breast cancer," said Julia Perkins Smith, MD, North America Medical Affairs Lead, Pfizer Oncology. "Pfizer is deeply committed to helping meet the unique needs of the MBC community, and we are excited to support the innovative work ACCC is doing in this area. Like ACCC, our hope is that this project will enable patients with MBC to gain a better understanding of their disease and have a stronger voice in their treatment decision-making."

Communication Issues

For patients: A diagnosis of metastatic breast cancer has inherent communication issues; it is frequently misunderstood. Sometimes, even patients have difficulty understanding when their oncologist speaks to them about their metastatic disease, the need for lifelong treatment, anticipated side effects, and how their disease will impact on their quality of  life and life expectancy.

Initially, many patients are overwhelmed by their diagnosis and what they are being told; they are reluctant to ask questions. Even as patients continue in treatment, some patients don’t share their fears with members of their care team or ask for the emotional support they need. They often confine their discussions with the medical oncologist to managing side effects, and the effectiveness of the current treatment.

According to an online survey report conducted by the Cancer Support Community, a majority of metastatic breast cancer patients reported having good communication with their health care team. Yet 2 out of 5 patients stated they did not discuss deeper concerns about their emotional health, treatment, symptoms, and quality of life.

“Individualized information about metastatic breast cancer is a critical factor for informed participation in treatment decision-making. Information also plays an important emotional role in reducing uncertainty, lack of control and distress. Yet, many patients do not receive adequate information from their health care teams; their understanding of the nature of the disease and treatment goals is often poor; many believe they will be cured. Limitations of time and resources in busy oncology practices may result in poor patient-doctor dialogue, including one-way “doctor-knows-best” communication. Patients also report confusion about reliable sources of information.” reported Katherine Crawford-Gray, Director of the Metastatic Breast Cancer Alliance.

For the public: While there is widespread awareness of breast cancer as a result of messages appearing on TV and radio, and in print media, these messages usually focus on early stage breast cancer, not Stage IV, metastatic breast cancer. Yet, estimates put the number of patients living with metastatic disease at between 150,000 and 250,000 in the U.S.  Each year, 40,000 metastatic patients die of the disease. About 6-10 percent of all newly diagnosed breast cancers are metastatic. Between 20-30 percent of all breast cancers will become metastatic, occurring 5, 10, 15+ years following treatment for an early stage breast cancer.

Metastatic breast cancer is the most advanced stage of breast cancer, with the cancer having spread beyond the breast to distant organs such as the lungs, liver, brain  and bone. Although it is treatable, it is not curable. It does not fit with the “feel good” messages about surviving breast cancer often communicated on television, radio and in the press.

Given that metastatic patients live in a culture  where survivorship is thought of as the usual outcome after completing treatment, many with metastatic disease feel like outsiders within the breast cancer community. They are often asked by family and friends to explain why they have to be in treatment for the rest of their lives.

According to the Metastatic Breast Cancer (MBC) Alliance, public messaging about the breast cancer ‘cure’ and survivorship is so pervasive that people diagnosed at Stage IV with metastatic breast cancer can be stigmatized by the perception that they’ve failed to take care of themselves or undergo annual screening.

Overview of the Metastatic Breast Cancer Project

Marianne Gandee, Assistant Director, Provider Education, ACCC, describes the Project as, “Our Metastatic Breast Cancer education program seeks to empower MBC patients by giving their health care providers tools and resources to address gaps in care and improve communication between patients and providers."

The Project Will Provide:

  • Site visits to facilities with programs that demonstrate effective practices in treatment and patient management.
  • Information sharing as to the current state of metastatic breast cancer treatment and patient management.
  • A web page and app
  • Education materials suitable for use by all members of the cancer care team.
  • A workbook on effective practices in caring for metastatic breast cancer patients.
  • Access to the Cancer Support Community’s Cancer Experience Registry: Metastatic Breast Cancer.
  • In 2007, the development of operational plans to assist ACCC member programs improve treatment and management of women and men with metastatic breast cancer.  

The Association of Community Cancer Centers, a national advocacy and education organization since 1974, is a forum for dealing with issues that affect community cancer programs nationwide. As such, ACCC can utilize its resources and that of its partners in the Metastatic Breast Cancer Project to reach and assist its members in addressing the communication needs of patients with metastatic breast cancer. Members include over 22,000 cancer care professionals from 2,000 hospitals and practices nationwide.  Community oncologists treat more than 75 percent of cancer patients .

ACCC President Jennie R. Crews, MD, MMM, FACP stated, “As we strive to deliver personalized, patient-centered care, we must empower patients to participate fully in two-way conversations with their providers.” The Metastatic Breast Cancer Project is designed to do just that by expanding the current breast cancer conversation to address gaps in communications between early and metastatic disease; and improve communications around the treatment and management of metastatic breast cancer in the community oncology setting.

Partner Roles in the Metastatic Breast Cancer Project

"The Avon Breast Cancer Crusade is proud to help shine a bright light on the unique needs of MBC patients and their families and advance the capability of the breast cancer community as a whole to better meet these needs," said Carolyn Ricci, Program Director, Avon Breast Cancer Crusade.

“The Metastatic Breast Cancer Alliance believes that partnerships, such as the one we have with the Association of Community Cancer Centers for their Metastatic Breast Cancer Project, are critical if we are to influence significant changes that lead to improving the quality and quantity of life for people living with metastatic breast cancer.  Our role in working with the ACCC is to bring the expertise of our members to the research and development of initiatives. One of the benefits for the Alliance is that we will better understand the communication needs of community cancer clinics and, hopefully, be able to have a more active role in working with the centers to meet these needs.

The Alliance has commissioned Dr. Corrine Ellsworth Beaumont to research the communication barriers that exist and propose new ways of addressing them. As a result of the Phase One of this research, we are piloting a Communication Tool Kit that is based on visual design with minimum text. Our partnership with ACCC in their Metastatic Breast Cancer Project helps provide their membership with knowledge of and access to this innovative resource,” said Katherine Crawford-Gray, Director of the Metastatic Breast Cancer Alliance.

The Cancer Support Community's Cancer Experience Registry, the only registry of its kind, allows patients and caregivers to share their unique experiences to help to improve the quality of life for people living with a cancer diagnosis. A special section of the Registry is dedicated to understanding the social and emotional needs of people living with metastatic breast cancer. Information pulled from the Registry will provide partners with cutting-edge trends around the challenges associated with metastatic breast cancer. These findings will aid in the development of tailored resources and tools and help advance patient-centered care," said Joanne Buzaglo, PhD, Senior Vice President, Research and Training Institute of the Cancer Support Community.

A Word From Verywell

If you have metastatic breast cancer, you need and deserve a cancer care team that is open to answering your questions and takes the time to listen to how you are feeling. If you are newly diagnosed, unless you have a satisfactory relationship with an oncologist who managed your treatment for an earlier breast cancer, you will need to find a medical oncologist. It is a good idea to meet with two or more oncologists before choosing who will manage your ongoing care. 

In addition to speaking about your treatment plan, these meetings will give you an opportunity to determine your comfort level with each oncologist as he or she will be an integral part of your care​. You need to feel that you can speak to your medical oncologist and other members of your care team about any and all concerns that are impacting on your quality of life. 

Joining a support group of metastatic breast cancer patients will help reduce the isolation you may be feeling. It will give you the opportunity to share with others who can relate to what you are experiencing.

Joining the Cancer Experience Registry section for women and men living with metastatic breast disease  is a good way to share your experiences, access resources, and learn from others with metastatic breast cancer.The registry is an online community. It is free, confidential, and accessible to anyone who has been diagnosed with cancer or is a caregiver for a cancer patient.

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