This year approximately 40,000 Americans will die from metastatic breast cancer, but it is estimated that over 160,000 people are currently living with this diagnosis. Metastatic breast cancer is another term for Stage IV breast cancer, which means the cancer has spread from the breast to other areas of the body.
An overlooked concern
While the United States has established excellent prevention and screening programs for breast cancer patients across the country, metastatic breast cancer is not addressed by many of these programs. About 5 to 8 percent of patients will have metastatic disease at initial diagnosis, while another 20 percent of patients treated for early stage breast cancer will ultimately develop Stage IV breast cancer despite appropriate treatment. These patients are often underserved and stigmatized for their diagnosis. Being diagnosed with metastatic breast cancer can happen to anyone at any time. It is rarely due to inadequate screening, treatment or lifestyle choices.
Support and communication
For metastatic breast cancer patients, receiving clear communication from their cancer care team is critical to their care and the decisions they make for treatment. These decisions can impact the quality of their life. Patients must be empowered to make decisions with their care team that reflect their goals, such as returning to work, spending more quality time with family and minimizing side effects.
The Association of Community Cancer Centers (ACCC) is an organization that is comprised of cancer programs and includes all members from the cancer care team — doctors, nurses, social workers, pharmacists and others. ACCC has been working with cancer care teams and patient advocacy groups nationwide to identify ways to improve the communication between metastatic breast cancer patients and their cancer care team. Through this work, ACCC is helping create greater awareness in the cancer care team, so that they can support and empower their metastatic breast cancer patients.
An example of this is ACCC member Saint Luke’s Cancer Institute and Saint Luke’s Koontz Center for Advanced Breast Cancer in Kansas City — a comprehensive, dedicated center focused exclusively on improving outcomes and quality of life for metastatic breast cancer patients and families. In addition to the availability of clinical trials and personalized treatments, their clinic has all the support services a patient might need throughout their care, centralized under one roof. These services include emotional counseling for the patients and their family members, nutritionists, support groups, exercise therapy, financial and insurance assistance, and more. The care team at the Koontz Center meets regularly to touch base on their individual interactions with the patients, to ensure that any new symptoms or problems are identified and addressed early. Patients treated at Koontz Center know that they are receiving the most up-to-date care and are supported by an entire team of care providers.
In a patient’s words
Metastatic breast cancer patients are unique. Kelli M. Davis, a patient and advocate with Metavivor and METUP.org, shares that “my care team creates a dynamic, multi-disciplinary approach focused on my unique mutational base. My medical oncologist is leading research that is our best chance to living longer and better with metastatic breast cancer. Thanks to engaging oncologists like mine, we not only have a seat in the conversation, we are actively setting our own table.”
If you or someone you love is living with metastatic breast cancer, make sure that your cancer care team is engaging you and helping you to make decisions that support what you want and how you want to live. From a patient being treated at Saint Luke’s Koontz Center: “my health care team positioned this as a disease that is treatable, even if it’s not curable… this is a disease we will LIVE with.”