Living with Metastatic Breast Cancer (November 2016) Any diagnosis of breast cancer can be shocking -- but none more so than a diagnosis of metastatic cancer, the most advanced stage of breast cancer. Its seriousness brings unique challenges for patients, their families and other loved ones.
Treatment and other supportive care for people with metastatic breast cancer focus on length and quality of life.
What is metastatic breast cancer?
Metastatic breast cancer (also called advanced or stage IV breast cancer) is breast cancer that has spread beyond the breast and axillary lymph nodes (those in the underarm area) to other parts of the body, most often the bones, lungs, liver or brain.
How common is it?
Only about 5 percent of women in the U.S. have metastatic disease when they are first diagnosed with breast cancer .
More often, metastatic cancer develops months or years after an initial diagnosis and treatment of an earlier-stage breast cancer.
The risk of early stage breast cancer returning and spreading varies greatly from person to person.
Can metastatic breast cancer be treated?
Although metastatic breast cancer cannot be cured, it can be treated. Treatment can lengthen life and provide relief from cancer-related symptoms.
What affects prognosis?
Survival for metastatic breast cancer also varies greatly from person to person.
One study found about 37 percent of women live at least 3 years after a diagnosis of metastatic breast cancer . Some women may live 10 years or more beyond diagnosis .
With today's therapies, and newer ones being tested, these numbers are likely to keep improving.
According to Dr. Wendy Chen, a breast medical oncologist at the Dana-Farber Cancer Institute, “Recent advances in the treatment of metastatic breast cancer can help to prolong length of life and quality of life. The best treatment course can be very different for different people."
How is metastatic breast cancer treated?
Treatment of metastatic breast cancer is highly personalized. It depends not only on the cancer but also on the importance a person places on his or her own potential benefits and harms of specific treatments.
Some treatments have side effects that can lower quality of life. There is also the possibility a particular treatment may not offer much benefit for a particular patient.
So, patients must balance whether the possible benefits of a treatment outweigh the impact it can have on quality of life. This balance can shift over time.
Together with their oncologists, people with metastatic breast cancer can find the balance of treatment and quality of life that is best at each stage of care.
Treatment plans are guided by many factors, including: Characteristics of the cancer cells (such as estrogen receptor status and HER2 status) Where the cancer has spread Symptoms Past breast cancer treatments Person’s goals Person’s strength or physical condition The most common treatments for metastatic breast cancer include:
Hormone therapy for estrogen receptor-positive (ER-positive) cancers Anti-HER2 targeted therapies for HER2-positive cancers Chemotherapy for all cancers, regardless of type For people with metastatic breast cancer that has spread to the bones, additional drugs are used to improve bone strength and prevent fractures.
Radiation therapy can be used to treat some areas in the body where the cancer has spread and is causing symptoms or pain. For example, radiation therapy may be used to ease the pain of cancer that has spread to the bones.
Surgery is not commonly used for metastatic breast cancer as it has not been shown to improve survival .
What about joining a clinical trial? Like all aspects of cancer care, the decision to join a clinical trial is a very personal one.
Clinical trials can provide an opportunity to try new treatments and possibly benefit from them. They also allow people to contribute to the science of breast cancer treatment that will benefit others for years to come.
But, they may have some downsides as well. For example, clinical trials have restrictions on who can enroll, and they often require travel to a study location.
Some clinical trials compare a new treatment to the standard of care. So, not everyone in the trial will get the new treatment. However, even those who don’t get the new treatment will get the standard treatment, just as if they did not join the trial.
Patients with metastatic breast cancer should talk with their oncologists about a clinical trial when a current treatment stops working and the oncologist recommends changing treatment.
What happens when I stop cancer treatment? The decision to stop treatment for metastatic breast cancer is a very personal one that a patient makes together with his or her oncologist. A person may decide to stop active cancer treatment because it has stopped helping or because it greatly impacts quality of life.
Once treatment for the breast cancer has stopped, palliative care becomes the main focus of treatment.
What is palliative care? Palliative care is a type of health care that centers on the management and prevention of symptoms and side effects related to cancer and its treatment, such as pain, nausea, and fatigue.
Palliative care works best when it’s integrated early in metastatic cancer care, no matter the prognosis or type of treatment.
Palliative care also helps patients and family members address spiritual and emotional issues and get support for making decisions about treatments and other care. It also includes grief counseling.
Studies have found palliative care improves patients’ quality of life and maintains or improves survival .
Who provides palliative care? In many cases, a patient’s primary oncology team is able to provide most of the palliative care .
Unfortunately, some doctors still equate palliative care with end-of-life care and may delay referring someone to palliative care until very late in life.
To get the most from palliative care, patients and their families may need to be open and proactive in asking their oncology teams for help with symptom management or other issues related to palliative care.
What about end-of-life or hospice care? End-of-life care is a key part of palliative care that focuses on meeting the needs of patients and their families toward the end of life.
Hospice is a specific part of end-of-life care that works to preserve quality of life and allows a person to die as comfortably as possible. Hospice care can begin when a patient has less than six months to live and active cancer treatment has stopped.
Hospice is usually given at home. It can also be given as in-patient care at a freestanding hospice house or at a hospital with hospice services.
What about social support? Taking care of emotional needs is an important part of living with metastatic breast cancer.
Social support can reduce anxiety, stress and depression [7-9]. Whether it’s informal support (such as from family, friends and religious organizations) or more formal support (such as from counseling in a one-on-one or group setting), social support can improve the emotional well-being and quality of life for people with metastatic breast cancer.
Are there resources to help with financial issues? On top of the other challenges of metastatic cancer care, there can also be important financial issues to deal with.
Treatment for metastatic cancer can continue for years, which can be a financial burden not only because of health care bills but also because of lost work time -- both for the patient and family.
A person’s oncologist should know about local financial assistance resources. And most hospitals or medical centers have financial counselors or patient navigators with experience in the financial issues of cancer care.
In addition, the Komen Breast Care Helpline: 1-877 GO KOMEN (1-877-465-6636) can provide information about local organizations and resources that may provide financial assistance and other support services.
Summary Metastatic breast cancer brings unique challenges for patients as well as their families and other loved ones.
While metastatic breast cancer cannot be cured, treatment and palliative care aim to lengthen life and help maintain quality of life.
Palliative care provides relief for symptoms related cancer and its treatment. It should begin as soon as possible after diagnosis, regardless of the prognosis or stage of treatment.
As part of palliative care, end-of-life care and hospice play an important role in helping patients and their families address the end of life with as little pain and with as much dignity as possible.
What is Komen doing to address the needs of metastatic breast cancer patients? Recently, Susan G. Komen announced a bold goal to reduce the nation’s 40,000 breast cancer deaths by 50 percent in 10 years, by improving access to quality and timely cancer care for the underserved and enhancing Komen’s research focus on lethal breast cancers, including metastatic breast cancer.
Komen research grants and programs As the largest nonprofit funder of breast cancer research (investing more than $920 million since inception), Komen has invested more than $166 million in over 400 research grants and more than 40 clinical trials that focus on understanding why metastasis occurs and how to treat it.
Identifying the genes and processes that cause breast cancer cells to metastasize Developing and testing new therapies to prevent and treat metastatic breast cancer Discovering new methods for predicting or detecting metastasis using urine or blood tests, or body scans To learn more about Komen’s research on metastatic breast cancer, please read the Research Fast Facts.
Metastatic Breast Cancer Alliance On October 13, 2013 (National Metastatic Breast Cancer Awareness Day), Komen joined forces with 15 other breast cancer charities and 5 pharmaceutical companies to form the Metastatic Breast Cancer Alliance. The Alliance has now grown to 40 members.
The mission of the Metastatic Breast Cancer Alliance is to unify the efforts of its members to improve the lives of and outcomes for those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding specifically focused on metastasis that has the potential to extend life, enhance quality of life, and ultimately to cure.
As its first initiative, the Alliance undertook a landscape analysis to assess the gaps and opportunities in metastatic breast cancer research, patient information, support services and public awareness to capitalize on identified opportunities, and identify the ways Alliance members could work together to meet the unique needs of those living with metastatic breast cancer.
The key findings from the landscape analysis were:
A lack of awareness about metastatic breast cancer and how it differs from early stage breast cancer Limited funding for metastatic breast cancer research - research funding for metastatic breast cancer accounted for only 7 percent of the total breast cancer research investment A lack of accurate statistics on incidence, prevalence and survival for metastatic breast cancer While information and support services exist for those living with metastatic breast cancer, these resources were difficult to find Members of the Metastatic Breast Cancer Alliance work together to address these gaps by:
Advocating for progress in research that will extend life, enhance the quality of life and ultimately end death from metastatic breast cancer Striving to ensure that all metastatic breast cancer patients and their caregivers know how to, and are able to access the care and services they need from a responsive and well-informed healthcare system Educating those diagnosed with MBC, their families, healthcare providers, researchers and health policy influencers and policymakers on metastatic breast cancer and how it differs from early-stage breast cancer For more information on the MBC Alliance, go to: http://www.mbcalliance.org/.
BreastCancerTrials.org BreastCancerTrials.org in collaboration with Susan G. Komen offers a custom matching service to help you find a clinical trial for people with metastatic breast cancer.
Komen resources Treatment
Treatments for Metastatic Breast Cancer
Quality of Life
Quality of Life-Metastatic Breast Cancer
Perspective: Palliative Care for Breast Cancer - Important and Often Underused
Support for People with Metastatic Breast Cancer
Symptom Management and Supportive Care - Metastatic Breast Cancer
How to Find Financial Assistance