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Information and support to move forward
A metastatic breast cancer diagnosis can feel like a shock to the system. If you’ve recently been diagnosed, we know that you may be experiencing intense emotions and uncertainty. At the same time, we also know people are living longer with metastatic breast cancer. Advances in imaging and treatment approaches have helped make that happen.
Adjusting to a diagnosis of metastatic breast cancer is different for each person, and it’s an ongoing process. There may be times when you fear for the future, or you feel less confidence in your body or in the people who support you. These are normal responses to grieving the small, and large, losses metastatic breast cancer can cause. Let yourself experience these emotions. You are not alone. Ask for help when you need it. Many people gain great strength from talking with others who’ve been diagnosed and can share in your experience. Some people find themselves thriving after a metastatic breast cancer diagnosis because of a newfound focus on the parts of life that bring the most meaning.
In this video, medical oncologist Tufia Haddad, MD, shares information on diagnosis, treatment, and supportive care that can help you in the first few months after a metastatic breast cancer diagnosis. She also explains how the COVID-19 pandemic may affect diagnosis and treatment plans. Shonte Drakeford, an LBBC Hear My Voice advocate who lives with metastatic breast cancer, is our host.
Understanding more about your situation and treatment options can reduce some of the pressure that comes with the overwhelm of diagnosis. Talking with your doctor, asking questions, and reading trusted resources can often bring a new sense of empowerment. When you’re feeling more confident, it’s a little easier to tune into how your body is feeling.
Breast cancer is considered stage IV, or metastatic, when it travels outside the breasts and nearby lymph nodes to other organs in the body. Between 20 and 30 percent of early-stage breast cancers later become metastatic. In the U.S., between 3 and 6 percent of first-time breast diagnoses are stage IV. This is called de novo metastatic breast cancer.
After a metastatic breast cancer diagnosis, sometimes the first thing people look for is information on how many years they may live. This is completely understandable. Still, other people prefer not to research this topic. If you do choose to read about life expectancy after a metastatic breast cancer diagnosis, it’s important to know that your unique situation could be very different than what you see in the general survival rate numbers that are currently available. If you’re concerned about life expectancy, talk with your doctor. Ask to have a candid discussion about it. You can also ask to talk with your cancer center’s oncology social worker if you want extra support.
A key part of research after diagnosis is making sure you’re comfortable with the doctor guiding your care. Your doctor and medical team will be your partners as you navigate metastatic breast cancer treatment. If you don’t yet have a medical oncologist, here are some tips for finding one:
Your research should include looking at the doctor’s education and years of experience and hearing feedback from people who’ve seen the doctor. But the right fit isn’t only about experience. If the doctor seems like a good fit on paper, meeting in person can also help you decide. For instance, what does it feel like to have a conversation with this person? Are your concerns being heard? Do you feel a sense of trust and support? Consider this as you do your research and meet potential physicians.
“Metastatic breast cancer is a complex disease that requires patients and physicians to work collaboratively in order to minimize side effects and maximize quality of life,” says Saveri Bhattacharya, DO. “It is important that physicians know a patient's values and a patient understands the disease trajectory.”
If you are under the care of a medical oncologist now, but you’re not sure it’s the right fit, seeking a second opinion is a good way to explore other possible doctors.
No matter what your starting point is, Living Beyond Breast Cancer is here to guide you through comprehensive information about metastatic breast cancer so you can start to make a plan and move forward.
It took me a while to digest the indefiniteness of a metastatic diagnosis. But once I understood, I accepted my reality and was able to continue to start living in the moment. That is the challenge.”
You have questions. We have resources
It takes time to adjust to a metastatic breast cancer diagnosis. It’s a shift that can feel deep and layered. Trying to learn a lot of new information while processing intense emotions is not a normal experience! It’s important to pace yourself, take breaks, and to know when to reach out for support.
Part of adapting to your diagnosis is learning to recognize symptoms and treatment side effects. Some of these can mimic symptoms of other conditions, so it’s always important to let your healthcare team know what you’re experiencing.
Depending on where cancer is in your body, symptoms can include:
Common treatment side effects include:
Adapting to a diagnosis of metastatic breast cancer is a series of ongoing adjustments over days, months, and years. It’s not uncommon to realize one day that you’ve come through changes you never anticipated facing, and that you have new emotional muscles. You may discover that you’ve been able to walk into, and through, many periods of uncertainty — a skill some people spend a lifetime trying to master.
Metastatic breast cancer is a marathon. There are times when it’s flat ground and it’s easy, and times when you’re running uphill. We just don’t know what's around the corner anymore, because the pace of change is faster than at any time in the history of cancer treatment.”
Although metastatic breast cancer isn’t curable, it is treatable. The goal of treatment is to keep the cancer under control while reducing symptoms and side effects so you can have the best possible quality of life.
There are many different kinds of treatments available for metastatic breast cancer, including
Research is changing the treatment of metastatic breast cancer. It may be surprising to learn that most people starting treatment for metastatic breast cancer do not begin with chemotherapy. Many people start with hormonal therapy or targeted therapy.
Among the newer metastatic breast cancer treatments that have been developed because of research are these targeted therapies:
These are just a few examples. You and your healthcare team can work together to create a tailored treatment plan for you. If the cancer’s response to treatment changes over time, your plan can be adjusted to help ensure you’re continuing to receive the most effective treatment. And any time you’re considering a treatment is a good time to ask your doctor about opportunities to participate in a clinical trial. Clinical trials provide access to treatments that may be very effective but are not yet FDA-approved.
“I think the most exciting aspect of metastatic breast cancer management for the near and mildly distant future is the further refinement of genomically driven treatment,” says Pallav Mehta, MD. “Breast cancers, like most solid tumors, often have several driver mutations and continue to acquire new mutations as the cancer progresses. We're getting better not just at identifying these mutations, but also at understanding what these aberrant genes actually do to the cell. And we’re getting better at designing drugs that can target the protein product of these genes.
“A second exciting advance is in the field of immunotherapy, which is a way to have the patient's own immune system wake up from the stupor induced by the cancer and do its job, which is to protect the house,” says Dr. Mehta. “CAR T-cell therapy [immunotherapy that alters a person’s immune cells to target cancer] is exciting, checkpoint inhibitors are showing some promise, and even vaccines have relevance again.”
It’s important to remember that you are not meant to manage this diagnosis all by yourself. It’s a lot. And we know that asking for help can sometimes feel really difficult. We get it, and we’re here for you.
There are many resources that can help if you feel overwhelmed, including
Learn more about how to build your own community of support.
There are also resources available to help with physical and financial needs, such as
Whatever you are feeling, allow yourself to experience it. A metastatic breast cancer diagnosis comes with different worries at different times. No one expects you to be strong, brave, or together all the time. No one expects you to handle this alone.
We are grateful to the Metastatic Breast Cancer Network for their support and contributions to the content found in this section.
From letting go of people in their lives who don’t “get it” to connecting to people who do (be it family, friends, or in an organized support group), a diverse group of women open up about the importance of a community of support while navigating the complex medical, emotional, and financial challenges that come with a metastatic breast cancer diagnosis.
What are the latest advancements in treating metastatic breast cancer?
Precision medicine uses information from the breast cancer to select the most effective treatment. Newer treatment options in metastatic breast cancer include CDK 4/6 inhibitors, immunotherapy, antibody-drug conjugates, and other medicines that target specific features in cancer cells. Learn more about metastatic breast cancer treatment options.
Does metastatic breast cancer usually spread to a specific part of the body first?
The most common locations for breast cancer metastases are the liver, bones, lungs, and brain.
Can metastatic breast cancer go into remission?
Metastatic breast cancer is not considered curable, but there can be periods where tests show no evidence of disease, often called NED. Reaching NED may not always be possible. It's also possible to have times when the cancer does not grow, called stable disease. Learn more about what makes metastatic breast cancer different.
Can I use alternative medicine instead of conventional therapy for metastatic breast cancer?
Living Beyond Breast Cancer does not support or recommend alternative medicine, which is used in place of standard medical care. The best approach to cancer care includes managing side effects, with or without complementary or integrative therapies, in addition to conventional care from your doctors. Learn more about complementary and integrative therapies.
Reviewed and updated: June 11, 2022
Reviewed by: Saveri Bhattacharya DO