Hearing the words “You have metastatic breast cancer, and you will need ongoing treatment” can be traumatic. We’ll help you begin to make sense of your diagnosis, treatment options, and sources of support.
You may be feeling an overwhelming flood of emotions. Anger, loss, confusion, fear, and numbness are all normal feelings to have in a situation that feels anything but normal. You didn’t plan on having this experience; there’s no “right” way to feel, and feelings can change. It’s important to know that while metastatic breast cancer is not considered curable, it IS treatable — and even if things feel out of control right now, it is absolutely possible to continue living a life that makes you feel fulfilled.
Whether you’re already familiar with breast cancer or this is your first diagnosis, the next few days, weeks, and months may feel challenging. You’ll hear new medical terms, undergo more diagnostic tests, and meet medical professionals you may not have needed in the past. Adapting to ongoing treatment may take time, and that’s okay. It’s a lot to absorb, and it will happen when it happens. Working with your healthcare team to come up with a plan can sometimes bring a sense of greater control.
Know that whatever you are feeling, the LBBC community is here with you, sharing information, connection, and support whenever you need it.
From managing “scanxiety,” depression, and other emotional concerns to the benefits of getting out of the house, even planning a vacation, a group of women living with metastatic breast cancer engage in real and sometimes raw conversation about how they cope and find comfort and joy in making plans.
Being diagnosed with metastatic breast cancer can happen to anyone at any time, regardless of previous cancer stage or type. In this section, we’ll walk you through how metastatic breast cancer happens and how the characteristics of the cancer can help you and your healthcare team decide on the best treatment options for you.
When breast cancer metastasizes, the cancer cells enter the lymphatic channels or the bloodstream and spread to the lymph nodes or other parts of the body, such as the bones, lungs, liver or brain. Though cancer at any stage can become metastatic, metastatic cancer is the term used to refer to stage IV cancer.
Metastatic breast cancer may be your very first breast cancer diagnosis, or it may be an earlier breast cancer that has come back.
With stage IV disease, it’s difficult to fully remove cancer with surgery or medicine. New tumors may appear over time, or cells may stop responding to different treatments. While there is currently no cure for metastatic breast cancer, it’s possible to experience periods during which tests show no evidence of disease (NED). While reaching NED may not always be possible, it’s likely that you will have periods when the cancer does not grow. This is called stable disease.
While your experience of ongoing treatment may shift and change over time, enjoying activities, discoveries, and connections that feel good can always be part of your life.
Breast cancer subtypes are determined by the cancer cells’ reaction to the hormones estrogen and progesterone — usually recognized by the presence of hormone receptors in the cells (referred to as hormone receptor status) — or too much of the HER2 protein, called the HER2 status.
Breast cancer treatment is often tailored to specific subtypes so it can directly disrupt the processes that make the cancer grow. Your pathology report will include the type of cancer you have, and whether it is a single type or a combination of types.
In recurrent breast cancer, the original subtype can sometimes change by the time the cancer metastasizes. Between 15 and 20 percent of metastatic cancers have different pathology traits than at early-stage diagnosis. If you’ve been diagnosed with recurrent metastatic breast cancer, ask your doctor about performing a new biopsy and new subtype tests. The results can help ensure you’re getting the most effective treatment options for your type.
Here are the known breast cancer subtypes:
In addition to subtype, your doctor will also note how the cancer grows (in a sheet or in a mass) and the proliferation index, which tells what percentage of the cancer cells are actively dividing.
If you have a surgical biopsy to test the cancer tissue, the information collected becomes part of your pathology report, a profile of the tissue-testing results. These results include information about the cancer’s hormone-receptor and HER2-receptor status, and they help determine the most effective treatment.
In some cases, such as in brain or bone metastases, the location may make biopsy difficult, so your doctors will rely on scans, symptoms, and blood work to confirm your diagnosis instead.
Like any illness, cancer has its own vocabulary. If this is your first diagnosis, it may be helpful to keep a running list of terms you want defined to help you make sense of everything. Don’t be afraid to ask your doctor, nurse, or other medical professional to explain what they mean more clearly.
Listen to your body. It’s a matter of knowing how treatment will affect you. Don’t eliminate living by any means.
The main goal in treating metastatic breast cancer is choosing the treatments that will get rid of tumors and outlying cancer cells in the most effective way. In this section, we’ll talk about the main treatment options used in metastatic breast cancer.
Because metastatic breast cancer is treatable but not curable, it is important to know that at times, treatments may not seem as aggressive as those given for early-stage breast cancer. This is because treatment for early-stage breast cancer is short-term, with the goal of getting rid of all the cancer, while treatment for metastatic breast cancer relieves symptoms over the long term.
The most common treatments available for metastatic breast cancer are chemotherapy, hormonal therapy, targeted therapy, surgery, and radiation therapy. If a treatment stops working, you and your doctor will talk about new options.
Some treatments impact the whole body, while others affect only part of it. Chemotherapy, hormonal therapy, and targeted therapies are systemic, meaning they travel through the bloodstream and treat the whole body. Surgery and radiation therapy are local, only affecting cells in and around tumors. Most treatments will be given either by vein or as a pill taken by mouth.
Below, you can learn more about the most common metastatic breast cancer treatments:
You and your doctor will likely have an ongoing discussion about a treatment plan that supports your quality of life. Let your doctor know what’s important to you. Maybe it’s playing with your kids or traveling. Maybe it’s biking or aerobics, or making music or art. Whatever brings you joy, you and your doctor can come up with a plan that allows you to keep that joy in your life. Sometimes, this means making modifications or taking temporary activity pauses, but once your doctor understands what means the most to you, you can create that plan together.
Visit metastatic breast cancer treatment for more details on specific types of treatment. And while every treatment has potential side effects, there are lots of ways to manage them if they happen.
You can also download our free Guide for the Newly Diagnosed, part of our metastatic breast cancer guide series.
Your doctor may suggest you receive treatment through a clinical trial, a research study that tests how well new medicines and procedures work in people. Clinical trials either compare standard FDA-approved treatments to new treatments, or study new therapies. All of today’s standard therapies were once part of clinical trials.
If you’ve never been part of a clinical trial, it’s understandable if you have questions or concerns about the safety of treatments being tested. But clinical trials mean close monitoring by study doctors and nurses — often more closely than in standard care. There are also many laws and regulations in place to safeguard participants in clinical trials.
Here are additional benefits of participating in a clinical trial:
Sometimes it’s better to enroll in a study before you try other standard treatments because some trials only include people who have not taken certain medicines in the past. Joining a clinical trial before you try other treatments may give you more options over a longer period. If you think you may be interested in a clinical trial, talk to your doctor early in your care so you have more options.
You can also read our Guide to Understanding Clinical Trials for more details.
Feeling lost?
Hear how Cheryl did
Cheryl, a physician, wife, and mother of three, shares how being diagnosed with metastatic breast cancer while pursuing her dream job as a physician affected her sense of self. Learn about her experiences in this Can and Did podcast episode.
Living well with metastatic breast cancer means different things to different people. But living well and living fully are very possible.
It’s common to feel many different emotions after a metastatic breast cancer diagnosis. One of those feelings may be grief, a deep sadness and distress caused by loss. We sometimes feel grief at the loss of things we thought we’d always have: our sense of self, our physical abilities, even our future plans. Everyone experiences grief in their own way.
In this section, we’ll talk about ways you can take care of yourself through these feelings, including complementary care such as exercise and meditation, emotional support such as psychotherapy, and social and spiritual support.
Today, many programs and cancer centers offer treatment plans that integrate traditional medicine with complementary care practices to fully support your physical, emotional and spiritual wellness. By caring for the whole person, integrative treatment plans can strengthen your body, ease your mind, bring you calm, or even help you discover what is most important to you.
Talk with your providers about your interest in complementary practices. Any additions to treatment, such as herbs, vitamins, or supplements, may impact traditional medicines. If your doctor is not familiar with complementary approaches or not sensitive to your desire to use this in your care, you may want to consider adding an integrative medicine specialist to your healthcare team.
For more information, visit Complementary and integrative medicine for metastatic breast cancer.
Coping with intense emotions such as grief can be complicated, and sometimes we can’t do it alone. Many people find comfort and support in talking to a mental health professional such as a psychotherapist, or joining a support group. Social workers at your cancer center can help you find support groups in person and online:
Social support provides connection to maintain a healthy emotional life. Having friends, family, or peers for emotional support and a social life outside of cancer can keep you enjoying the connections that matter most to you. Scheduling time with family and friends helps you make sure you get to see the people most important to you. There may be times when treatment schedules and doctors’ appointments get in the way, so making dates can help your relationships stay on track. Maintaining connections can make life feel whole and satisfying.
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.
Spiritual support can help some people find a sense of calm, peace, or deeper faith. Talking with a religious leader or a spiritual counselor may help you explore your feelings.
Spirituality is different for everyone, and comes in the form of traditional religious practices as well as devotion to an activity or purpose, such as community service or art.
Church and prayer groups are available at many cancer centers, hospitals, and churches, and may even focus on metastatic cancer. Ask your cancer center social worker for suggestions.
Spiritual counseling or guidance is offered by both traditional religious institutions and holistic wellness centers.
For more information about all of the topics on this page, read our free Guide for the Newly Diagnosed.
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