Diagnosed with metastatic breast cancer

Understanding and coping with your diagnosis

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.

Video: Telling stories, making meaning: Coping & making plans

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.

Understanding metastatic breast cancer

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.

How metastatic breast cancer happens

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.

• If this is your first cancer diagnosis, you may hear your healthcare team use the term “de novo metastatic breast cancer” to describe it. It’s possible your doctors discovered you have breast cancer because you had symptoms in a different area of your body, such as your bones. Breast cancer cells remain breast cancer cells no matter where they are. Even when cancer cells spread to a different area of the body, your doctors will still treat them as breast cancer.
• If you had breast cancer in the past, this new diagnosis may be referred to as “recurrent” breast cancer. In a recurrence, some of the primary cancer cells survived the treatments you may have had after your early-stage diagnosis. Your doctors may decide to do a confirming biopsy (surgical removal and testing of a piece of cancerous tissue) to ensure the tumor cells remain similar to those at your original diagnosis. If the characteristics of the cancer have changed, you and your doctor can choose treatments that target those characteristics.

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.

Understanding the cancer’s subtype and behavior

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:

• Hormone receptor-positive or negative: Normal cells have high levels of both estrogen and progesterone receptors. Cancer cells that grow in response to certain hormones test positive for those hormone receptors; those that do not test negative. For the hormones estrogen and progesterone, hormone-receptor status is often expressed as “ER+/-” and “PR +/-.”
  • Hormone-sensitive cancers may respond to medicines called hormonal therapies. Hormonal therapies block estrogen from binding to cancer cells, lower estrogen levels, or reduce the number of estrogen receptors on the cells.
  • In some cases, the cell will have high levels of estrogen receptors but few or no progesterone receptors. Tumors that are ER+ but PR- may be more aggressive and less sensitive to hormonal therapies.
  • Tumors that are both ER+ and PR+ usually respond to hormonal therapies. Any hormone sensitivity makes you a candidate for hormonal therapy.
• Human epidermal growth factor receptor 2-positive or negative (HER2 +/-): The HER2 protein is part of normal cell growth, but in some cancer cells the amount of HER2 proteins is too high. This is called HER2-positive breast cancer and can be treated with anti-HER2 therapies.
• Triple-negative breast cancer: These types of cancers test negative for estrogen and progesterone receptors and HER2, which means the cancer cells grow without estrogen, progesterone, or HER2 proteins present. These cancers do not respond to anti-HER2 or hormonal therapies. Triple-negative cancers usually respond to chemotherapy.

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.

Your pathology report

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.

Understanding new terms

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.

Understanding treatment options

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.

Common treatment options

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:

• Surgery, a local treatment, can sometimes ease or prevent symptoms and side effects at the original or metastatic site (for example, the brain). If one or a few metastatic sites remain stable over time, surgery may be used to remove the disease. Ongoing trials are exploring surgery to remove the primary tumor in people with metastatic disease, so talk with your doctor about the latest findings.
• Chemotherapy, a systemic therapy, is given by infusion into a vein or access port or is taken as a pill. Chemotherapy kills rapidly dividing cells to slow or stop the cancer’s growth. An access port, sometimes called a port-a-cath, is a small device under the skin that allows access to your veins. Another option is a PiCC line (peripherally inserted central catheter), a long, flexible tube inserted into a vein in the arm that gives access to larger veins. Decisions about chemotherapy depend on the type of cancer you have, your age and treatments you’ve had in the past. Ask your doctor about the physical and emotional side effects of chemotherapy. Let your doctor know what’s comfortable for you and what isn’t.
• Hormonal therapies are targeted, systemic treatments used to treat hormone receptor-positive breast cancer. These treatments block estrogen or lower the amount of estrogen in the body and reduce the growth of hormone-receptor positive cancer. In hormone-sensitive metastatic breast cancer, hormonal therapies are often the starting point for treatment. Hormonal therapy is the most effective approach for this type of cancer and has fewer side effects than chemotherapy.
• Targeted therapies are systemic treatments that attack specific proteins or genes on or within cancer cells that help the cells grow. Targeted therapies include medicines that treat HER2-positive metastatic breast cancer. Others under study, such as PARP inhibitors and anti-VEGF therapies, target specific processes involved in cell and tumor growth.
• Radiation therapy, a local therapy, works to damage cancer cells in specific areas of the body. In metastatic breast cancer, radiation therapy is used to shrink tumors and ease pain.

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.

Clinical trials and your treatment

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:

• Access to new medicines: You may get access to new medicines and treatment approaches not available outside of a trial. They may work better or have fewer side effects than standard treatments.
• Saved costs: Some trials provide access to medicines, complementary therapies, or supportive care at no charge.
• Helping others like you: It might feel good to know that your participation may help not just you but others living with breast cancer — now and in the future.

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.

Maintaining your well-being

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.

Complementary care

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.

• Exercise helps keep the body strong and muscles relaxed. Certain types, such as yoga, have been shown in studies to have healing benefits in breast cancer by reducing fatigue and stress and improving sleep.
• Nutrition can help you maintain a strong and well-nourished body. During treatment, good nutrition prepares your body for medicines and for healing over time.
• Mind-body practices use the mind to calm stress and anxiety. These include yoga, hypnotherapy, meditation, visualization, and music and art therapy.
• Meditation and mindfulness exercises combine meditation, yoga, and awareness of the body. These practices can teach you about your body’s physical responses to stress and how to relieve that stress.
• Body work therapies focus on physical sensation as a source to relieve pain and tension. These include therapeutic massage, acupuncture, and acupressure.
• Personal activities such as art, music, sports, or writing can be a great outlet for stress and can offer you time alone to process news, decisions, or emotions.
• Chinese and herbal medicines are natural supplements that are believed to target the buildup of toxins and regulate the flow of fluids and energy in the body.

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.

Emotional support: Therapy and support groups

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:

• Counseling and individual therapy offer you the chance to voice concerns you keep to yourself in a safe, nonjudgmental setting. Many people withhold fears or worries to avoid upsetting or burdening others. A counselor or therapist is someone you can talk to who is outside your usual life. If you begin to feel overwhelmed by your diagnosis and the changes in your life, seek support right away. Don’t be afraid to try a few different providers. It may take time to find the right therapist for you.
• Support groups provide a place to meet and talk with others coping with breast cancer. Talking with people in similar situations can ease isolation and help you feel more connected. Support groups are also a good way to learn about new resources. Not everyone feels comfortable in every support group. If you want a support group but the first one you try doesn’t meet your needs, seek out another. Ask your doctor or the social worker at your cancer center for support group recommendations.
• Peer counseling services allow you to talk to someone with a metastatic breast cancer diagnosis who has been in treatment like you. When you are first diagnosed, it may be hard to imagine living months or years with metastatic disease. Many people find that talking to someone who has done just that can ease worry and pressure. You can reach LBBC’s Breast Cancer Helpline online or by calling toll-free at (888) 753-5222. Or, visit Metastatic Breast Cancer Network for a list of available telephone resources.

Social support

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.

Video: Telling stories, making meaning: Finding your people

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

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.