Newly Diagnosed with Metastatic Breast Cancer
Read our blog, Looking Back Helps Me See the Progress I’ve Made Against Metastatic Breast Cancer.
Watch our MBC Impact Series, Ask Your Quality of Life Questions.
Listen to our Real Pink podcast, Impact of Diagnosis on Your Mental Health.
A metastatic breast cancer diagnosis is life-changing and can feel devastating. You’re processing a lot of information and dealing with many emotions. You may feel overwhelmed and scared, but you’re not alone. Many people are living with metastatic breast cancer.
Research continues to improve treatment and care for people with metastatic breast cancer, offering hope to many.
Pam Kohl, living with metastatic breast cancer
“Be intentional about creating memories. Experience the joy you can find now.”
Susan G. Komen® Metastatic Breast Cancer (MBC) Impact Series |
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Susan G. Komen’s MBC Impact Series provides people living with metastatic breast cancer and their loved ones a safe, collaborative space to gather information related to metastatic breast cancer and discover practical resources to help make decisions for improved physical and emotional health. During the free events, you can participate in sessions with leading experts, hear from individuals living with metastatic breast cancer and gather information from wellness experts. You’ll also have the opportunity to ask our speakers questions. To stay up to date about event topics and timing, sign up for our MBC Newsletter here. You can also learn more and register for events by visiting www.komen.org/mbcseries. |
A diagnosis of metastatic breast cancer
A diagnosis of breast cancer is difficult, no matter your situation. You may have completed treatment for early breast cancer many years ago, or perhaps you’ve only recently completed treatment. For some, this is your first breast cancer diagnosis, which can be especially shocking.
When you’re ready, learn about your treatment options and other parts of your care, such as managing side effects. This may help you feel in control and be better prepared to face the challenges ahead.
Take time to process the information from your health care team. You may want to get a second opinion. This may help you get a different insight into your diagnosis and treatment options. Some cancer centers provide second opinions in a virtual format (such as a phone or video consult).
Some people have metastatic breast cancer when they’re first diagnosed with breast cancer. This is called de novo metastatic breast cancer. However, most metastatic breast cancers come from breast cancer cells that remained in the body after treatment for early breast cancer. The breast cancer cells were always there but couldn’t be detected. Then for some unknown reason, the cancer cells began to grow again. This process is not well-understood.
Remember, a diagnosis of metastatic breast cancer isn’t your fault. You did nothing to cause the cancer to spread.
Prognosis (expected course of disease)
Modern treatments continue to improve survival for most people diagnosed with metastatic breast cancer. However, prognosis varies greatly from person to person.
About one-third of women diagnosed with metastatic breast cancer in the U.S. live at least 5 years after diagnosis [1]. Some women live 10 or more years beyond diagnosis [1].
Your oncologist can give you some information about your prognosis, but they don’t know exactly how long you will live.
Data for men with metastatic breast cancer are limited.
Learn about treatment for metastatic breast cancer.
Sandi Spivey, lived 20+ years with metastatic breast cancer
“When you’re diagnosed with metastatic breast cancer, it’s normal to grieve. You grieve the life you expected to have. Now all of that has changed. You have to process this grief before you can heal. Although the grief never ends, it gets less intense over time.
You may feel guilty about being ill, even though it’s not your fault. Palliative care can help you find a way to move past these feelings. Then you can figure out how you want to live the rest of the chapters in your life-book.”
Treatment
Metastatic breast cancer cannot be cured today. However, metastatic breast cancer can be treated. Treatment focuses on extending life and maintaining quality of life.
There are many treatments for metastatic breast cancer. Your treatment plan is guided by:
- The biology of the tumor, including biomarkers (such as hormone receptor status and HER2 status)
- Where the cancer has spread
- Your symptoms
- Your past breast cancer treatments
- Whether you have a BRCA1 or BRCA2 inherited gene mutation
- Your overall health, age, menopausal status and other medical issues
- Your personal treatment goals and preferences
Your personal preferences play a large role in your treatment and care. Talk with your family and your health care team about your goals and the things that are important to you (avoiding some side effects, for example). This will help your health care team personalize your treatments to your preferences. Talk with them throughout your care and let them know that your wishes may change over time.
If you haven’t started treatment yet, you may want to consider a clinical trial.
It’s always OK to get a second opinion at any time during your treatment.
Learn more about treatment for metastatic breast cancer.
Learn more about getting a second opinion.
Pam Kohl, living with metastatic breast cancer
“Understand where you are. If you’re at a place in your life where your quality of life is a higher priority in some ways, you get to decide that. You decide with your doctor about whether or not you want to take a holiday from treatment or how harsh of a treatment you want to go through. And your choices can change over time. Just because you make one decision today doesn’t mean you have to live with that decision forever.”
Your health care team
Throughout your care, you’ll get care from many health care providers. Your health care team may include:
- Doctors involved in cancer treatment (such as medical oncologists)
- Doctors involved in other care for people with metastatic breast cancer (such as radiologists, pathologists, and palliative care or pain specialists)
- Your primary care doctor
- Nurses
- Genetic counselors
- Patient navigators
- Social workers
- Mental health providers (counselors, clinical social workers, psychologists and others)
- Dietitians
- Physical therapists
- Pharmacists
- Integrative care specialists
- Other health care providers
Talk with your health care team
You’ll meet with your oncologist, nurses and other health care providers often. They’ll become a big part of your life. So, it’s important to feel comfortable talking with them about your care, your physical health and how you’re doing emotionally.
Your oncologist will discuss your treatment options (and their possible benefits and risks) with you. Your oncologist or nurse can also help you make a timeline of any tests or exams you need before starting any treatment. This will help you know what to expect.
Talk with your health care team about any concerns or questions you may have. They can also address any quality of life issues.
Second opinions
It’s always OK to get a second opinion at any point during your care. A second opinion may give you a different insight into your diagnosis and may increase your options for care.
Also, if you’re not happy with your care or you’re not connecting with your health care provider, consider getting a second opinion.
Some cancer centers provide second opinions in a virtual format (such as a phone or video consult). We’ve created a simple checklist with some great tips to help you prepare for a successful virtual visit and a podcast to help you get the most out of it.
Before getting a second opinion, it’s best to check with your insurance company to see if there are any limits. Some policies may only cover second opinions from doctors in their own network.
Learn more about getting a second opinion.
Questions you may want to ask your health care team
You’re processing a lot of information and dealing with many emotions.
You may not know what questions to ask your oncologist, nurse or other health care providers. To help you get started, we have a list of questions to ask your health care providers about your diagnosis and treatment.
Susan G. Komen®‘s Questions to Ask Your Doctor About Metastatic Breast Cancer resource may also be helpful. You can download and print it to take with you to your next doctor’s appointment or you can save it on your computer, tablet or phone using an app such as Adobe. Plenty of space and a notes section are provided to write or type the answers to the questions.
There are other Questions to Ask Your Doctor resources on many different breast cancer topics, such as our Questions to Ask Your Doctor About Clinical Trials resource, you may wish to download. They are a nice tool for people recently diagnosed with metastatic breast cancer who may be too overwhelmed to know where to begin to gather information.
The National Comprehensive Cancer Network (NCCN) has an animated video on how to talk with your doctor about metastatic breast cancer.
Clinical trials
Many new treatments for metastatic breast cancer are under study in clinical trials. Most of these are drug therapies.
Clinical trials offer the chance to try new treatments and possibly benefit from them. Clinical trials are not just for people late in their disease course.
Sometimes, a clinical trial is available as the first treatment for metastatic breast cancer. So, if you haven’t started treatment yet, now is a good time to talk with your oncologist about clinical trials. There may be a clinical trial that would be a good option as a first treatment for you.
If you’ve already started treatment, talk with your oncologist about clinical trials that may offer treatment options later.
Susan G. Komen® Patient Care Center |
If you or a loved one needs information or resources about clinical trials, the Patient Care Center can help. Contact the Komen Breast Care Helpline at 1-877-465-6636 or email clinicaltrialinfo@komen.org. The Patient Care Center navigators offer breast cancer clinical trial education and support, such as:
Se habla español. |
Metastatic Trial Search |
The Metastatic Trial Search is a web-based clinical trial matching tool that can help you find clinical trials that fit your needs. You can also register to receive Trial Alerts. |
Learn more about clinical trials for people with metastatic breast cancer.
Side effects
Metastatic breast cancer treatments can cause side effects and the cancer itself can cause symptoms.
It’s important to tell your health care team about any side effects and symptoms you have. They can help you control pain and manage other side effects and symptoms. This may be called palliative care or symptom management.
Learn how pain is managed.
Learn how other side effects and symptoms are managed.
Learn about quality of life issues.
Depression
It’s common to feel depressed while living with metastatic breast cancer. Let a member of your health care team know how you’re doing emotionally. Depression needs to be treated.
Learn more about depression.
Learn about coping with stress.
End-of-life care and hospice
When the time comes, it’s natural to worry about end-of-life issues. You may also have questions about hospice care. We have information that may help.
Learn about end-of-life care and hospice.
You’re not alone
Many women and men have been where you are today. It’s estimated there were more than 168,000 women in the U.S. living with metastatic breast cancer in 2020 (most recent estimate) [2]. Men can also have metastatic breast cancer.
It may be helpful to talk with others. You might consider a cancer support group. Or you may prefer talking one-on-one with another person living with metastatic breast cancer through a peer mentoring program. You could consider meeting with a counselor as well.
Your health care provider may be able to help you find a local support group, counselor or other resources.
Learn more about support groups, counseling and other types of support for people with metastatic breast cancer.
Learn about social support for loved ones.
SUSAN G. KOMEN® METASTATIC BREAST CANCER SUPPORT RESOURCES |
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Updated 05/16/24
