Newly Diagnosed with Metastatic Breast Cancer
Read our blog, Looking Back Helps Me See the Progress I’ve Made Against Metastatic Breast Cancer.
A metastatic breast cancer diagnosis is 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 in the U.S. and around the world are living with metastatic breast cancer.
Research continues to improve treatment and care for people with metastatic breast cancer, offering hope to many.
Susan G. Komen®‘s Metastatic Breast Cancer (MBC) Impact Series
Susan G. Komen’s free MBC Impact Series provides people living with metastatic breast cancer and their loved ones a safe, space to gather information related to MBC and discover practical resources to help make decisions for improved physical and emotional health. To learn more and register visit www.komen.org/mbcseries.
A diagnosis of metastatic breast cancer
A diagnosis of breast cancer is difficult, no matter your situation. You may have been diagnosed with breast cancer many years ago or perhaps you’ve only recently completed treatment for early breast cancer. 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 feel better prepared to face the challenges ahead.
Take time to process the information from your health care provider. You may want to get a second opinion. This may help you get a different insight into your diagnosis and treatment options. Many cancer centers now offer second opinions in a virtual format (such as a phone or video consult).
Remember, a diagnosis of metastatic breast cancer is not your fault. You did nothing to cause the cancer to spread.
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 could not be detected. Then for some unknown reason, the cancer cells began to grow again. This process is not well-understood.
Prognosis (chance of survival)
Modern treatments continue to improve survival for most people diagnosed with metastatic breast cancer. However, survival 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 . Some women live 10 or more years beyond diagnosis .
If you have questions about your prognosis, talk with your health care provider.
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.”
As hard as it is to hear, metastatic breast cancer cannot be cured today. Unlike breast cancer that remains in the breast or nearby lymph nodes, medical treatments can’t get rid of all the cancer that’s spread to other parts of the body.
Metastatic breast cancer can be treated though. Treatment focuses on extending life and maintaining quality of life.
There are many kinds of treatment for metastatic breast cancer. Your treatment plan is guided by many factors, including:
- The biology of the tumor (characteristics of the cancer cells)
- Whether you have a BRCA1 or BRCA2 inherited gene mutation
- Where the cancer has spread
- Your symptoms
- Past breast cancer treatments
- Your overall health, age, menopausal status and other medical issues
- Personal goals and preferences
Your personal preferences play a large role in your treatment and care. Talk with your oncologist and other health care providers about your goals and the things that are important to you (avoiding some side effects, for example). This will help your health care providers personalize your treatments to your preferences.
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 about treatment for metastatic breast cancer.
Learn more about getting a second opinion.
Read our perspective on living with metastatic breast cancer.*
Talk with your health care providers
You’ll meet with your oncologist, nurses and other health care providers often. They will 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 for each treatment.
Talk with your health care providers about any concerns or questions you may have. Your health care providers can also address any quality of life issues.
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, get a second opinion.
Some cancer centers now offer 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 provider
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.
It may be helpful to download and print Susan G. Komen®‘s Questions to Ask Your Doctor About Metastatic Breast Cancer resource and write on it at your next doctor’s appointment. Or, you can download, type and save it on your computer, tablet or phone during a telehealth visit using an app such as Adobe. Plenty of space and a notes section are provided to jot down 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.
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. 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® Breast Care Helpline
If you or a loved one needs information or resources about clinical trials, call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877- 465- 6636) or email firstname.lastname@example.org.
The helpline offers 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.
Learn more about clinical trials for people with metastatic breast cancer.
Metastatic breast cancer treatments and the cancer itself can cause side effects.
It’s important to tell your health care providers about any side effects you have. They can help you control pain and manage other side effects. This is called palliative care.
Learn how pain is managed.
Learn how other side effects are managed.
Learn about quality of life issues.
It’s common to get depressed while living with metastatic breast cancer. Let a member of your health care team know how you are feeling emotionally.
Depression can (and 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. We have some information that may help.
Learn about end-of-life care and hospice.
You are not alone
Many women and men have been where you are today. It’s estimated there were more than 168,000 women living with metastatic breast cancer in the U.S. in 2020 (most recent estimate) .
It may be helpful to talk with others. You might consider a cancer support group. Your health care provider may be able to help you find a local support group or a counselor if you prefer meeting in a one-on-one setting.
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® SUPPORT RESOURCES
*Please note, the information provided within Komen Perspectives articles is only current as of the date of posting. Therefore, some information may be out of date.