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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.

There are many new and ongoing scientific discoveries improving metastatic breast cancer care and offering hope to many.

Learn what Komen is doing to help people with metastatic breast cancer.

A diagnosis of metastatic breast cancer

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. No matter your situation, the diagnosis is difficult.

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 were dormant (inactive) and could not be detected. Then for some unknown reason, the cancer cells began to grow again. This process is not well-understood.

Learn more about getting a second opinion.

Prognosis

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 [1]. Some women live 10 or more years beyond diagnosis [2].

If you have questions about your prognosis, talk with your health care provider.

Learn about treatment for metastatic breast cancer.

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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

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, you can’t get rid of all the cancer that has spread to other parts of the body.

Metastatic breast cancer can, however, be treated. Treatment focuses on extending life and maintaining quality of life.

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. Learn about clinical trials for people with metastatic breast cancer and access Metastatic Trial Search, a web-based clinical trial matching tool.

Learn about treatment for metastatic breast cancer.

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KOMEN PERSPECTIVES

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.

Your health care providers 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, seek a second opinion.

Many 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.

Questions 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 take it with you to your next doctor appointment. There’s plenty of space to write down the answers to these questions, which you can refer to later.

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.

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. 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 Cancer Clinical Trial Information Helpline

If you or a loved one needs information or resources about clinical trials, call the Komen Breast Cancer Clinical Trial Information Helpline at 1-877 GO KOMEN (1-877- 465- 6636) or email clinicaltrialinfo@komen.org.

The helpline offers breast cancer clinical trial education and support, such as:

  • Knowing when to consider a trial
  • How to find a trial
  • How to decide which trial is best
  • What to expect during a trial
  • Information about clinical trial resources

 Learn about clinical trials for people with metastatic breast cancer and access Metastatic Trial Search, a web-based clinical trial matching tool.

Side effects

Treatments for metastatic breast cancer 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.

Depression

It’s common to get depressed while living with metastatic breast cancer. Let your health care providers 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

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. In fact, it’s estimated there were more than 168,000 women living with metastatic breast cancer in the U.S. in 2020 [1].

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

  • If you or a loved one needs more information about breast health or breast cancer, call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636). All calls are answered by a trained specialist or oncology social worker in English and Spanish, Monday through Friday from 9:00 a.m. to 10:00 p.m. ET. You can also email the helpline at helpline@komen.org.
  • We offer an online support community through our closed Komen Metastatic Breast Cancer group. The Facebook group provides a place where those living with metastatic breast cancer, and those who love them, can find support, friendship and information. Visit Facebook, search for Komen Metastatic Breast Cancer (Stage IV) Group and request to join the closed group.
  • Our free monthly MBC Impact Series provides people living with metastatic breast cancer and their loved ones a safe, collaborative 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 https://komen.org/mbcseries.
  • Our Family and Friends section has detailed information and resources for loved ones.
  • Our fact sheets, booklets and other education materials offer additional information.

*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.

Updated 04/19/21

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