Living With Metastatic Breast Cancer
Resources, expertise, and survivor support to help you after a diagnosis

To help you along the way in the weeks and months after a metastatic breast cancer diagnosis, SurvivorNet has developed this series called Living With Metastatic Breast Cancer.

The series is designed to help you navigate some of the challenges that lay ahead, such as navigating treatment options, making a treatment plan, and beyond.

Handling a New Diagnosis

I have metastatic breast cancer — now what? Navigating a new diagnosis

Take notes, talk to family: Tips from an oncologist

At this point, you’ve likely already had the phone call or met with your doctor and were told you have metastatic breast cancer. Metastatic means that the cancer has spread to distant parts of the body. This diagnosis may seem scary and it’s natural to be experiencing an array of emotions right now — but it’s important to remember that there are many treatment options available.

With that being said, we understand this is a hard time. In this section of Living With Metastatic Breast Cancer, we’ll go over how to keep track of all the new information you’re getting — and offer some guidance on how to cope with emotions that can feel overwhelming.

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There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis. Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips for patients:

  • Have someone come with you to the doctor — It is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.
  • Take notes — Writing down what you hear can help you focus and create a record of the information so you can refer to it later on.
  • Don’t be afraid to get a second opinion — Your doctor won’t be offended if you get a second opinion. It is extremely important to go through the process with a doctor you trust — and make sure you’re getting the best care possible with a doctor you feel comfortable with.

After a diagnosis, be kind to yourself

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“How am I going to get through this?” It is often one of the first questions a person will ask after a cancer diagnosis.

“My advice is to take one day at a time and be kind to yourself,” Dr. Susan Parsons, Director of Survivorship Care at Tufts University, said.

Survivors also tells us it’s key to ask for the support you need — both mentally and physically. There is life after diagnosis, so the goal is to keep hopeful and strong, and cut yourself some slack.

Understanding Your Disease

What type of breast cancer do you have?

It’s critical to remember there are still many treatment options available for patients with later-stage breast cancer. The treatment approach will depend on many factors about your individual disease — and may involve surgery, chemotherapy, radiation, targeted therapies, or a combination of multiple approaches.

Doctors treating breast cancer look for markers on your particular cancer to help decide what course of treatment is best for you. That’s because cancer cells may have what are called receptors that help identify the unique features of the cancer.

The workup to determine the best course of treatment for breast cancer may include:

  • Additional mammography
  • A breast biopsy
  • Blood tests
  • Bone scan
  • Breast MRI
  • Brain MRI
  • CT scan
  • PET scan
  • Immunohistochemistry (IHC) test to look for estrogen/progesterone receptors as well as
  • HER2/Neu receptors
  • Next Generation Sequencing
  • Liquid Biopsy
  • Genetic testing

The unique features of breast cancer

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Doctors treating breast cancer look for markers on your particular cancer to help decide what course of treatment is best for you. That’s because cancer cells may have what are called receptors that help identify the unique features of the cancer.

The three main receptors are the estrogen receptor, the progesterone receptor, and the HER2 receptor. The estrogen and progesterone receptors go together because they are fueled by hormones. Think of the cancer cell as having little hands on the outside of the cell which grab hold of proteins that help it grow. These proteins are sometimes called “ligands.”

An example of a type of ligand that can stimulate a cancer cell is the hormone estrogen. An estrogen receptor-positive breast cancer will be stimulated by estrogen to grow. In this instance, your doctor may offer you treatment to specifically target the estrogen receptor.

Another important receptor to test for is the HER2 receptor. For HER2 positive breast cancers, therapies that uniquely target the HER2 receptor are essential to treating the disease.

Surgery or chemo first? How treatment order is determined

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There are many factors that go into determining which breast cancer treatments a patient will be given, and what order those treatments will be given in.

Dr. Elisa Port, Chief of Breast Surgery at Mount Sinai Health System, explained to SurvivorNet that there are certain subtypes of the disease such as HER2-positive breast cancer or triple-negative breast cancer that sometimes benefit from having treatment first and then surgery.

“It’s very tailored, personalized precision medicine approach, for not only the person, but also the tumor,” Dr. Port said.

How can genetic testing help determine treatment?

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Genetic screening may be ordered for patients whose doctors suspect may have inherited a genetic mutation such as BRCA that puts them at risk for developing cancer. These tests can be useful in directing therapy and may also be useful for the patient’s relatives to better understand their risk of developing breast cancer.

Genetic sequencing of tumors has become standard practice, according to many experts.

The test allows doctors to understand some of the changes or mutations that may have evolved in a tumor.

This can help your doctor determine what the best course of treatment is for your individual disease — and they may be able to recommend a targeted therapy. The results you get from testing the tumor may also help your doctor determine if you are a good candidate for a clinical trial.

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Next Generation Sequencing allows for the tumor to be assessed for several genetic changes at the same time. Many of the drugs used in the treatment of breast cancer are targeted to specific mutations found in the tumor. As we move into the era of precision medicine, molecular profiling has become critical in directing treatment.

What to know about molecular testing for breast cancer

Treatment Options

What are the treatment options for metastatic breast cancer?

While metastatic, or stage four, breast cancer is not considered curable, there are many treatment options available that can drastically improve the quality of life for people living with advanced breast cancer.

There have been incredible advances in treating metastatic breast cancer in the past few years alone. What sort of treatment your doctor recommends will depend on factors like your overall health, genetics, the biology of the tumor, and more.

Treatment for metastatic breast cancer may involve:

  • Hormone therapy
  • Chemotherapy
  • Targeted therapy
  • Immunotherapy
  • Surgery
  • Radiation

Your doctor may also recommend using a combination of these approaches.

In this section of Living With Metastatic Breast Cancer, we’ve rounded up some of the latest advances in treating the disease — and when they can be used.

CDK4/6 inhibitors for breast cancer explained

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For hormone receptor positive breast cancer, hormone therapy remains the mainstay of treatment. this include drugs such as anastrozole or fulvestrant. These drugs work to decrease the amount of estrogen produced by the body or by blocking the estrogen receptor itself limiting its activity with the goal of slowing the rate at which that cancer cell can expand.

For postmenopausal women with hormone-receptor-positive and HER2-negative breast cancers, a newer class of drugs called CDK4/6 inhibitors are available. these drugs work by disrupting the cell cycle thus preventing cancer cells from multiplying. These drugs have been shown to improve survival in some women with metastatic cancer. These new drugs are typically combined with hormone therapy such as anastrazole or fulvestrant.

Promising new data from a recent trial showed that patients with this specific type of breast cancer who received a CDK4/6 inhibitor called Ribociclib (sold under brand names Kisqali and Kryxana), plus endocrine therapy, had a 25% lower risk of recurrence or death.

Still, it’s very important that patients talk to their doctors to understand the risks vs. benefits.

The risks vs. benefits of CDK4/6 inhibitors

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Dr. Eleonora Teplinsky, Head of Breast Medical Oncology at Valley Health System, told SurvivorNet that it’s important for patients to understand the difference between “relative risk and absolute risk.”

While there was a 25% lower chance of cancer coming back among the population that did take Ribociclib in the NATALEE trial, “that translates into a 3.3% absolute risk,” she explained. “When you look at the numbers, 87.1% of patients who did not receive Ribociclib did not experience a recurrence compared to 90.4% of patients who did receive Ribociclib and did not experience a recurrence.”

She continued, “I think the challenge if you were a patient and trying to figure this out is, how do you know if you would fall into that 3.3%? And, and we don’t know.”

Treatment options for advanced HER2 and HER2-low breast cancers

For women with HER2-positive breast cancer, meaning they have high levels of a protein called HER2 on the surface of their cancer cells, targeted treatments are available.

Exciting new research has also indicated that women with metastatic HER2-“low” breast cancer may have new options as well.

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For women with HER2-positive breast cancer, the drugs trastuzumab (Herceptin) and pertuzumab (Perjeta) have transformed the outlook for some women with late-stage breast cancers.

These therapies, which are often combined with chemo, are very effective at controlling breast cancer once it has spread.

Women with metastatic HER2-“low” breast cancer may have new options as well. In the past, doctors divided patients into two categories based on HER2 expression: HER2 positive tumors and HER2 negative tumors.

Recently, however, researchers have looked to further expand this definition to include patients who have a minimal amount of HER2 expression but do not meet the classic definition for HER2-positive tumors. ENHERTU (Trastuzumab deruxtecan) is a new drug that have been approved in the treatment on HER2-“low” metastatic breast cancer and may be used in select patients.

In triple negative breast cancer, new drug Trodelvy extends life

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Another big advancement has come in the treatment of triple-negative breast cancer. This has historically been one of the most aggressive and hardest to treat forms of the disease, because it lacks any of the main drivers of breast cancer the estrogen receptor, the progesterone receptor, and the HER2 receptor and it doesn’t respond to treatments that target these receptors.

Now, in addition to chemotherapy, immunotherapy has been approved to treat triple-negative breast cancer in select patients. In studies, this new therapy has been shown to extend the lives of women with this type of cancer.

Recently, a new antibody drug conjugate, Trodelvy (Sacituzumab Govitecan), showed promise in extending life and progression-free survival in some women with triple negative breast cancer as well.

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Patients with triple negative metastatic breast cancer may be candidates for immunotherapy with PD-1 inhibition. The Combined Positive Score (CPS) is used to assess the level of PD-L1 expression on your tumor cells. A score greater than or equal to 10 indicates a sufficient level of PD-L1 expression to warrant combination chemotherapy and immunotherapy typically with pembrolizumab.

Next generation sequencing (NGS) has allowed for oncologists to test for a variety of genetic alterations to better target your cancer. PIK3CA mutations that are detected may be eligible for combination Alpelisib with Fulvestrant. High Tumor mutational burden may allow for a patient to receive immunotherapy such as pembrolizumab. Other potential targets include the NTRK gene fusion which may be targeted with Entrectinib or similar agents.

Germline BRCA 1/2 mutations may be present in a small number of metastatic patients but if positive can be eligible for targeted therapy with a PARP inhibitor such as Olaparib.

Preparing for Treatment

Assembling your treatment team

It can be challenging to find a doctor and decide where to get treatment. When you’re stressed, it’s easy to overlook some options.

We’ve consulted several experts in the field to get advice about planning during this early stage of the treatment process and to learn why it’s incredibly important to establish a trusted doctor-patient relationship — no matter what sort of treatment you end up undergoing.

Should I consider a multidisciplinary center?

Seeking out second opinions (you can — and you should!)

“What would you do if someone in your family got cancer?” We put that question to some of the most renowned cancer doctors in the country.

National Cancer Institute Chief of Surgery Steven Rosenberg recommends seeking out multiple professional opinions to confirm a diagnosis and figure out the options. Highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

Why the doctor-patient relationship matters

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Although there will always be limitations on how much time a doctor can spend with any given patient, the doctor-patient relationship is extremely important after a cancer diagnosis.

You’ll want to make sure you are working with a doctor you trust, who will respect your opinion and keep you informed about all of the treatment options for your particular diagnosis.

Dr. Nina Shah, a hematologist at UCSF Medical Center, stressed the importance of patients feeling comfortable enough to voice concerns to their doctors.

“It’s on us to make sure that we are emotionally available to the patients, and as available as we can be with our time, although there are always limitations there,” Dr. Shah explained.

Part of the doctor-patient relationship involves the patient feeling seen and heard — and advocating for themselves where they see fit.

Breast Cancer Types

How are different types of breast cancer treated differently?

When your doctor is determining the treatment for your particular cancer, in addition to looking into whether the cancer has spread, they will also look at the biology of the tumor.

They will need to determine things like: is your tumor positive for the HER2 receptor or hormone receptors? Did you inherit an increased risk for breast cancer and/or did your lifestyle increase your risk?

Breast cancer is not one disease, but many different diseases. Here are some treatment considerations for some of those different types.

Hormone therapy for breast cancer

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Hormone therapy for breast cancer is one line of defense in the vast tool kit for treatment.

It’s used for hormone receptor-positive cancers, which are the most common types of breast cancers. When a tumor is “hormone receptor-positive,” it means that a pathologist has run special tests on the cancer to determine that it is positive for either the estrogen and/or progesterone receptor.

What is tamoxifen? How is it used?

Estrogen blockade therapy is an important component of treatment especially in hormone receptor positive metastatic breast cancer. Aromatase inhibitors such as anastrozole or estrogen receptor antagonists such as fulvestrant are frequently used. There are side effects for some patients, many of which mimic menopause (like hot flashes), but they can be managed.

How is triple-negative breast cancer treated differently?

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Triple negative breast cancer means that your cancer does not express any of the three main types of receptors: estrogen, progesterone, or the HER2 protein on the cell surface.

Because of this, the cancer won’t respond to certain targeted therapies including hormone therapy or Her2-targeted agents like Herceptin. Chemotherapy is typically the treatment and there are several options.

Triple negative breast cancer is an aggressive form of the disease and if the cancer is advanced, your doctor may also recommend participation in a clinical trial that involves immunotherapy or targeted therapies.

Treating HER2-positive breast cancer

There are also several drugs that have improved overall survival for patients with HER2-positive metastatic breast cancer. Women who are diagnosed with HER2-positive breast cancer have high levels of the HER2 protein on the outside of their cancer cells. For patients with metastatic disease, adding Herceptin (trastuzumab) and Perjeta (pertuzumab) to chemotherapy and/or hormone therapy is a potential option. Other Her2 directed therapies such as Lapatinib may be offered as well.


A promising new drug for treating 'HER2-low' breast cancer

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HER2 “low” may become a new commonly classified subtype of breast cancer. HER2 “low” as a breast cancer type would include approximately 50% of all patients and opens the door for new treatments and research.

A new study of the experimental drug Enhertu, presented at the annual meeting of the American Society of Clinical Oncology, gives hope to women with metastatic HER2 “low” breast cancer. The findings could be the most important development in breast cancer care and treatment in a decade.

Because of recent data, any patient who’s been told they are HER2 negative should go to their doctor and ask if they should be reclassified as HER2 low and if they should therefore consider being treated with Enhertu.

For estrogen-receptor positive breast cancer, the promise of CD4/CD6 inhibitors

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CD4/CD6 are a class of medications that can be used to treat certain types of hormone receptor-positive breast cancer.

Estrogen receptor-positive means a breast cancer needs the hormone estrogen to grow. CD4/CD6 drugs work by stopping progression of the cell cycle, with the goal of slowing the rate at which that cancer cell can grow.

There are several different CD4/CD6 inhibitors on the market, including Ibrance, Kisqali, and Verzenio.

Previously, the drugs were only used for women who had advanced disease but the Food and Drugs Administration (FDA) recently expanded the use.

Chemo FAQ

Chemotherapy, hair loss, wigs: Answers to common chemo questions

If chemotherapy is part of your treatment plan, you may be worried about a number of potential problems — from how you’ll feel mentally to the physical side effects and if you’ll be able to continue working.

We consulted experts to break down common chemo side effects, how long they last, and plans you can make with your doctor to help mitigate them.

How will chemotherapy make me feel?

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There are a lot of myths about how chemotherapy impacts people’s lives. It’s sometimes assumed that while undergoing chemotherapy you’ll be restricted to your home, and unable to move around but this is certainly not the case in many situations, Dr. Marleen Meyers, an oncologist at NYU Perlmutter Cancer Center, told SurvivorNet.

Many people can continue to work through treatment and Dr. Meyers encourages her patients to exercise, even if it’s just a walk. It can make a huge difference when dealing with fatigue, a common side effect of chemotherapy.

There are also treatments to help with other common side effects of chemotherapy. Many medications are available for treating nausea and vomiting as well as anemia.

Can scalp-cooling devices stop hair loss?

For some people, scalp-cooling devices may be able to help prevent hair loss. For others, hair loss may be inevitable — and that can lead to a lot of anxiety.

While many survivors embrace their temporary looks, others really struggle with the idea of people seeing them without hair. For women especially, hair is often very much a part of identity.

There are plenty of options available, including some created by cancer survivors, to help keep you comfortable during this time — including wigs, head wraps, and hats.

Coping with hair loss & the anxiety it brings

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Many people going through cancer treatment feel a sense of dread associated with the thought of losing their hair.

Such a drastic physical change may lead to anxiety and sleepless nights.

Patients can speak to their caregivers to see if any interventions are possible, and should also look into products that are specifically made for people dealing with temporary hair loss — like wigs, head wraps, and more.

Talking about these anxieties can help, but it’s also OK to say so if you are not comfortable discussing it, Psychiatrist Dr. Samantha Boardman stressed.

Diet, Exercise & Stress Management

Living with cancer: Diet, exercise & stress management

While metastatic breast cancer is considered incurable, many patients go on to live long, stable lives after a diagnosis. But you may be wondering if you’ll have to make any drastic changes to your lifestyle.

That will largely depend on your diagnosis and what type of treatment you are undergoing. Different people manage treatment in very different ways.

This section of our Living With Metastatic Breast Cancer series focuses on everyday health basics — like diet, exercise, and stress management — during and after treatment.

Nutrition goals during chemotherapy

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When undergoing chemotherapy, the main diet goal is to maintain weight.

Krista Maruschak, a registered dietician at the Cleveland Clinic, says that eating six smaller meals a day and packing some extra calories and proteins into these meals when possible can make a big difference.

Extra calories doesn’t mean you should have a bag of potato chips with every meal. Things like nuts, dairy products, olive oil, avocados, and hummus are all healthy fats that will do the trick.

What about vitamins & supplements?

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Dr. Marleen Meyers, a medical oncologist at NYU Perlmutter Cancer Center, told SurvivorNet that people living with cancer should focus on a healthy diet rather than trying to get their nutrition through supplements.

“A very important issue to remember…is that they are not FDA-controlled, which means that you don’t really know what you’re getting,” she explained.

When you are going through treatment, it’s important that you continue to live and maintain a healthy lifestyle to the extent that you can.

While you may not feel up to your former workout routine for months or even years, staying active in other ways can make a huge difference.

Stay active — it matters

Getting stress under control is another part of living a generally healthy lifestyle. Many experts in the cancer field have shared with SurvivorNet that patients tend to do better when they are less stressed.

Yet, this is easier said than done when living with cancer. One approach to managing stress that many people living with cancer embrace is meditation.

When dealing with a journey that can be nerve-wracking and very emotional, it can really help to take some time to quiet the mind. To help you get started, we’ve included the below quick & simple guided meditation.

A guided meditation for the SurvivorNet community

Survivor Stories

Inspiring breast cancer survivors share what got them through treatment

When it comes to coping with hardships that come with a cancer diagnosis, patients turn to many different outlets.

Here at SurvivorNet, we’ve spoken to dozens and dozens of breast cancer survivors about the unique approaches they took to get themselves through the tough times.

This section of Living With Metastatic Breast Cancer focuses on a range of different ways to stay positive — from faith and spirituality to finding humor in the struggle.

'Anything that comes, I'm ready': A survivor's story of turning to faith

Painting & dreaming: An artist's approach to coping

The pink tutu: A story of love, marriage & laughing through cancer

More Resources

Living with breast cancer

You’ve made it to the end of Living With Metastatic Breast Cancer. We hope you were able to find some helpful information and some of the support you are looking for as you continue your cancer journey.

Be sure to check out SurvivorNet’s designated section on later-stage breast cancer to learn even more about the basics of your disease, the specific type you have, and what you can expect during the treatment process — and beyond.

We also provide regular updates on any new treatment options as well as inspiring survivors stories.

At SurvivorNet, we’re here to help survivors like you navigate the complex world of treatment and living with cancer.

Thank you for being a part of the family!


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