Metastatic Breast Cancer – Komen Perspectives

Aug 05, 2020 | Komen Perspectives

Any diagnosis of breast cancer is devastating — but none more so than a diagnosis of metastatic breast cancer. Metastatic breast cancer is different than early stage breast cancer. The treatments, anxiety and fear that go along with it may never end.

As hard as it may be to hear, metastatic breast cancer cannot be cured today. It can, however, be treated. Treatment and supportive care for people with metastatic breast cancer focus on extending life and maintaining quality of life.

The seriousness of the diagnosis brings unique challenges for you, your family and other loved ones.

If you’ve been diagnosed with metastatic breast cancer and feel overwhelmed, know you’re not alone.

What is metastatic breast cancer?

Metastatic breast cancer (also called advanced or stage IV breast cancer) is breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body.

Most often, metastatic breast cancer spreads to the bones, lungs, liver or brain. Although it’s in another part of the body, it’s still breast cancer and treated as breast cancer.

For example, breast cancer that has spread to the bones is still breast cancer (not bone cancer). A biopsy of the cancer in the bones will show breast cancer cells, not bone cancer cells. Therefore, it’s treated with breast cancer drugs, rather than bone cancer drugs.

How common is metastatic breast cancer?

It’s estimated more than 168,000 women in the U.S. have metastatic breast cancer [1].

Most often, metastatic breast cancer arises years after a person has completed treatment for early breast cancer. The risk of distant (metastatic) recurrence after early breast cancer treatment varies from person to person.

De novo metastatic breast cancer

Some people have metastatic breast cancer when they are first diagnosed with breast cancer (about 5-6 percent of women and 8-9 percent of men diagnosed in the U.S.) [2]. This is called de novo (which is Latin for “from the beginning”) metastatic breast cancer. Those diagnosed with de novo metastatic breast cancer have unique challenges.  They are thrown into a world of the unknown, as this is their first experience with breast cancer.

What affects prognosis?

There is promise. Many new treatments for metastatic breast cancer are under study. And, current treatments continue to extend the length of life, as well as improve the quality of life.

Survival varies greatly from person to person though. About 30 percent of women diagnosed with metastatic breast cancer in the U.S. live at least 5 years after diagnosis [1]. Some may live 10 or more years beyond diagnosis [3]. 

With today’s treatments, these numbers are likely to keep improving.

Komen Scholar, Dr. Lajos Pusztai, M.D., D. Phil., Professor of Medicine at Yale University, Director of Breast Cancer Translational Research and Co-Director of the Yale Cancer Center Genomics Genetics and Epigenetics Program shared his thoughts on metastatic breast cancer treatment. “Even though a cure remains elusive, the survival of metastatic breast cancer patients has steadily improved in the past 20 years, and entirely novel classes of drugs and new treatment strategies promise further improvements, perhaps even cure for some.”

Metastatic breast cancer treatment overview

Treatment of metastatic breast cancer is highly personalized. Treatment plans are guided by many factors, including:

  • Characteristics of the cancer cells (such as estrogen receptor status and HER2 status)
  • Whether you have a BRCA1 or BRCA2 inherited gene mutation
  • Where the cancer has spread
  • Symptoms
  • Past breast cancer treatments
  • Your goals
  • Your strength and physical condition

Your personal preferences play a large role in your treatment. Some treatments have a lot of side effects. There’s also the possibility that some treatments may not offer much benefit for you.

You have to balance whether the possible benefits of a treatment outweigh the impact it can have on your quality of life.

Together you and your doctor can find the right balance of treatment and quality of life. This balance can shift over time.

Common treatments for metastatic breast cancer

The most common treatments for metastatic breast cancer include:

  • Hormone therapy, sometimes with a CDK4/6 inhibitor or mTOR inhibitor, for estrogen receptor-positive cancers
  • Hormone therapy with a PI3 kinase inhibitor for estrogen receptor-positive cancers that have a PIK3CA tumor gene mutation (this is a gene mutation in the tumor, not in the person)
  • HER2-targeted therapies for HER2-positive cancers
  • PARP inhibitors, for people who have a BRCA1 or BRCA2 gene mutation
  • Checkpoint inhibitor immunotherapy, for PD-L1-positive cancers
  • Chemotherapy for all cancers, regardless of type

For people with metastatic breast cancer that has spread to the bones (bone metastases), additional drugs are used to improve bone strength and help prevent fractures.

Radiation therapy can be used to relieve pain and other symptoms in some areas in the body where the cancer has spread.

Surgery isn’t commonly used for metastatic breast cancer as it doesn’t improve survival [4]. However, sometimes surgery is recommended to ease symptoms or to remove a single metastatic tumor.

Emerging areas of treatment

If you have metastatic breast cancer, you may always be on the lookout for the next breakthrough treatment. New treatments are studied in clinical trials.

Learn about emerging areas in metastatic breast cancer treatment.

Monitoring metastatic breast cancer

Most people get many different therapies over the course of their treatment to control the growth of the cancer, improve cancer-related symptoms and prolong life.

With metastatic breast cancer, a drug therapy may work for months or even years. However, at some point, the tumors will stop responding to that drug (or combination of drugs). So, it’s common to change drug therapies multiple times and to have different types of treatment.

How monitoring guides treatment

If you have metastatic breast cancer, you’ll be monitored every few months to see if the cancer is responding to treatment. Tests may include a physical exam, blood tests and/or imaging tests (such as an X-ray, CT scan, PET scan or bone scan).

  • If the treatment is working (and the side effects aren’t too bad), the treatment is usually continued.
  • If the treatment is no longer working, or the side effects are difficult to manage, your doctor may switch you to a different drug or other type of treatment.

It’s normal to feel anxious before these tests (sometimes called scan anxiety or scanxiety). It may help to bring a friend or family member with you. You can also talk with your doctor or nurse about ways to cope with this stress.

What about joining a clinical trial?

Better treatment is the goal of clinical trials.

Clinical trials can provide an opportunity to try new treatments and possibly benefit from them. They also allow you to contribute to the science that will benefit others with breast cancer for years to come.

As Dr. Pusztai points out, “Clinical trials provide a chance to receive tomorrow’s therapies today.”

In some clinical trials, everyone gets the new treatment to find out how well it works.

In other clinical trials, the goal is to compare a new treatment to the standard of care. Here, not everyone will get the new treatment. You might get the new treatment or you might get the standard treatment (just as you would if you didn’t join the trial). The design of the clinical trial determines which treatment you will get. Your doctor doesn’t get to choose.

Placebos (a “drug” that has no active anti-cancer ingredient) as the only treatment are never used in metastatic breast cancer clinical trials. Sometimes, you may get the standard treatment plus a placebo rather than the standard treatment plus the new treatment. Either way, you will get the standard treatment.

Clinical trials have guidelines on who can enroll. For example, each trial has a list of medical conditions people must have (or not have) to join the study. So, unfortunately you may not be eligible for a trial. Or, there may not be a one that’s right for you in your area.

Talk with your doctor about clinical trials before starting a new treatment or when your doctor recommends changing treatments. Like all aspects of your care, the decision to join a clinical trial is a personal one.

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

BreastCancerTrials.org in collaboration with Susan G. Komen® offers a custom matching service to help people find metastatic breast cancer clinical trials.

Learn more about what Komen is doing to help people find and participate in clinical trials

What is palliative care?

Palliative care aims to prevent or relieve side effects related to cancer and its treatment. These may include pain, nausea and fatigue.

Palliative is a standard part of metastatic breast cancer care. It’s an extra layer of care given along with treatment for the cancer. It works best when it’s integrated early in metastatic cancer care, no matter the prognosis or types of treatment.

Palliative care along with active cancer treatment improves quality of life and might even improve survival [5].

Tori Geib, who is living with metastatic breast cancer adds, “Palliative care is about living your best quality of life today – not just at the end of your life. Many confuse palliative care with hospice. While there are similar goals in treating symptoms and side effects, palliative care should not be feared or only thought of as an end of life option.”

Who provides palliative care?

In many cases, your oncology team can provide palliative care. Before any treatment begins, talk with them about possible side effects. Many side effects can be managed, and some can be prevented. Once treatment begins, tell your doctor or nurse about any pain or side effects you have.

If your oncology team isn’t able to control your side effects, ask your doctor for a referral to a palliative care specialist. This is a doctor with special training in palliative care. Your doctor will often be able to follow the specialist’s recommendations and carry out the plan for your care.

What about social support?

Taking care of your emotional needs at this time is important. Social support can improve mental well-being and quality of life for people with metastatic breast cancer. It can reduce anxiety, stress and depression [5-8].

Social support can be informal, from family, friends and others. Or, it can be more formal support, such as from counseling in a one-on-one or group setting. Everyone has different needs. What’s important is to find a healthy support system that works best for you.

A social worker may be able to help you find a counselor, local support group or an online support group. You can also call our breast care helpline at 1-877 GO KOMEN (1-877-465-6636) for help finding a support group or other resources.

Are there resources to help with financial issues?

Many people with metastatic breast cancer have to deal with financial issues. Treatment for metastatic cancer can continue for years. Health care bills and other expenses can add up.

Your doctor, nurse, patient navigator or social worker may know about local financial assistance resources. And, most hospitals or medical centers have financial counselors or patient navigators with experience in the financial issues of cancer care.

You can also call our breast care helpline at 1-877 GO KOMEN (1-877-465-6636) for information on financial assistance and other support services.

What happens when I stop cancer treatment?

The decision to stop treatment for the cancer is a personal one. You may decide to stop active cancer treatment when it stops showing any benefit or when it greatly affects your quality of life.

Once treatment for the breast cancer has stopped, palliative care becomes the main focus of treatment. It can improve quality of life for patients and caregivers[5].

What about end-of-life or hospice care?

Palliative care is key to meeting the needs of patients and their families toward the end of life.

Hospice is a specific part of end-of-life care that works to preserve quality of life.  It allows a person to die with as much comfort and dignity as possible.

Palliative care specialists and hospice care providers can help with advance care planning. They can help people identify the goals and values which will guide their care. Understanding a person’s worries and fears about their health, including the things they feel are vital to quality of life, also helps guide care.

Hospice care often begins when a patient has less than 6 months to live and active cancer treatment has stopped.

Hospice is usually given at home. It can also be given as in-patient care at a freestanding hospice house or at a hospital with hospice services.

Summary

A diagnosis of metastatic breast cancer brings unique challenges related to treatment, prognosis and many aspects of life.

While metastatic breast cancer cannot be cured today, treatment and supportive care aim to lengthen life and help maintain quality of life. A clinical trial may offer the chance to benefit from a new treatment.

Palliative care provides relief from pain and other side effects related to treatment and the cancer itself. It should begin as soon as possible after diagnosis.

Tending to your emotional well-being is important. Social support from friends, family, a support group or counselor can be very helpful.

Whether you need information, support or financial assistance, there are resources that may help. Learn more about Komen’s resources below.

What is Komen doing to address the needs of people living with metastatic breast cancer?

While improvements in early detection and screening have greatly reduced breast cancer mortality over the past 30 years, many women and men still lose their lives to breast cancer each year. We attribute most of these deaths to metastatic breast cancer.

Komen is one of the largest nonprofit funders of metastatic breast cancer research. We have invested more than $210 million in over 500 research grants and more than 50 clinical trials focused on metastatic breast cancer. Nearly one-third of Komen’s active research grants address metastatic breast cancer. We are dedicated to understanding and meeting the needs of this community.

Our research program is focused on understanding why metastasis occurs and how to prevent or treat it. We are interested in:

  • Identifying the genes and processes that cause breast cancer cells to metastasize
  • Developing and testing new therapies for prevention and treatment metastatic breast cancer
  • Discovering new methods for predicting risk of metastasis or detecting metastasis early using urine tests, blood tests or body scans

We want everyone with metastatic breast cancer to benefit from the scientific discoveries that are improving treatment. We also want people to have the information and support they need to face the unique challenges of this disease.

Our work doesn’t stop with research. We try to help those with metastatic breast cancer live better lives, longer. We provide resources and support for people with metastatic breast cancer and their families. 

Komen Affiliates across the U.S. are working with local community-based organizations to change behaviors and increase access to high-quality breast care. Komen works with partners in local communities to unlock the scientific discoveries and deliver the support needed to help people living with metastatic breast cancer. In addition, Komen offers conferences and events across the country to educate, empower and connect those with metastatic breast cancer with information, resources and others in the community.

Through our extensive advocacy network, Komen is committed to doing everything we can to reduce breast cancer mortality. By mobilizing the voice of everyone impacted by this disease, we can achieve lasting change through sound public policy.

Komen collaborates with other organizations in a variety of ways. We work with scientific and patient-focused groups through conferences, partnerships and programs to facilitate the exchange of knowledge and information. This stimulates the research progress that will one day lead to the end of breast cancer as a life-threatening disease.

Visit the MBC Progress page to see the impact we are making against metastatic breast cancer.

Komen resources    

Treatment and Clinical Trials

Newly Diagnosed with Metastatic Breast Cancer
Treatments for Metastatic Breast Cancer  

Emerging Areas in Metastatic Breast Cancer Treatment

Clinical Trials for People with Metastatic Breast Cancer

Support and Palliative Care

Support for People with Metastatic Breast Cancer

Managing Side Effects and Supportive Care – Metastatic Breast Cancer

Bone Metastases

Quality of Life – Metastatic Breast Cancer

Hospice Care

Financial Assistance and Insurance

Financial Assistance

Prescription Drug Assistance

Insurance

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 Facebook Group – Komen Breast Cancer group. The Facebook group provides a place where those with a connection to breast cancer can discuss each other’s experiences and build strong relationships to provide support to each other. Visit Facebook and search for “Komen Breast Cancer group” to request to join the closed group.

– Komen Affiliates offer breast health education and some fund breast cancer programs through local community organizations. Your local Affiliate may also help you find breast cancer resources in your area. Find your local Affiliate and a list of Affiliate events focused on metastatic breast cancer.

– Our Family and Friends section has detailed information and resources for loved ones.

– Our fact sheets, booklets and other education materials offer additional information.

References

  1. Mariotto AB, Etzioni R, Hurlbert M, PenberthyL, Mayer M. Estimation of the number of women living with metastatic breast cancer in the United States. Cancer Epidemiol Biomarkers Prev. 26(6):809-815, 2017.
    
  2. Howlader N, Noone AM, Krapcho M, et al. (editors). SEER*Explorer. Breast cancer- Stage distribution of SEER incidence cases, 2008-2017 by sex. National Cancer Institute. Bethesda, MD. Accessed on April 24, 2020. https://seer.cancer.gov/explorer/, 2020.
    
  3. Lippman ME. Chapter 74: Management summary for the care of patients with metastatic breast cancer, in Harris JR, Lippman ME, Morrow M, Osborne CK. Diseases of the Breast, 5th edition. Lippincott Williams and Wilkins, 2014.
    
  4. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: Invasive breast cancer. V.3.2019. http://www.nccn.org, 2020.
    
  5. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 30(8):880-7, 2012.
    
  6. Goodwin PJ, Leszcz M, Ennis M, et al., The effect of group psychosocial support on survival in metastatic breast cancer. N Engl J Med. 345(24):1719-26, 2001
    
  7. Hewitt ME, Holland JC. National Cancer Policy Board (U.S.), Meeting psychosocial needs of women with breast cancer. Washington, D.C.: National Academies Press, 2004.
    
  8. Bjorneklett HG, Lindemalm C, Rosenblad A, et al. A randomised controlled trial of support group intervention after breast cancer treatment: results on anxiety and depression. Acta Oncol. 51(2):198-207, 2012.