What is metastatic breast cancer?
Metastatic breast cancer, also known as Stage 4 breast cancer, is the most advanced form of breast cancer. Metastatic breast cancer is when cancer cells from the breast have migrated to other parts of the body to form new tumours at a distance from the primary tumour. These new tumours are called secondary tumours or metastases and are responsible for most breast cancer-related deaths.
There are treatments that can limit the progression of the disease and mitigate its secondary effects. However, despite advancements that have made it possible to stabilize metastatic breast cancer, it is considered incurable. Currently, people who receive this diagnosis generally cannot expect to be cured, but some live for many years. People with this type of breast cancer are facing a much different reality than those with earlier-stage breast cancers.
In the United States and other developed countries, it is estimated that between 3 and 10% of new breast cancer cases are first diagnosed at Stage 4 and that approximately 20 to 30% of cancer cases will ultimately develop metastases. The Quebec Metastatic Breast Cancer Registry was established in 2021 (1).
This article focuses on breast cancer in women because the vast majority of breast cancer cases affect women. However, it should be noted that breast cancer in men represents 1% of breast cancer cases. Furthermore, men are at a greater risk of receiving a late diagnosis due to a lack of knowledge of the disease in men, the absence of obvious signs and the challenges of establishing effective screening.
Where are breast cancer metastases found?
Although cancer cells from the breast can migrate to almost any part of the body, they are most commonly found in the bones, lungs, liver and brain. Organs affected by metastases are known as sites of metastasis or sites of spread.
If you are diagnosed with metastatic breast cancer or recurrence, it means that cancer cells have been detected in parts of your body other than the breast. In this case, although the cancer cells have moved to other parts of your body, the origin of the cancer will still be used to characterize the disease, regardless of where the cancer cells are located. Because the primary tumour originated in the breast, you will receive treatment for metastatic breast cancer or for a metastatic recurrence (not for bone, lung, liver or brain cancer).
Receiving a metastatic breast cancer diagnosis
Receiving a metastatic breast cancer diagnosis is harrowing. The days, weeks and months following your diagnosis can be very difficult. You will probably experience intense emotions: fear, anger, confusion, grief and mourning. These feelings can be even deeper and more intense than those you experienced with your previous diagnosis.
You may feel isolated and alone. During this time, you need company and support. Make sure you have people around you and don’t be afraid to ask for help. Family members, friends, colleagues and acquaintances can help you, listen to you and support you.
Remember that you are not alone. The Quebec Breast Cancer Foundation is here to help. See our free support services and don’t hesitate to contact us for support and information at 1 855 561-PINK (7465) or by e-mail at stade4@rubanrose.org.
Sharing your diagnosis
You should talk about your diagnosis only when you feel ready. Take care of your emotions first. You may want to wait until you have met with your healthcare team and done your own research. Whether you decide to share the news with just a few people or to tell everyone in your life, the decision to talk about your situation is yours.
Telling your children about your diagnosis
Parents may struggle to talk about their disease with their children, because they want to shield them from bad news. However, children can sense when something is not right and will imagine the worst if the truth is hidden from them. Despite your worries, it is possible to share your diagnosis with your children (and your grandchildren) in a way that soothes their feelings of fear, confusion and distress. You are the best person to judge what your children can understand. Their reaction will depend on their age and their development. A number of resources are available to help you find the right words. See our blog post I just received my diagnosis. How do I tell the kids?
Treatment for metastatic breast cancer
Your healthcare team
When you have been diagnosed with metastatic breast cancer, a healthcare team will support you as best as possible throughout your journey. Good communication with the people on the team is essential for talking freely, asking questions and receiving the information you need to properly understand the diagnosis, prognosis and options available to you.
Your healthcare team is multidisciplinary—oncologists, family doctor and other specialists such as nurses, physiotherapists, psychologists, social workers and more. Your pharmacist is also an important source of information concerning the medications you are taking or considering.
It is important to know everyone on your team, their respective roles and to know when and how to reach them. They can also help you navigate the healthcare system and provide advice to help you make informed decisions.
Your palliative care team
Palliative care is not just end-of-life care. The palliative care team supports people affected by the disease in an advanced stage. For example, they will be there to relieve the symptoms of cancer and the side effects of treatment, such as pain, depression, stress and anxiety, with the goal of improving your quality of life. Your palliative care team can also help you navigate the healthcare system, provide information or help you make informed decisions when it is time to make difficult choices.
Your palliative care team is likely to be multidisciplinary and may include specialized doctors and nurses, as well as many other stakeholders depending on your needs (nutritionist, massage therapist, etc.).
Preparing for appointments
Stress and anxiety can make it harder for you to absorb all the new information provided at medical appointments. It is a good idea to have someone come with you. You can also compile a list of questions and ask the person who comes with you to take notes.
Planning treatments
Every case of metastatic breast cancer is different. The treatment plan for metastatic breast cancer will be personalized and adapted to your unique situation. Several factors will influence the choice of your treatment plan. These include the characteristics of the primary tumour and the metastases, the sites of spread, the number and size of the metastases, how quickly they are progressing, the hormone receptor status, the HER2 status and your reaction to previous treatments. Your age and overall health will also be taken into consideration as well as other issues and personal choices such as the number of hospital visits and the time required for each visit.
Your treatment options offer benefits and possible side effects. Discuss the different options with your healthcare team to weigh the risks and benefits together and make informed decisions.
Depending on your specific needs, your healthcare team may suggest hormone therapy, chemotherapy (administered alone or in combination), targeted therapies, or a combination of these options.
In the months after treatment begins, your doctor will have you undergo tests to determine if the cancer is progressing (tumours are growing or the cancer is spreading), regressing (tumours are shrinking or the cancer seems to have disappeared) or holding stable (no change). Your doctor will advise you on your treatment options based on the monitoring results.
Participating in clinical trials
Clinical trials are studies designed to test the effectiveness of new medications or innovative treatments. Clinical trials are an opportunity to have access to new therapies likely to extend your life or improve your quality of life.
When you participate in a clinical trial, you are contributing to the advancement of medical research on metastatic breast cancer.
You can consider taking part in a clinical trial as soon as you are diagnosed. The first step is discussing it with your doctor. They can assess your eligibility and help you to understand the processes, advantages and disadvantages of a particular clinical trial, so you can make an informed decision.
Living with metastatic breast cancer
The challenge for you and your healthcare team is to find the right balance between life-extending and comfort treatments and your quality of life. Good quality of life means that your physical, psychological, emotional and relationship needs are met to the extent possible.
Side effects of metastatic breast cancer and treatments
Every cancer is different and reactions to treatment and side effects vary from one person to another, particularly depending on the type of medication, dosage, your tolerance level, your medical history and your current health.
The professionals on your healthcare team are there to inform you of the possible side effects and ways to prevent or better manage them.
Here are some of the most common side effects of metastatic breast cancer treatment:
- Fatigue
- Thinning hair or hair loss if you are receiving chemotherapy
- Early menopause and fertility issues
- Nausea, vomiting, mouth ulcers, diarrhea or constipation
- Metabolism and appetite disruptions, causing changes in your body composition
- Decreased white blood cells, which your body needs to fight infection. A low white blood cell count is known as neutropenia
- Cognitive changes, including memory loss and “brain fog”
- Nerve damage, in a condition known as peripheral neuropathy
No side effect should be ignored. Tell your healthcare team about any side effects right away so the professionals can help you relieve them.
Emotional impacts
Living with metastatic breast cancer brings its share of emotional challenges. It is natural to feel a wide range of emotions. Anxiety and depression are common following a metastatic breast cancer diagnosis. It’s normal to need time and support to develop strategies to accommodate and cope with the different emotions that may surface without warning.
Young women face particular challenges and needs, especially because they are likely to be in a relatively recent relationship, have young children and a rising career. If you are young and have been diagnosed with metastatic breast cancer, you can talk to other young people with Stage 4 breast cancer. Talking with other women who are going through a similar experience can help break the isolation and provide comfort.
Remember that you are not alone. The Quebec Breast Cancer Foundation is here to help. See our free support services and don’t hesitate to contact us for support and information at 1 855 561-PINK (7465) or by e-mail at stade4@rubanrose.org.
Relationship impacts
A metastatic breast cancer diagnosis can impact your relationships with your loved ones and the people around you. It can test well-established relationships, or strengthen them.
Maintaining a social life outside the “cancer world” can improve your quality of life. Although you may find it challenging during treatment periods, make time to see the people who are important to you. Do the things that matter most to you. Concentrate on the support you receive from the people who are able to help you.
Metastatic breast cancer can have a particularly significant impact on your partner, your children and your other family members. They might need to talk about it too. They may be struggling with feelings of fear, anger and other emotions associated with the diagnosis, the disruption of daily routines, increased isolation due to withdrawal from social life, new financial pressures and changing roles in the couple or family.
The Quebec Breast Cancer Foundation offers a psychosocial support service available free of charge to support you and your loved ones through the many emotional challenges presented by metastatic breast cancer.
Living better with metastatic breast cancer
Healthy lifestyle
Physical exercise can be beneficial to your health and well-being. Moving every day, one step at a time, can help you manage the side effects of cancer and treatments such as fatigue, pain, depression, anxiety and stress. Metastatic disease may limit the type of exercises you can do or how often you can do them.
To help you establish or maintain an active routine at your own pace adapted to your condition, you can benefit from our My Active Health services. These include free oncological yoga sessions for life from the comfort of your home or in studio.
You can also ask your healthcare team to help you develop a regular exercise program that fits your abilities. It is important to listen to your body and respect your limits.
Eating well after a metastatic breast cancer diagnosis is not always easy. The side effects of cancer and treatments can affect the appetite, enjoyment of eating and keep you from eating healthfully. Despite these challenges, it is possible to eat well while adapting to the changes caused by the disease and also to better counter them. By adapting your diet, you can maintain sufficient nutritional intake, fight fatigue, mitigate some side effects, prevent some complications and reclaim the simple pleasure of eating.
See our My Active Health Nutrition program for advice and recipes for a healthy diet adapted to your situation and your needs.
Complementary therapies
Complementary therapies are not a replacement for standard treatments approved for metastatic breast cancer. However, they can help relieve certain symptoms or side effects and can be a helpful addition to your care.
Acupuncture and massage can reduce pain, nausea and tension. Meditation, yoga, tai chi, therapeutic touch, reiki, or even visualization are complementary therapies that could be useful in relieving stress and anxiety.
It is important to discuss complementary therapies with your healthcare team before starting. Furthermore, make sure that you only consult people with the accreditations required by the healthcare bodies or professional orders in your region for treating people with advanced cancer.
End-of-life arrangements
De nombreuses femmes vivant avec un cancer du sein métastatique choisissent de prendre en main la gestion des étapes de leur fin de vie : elles font rédiger un testament, prévoient un mandat d’inaptitude, précisent leurs volontés en matière de soins de fin de vie, et peuvent aussi planifier leurs funérailles.
Pour vous renseigner sur ces sujets, vous pouvez notamment consulter un notaire et un conseiller financier.
Our services for metastatic breast cancer
In response to the specific needs of people with metastatic breast cancer, the Quebec Breast Cancer Foundation has developed a program dedicated exclusively to providing the best possible support to the people affected.
The metastatic breast cancer program includes different free support services and resources:
- Free psychosocial support sessions
- Financial assistance for metastatic breast cancer
- Lifetime access to free medical teleconsultations via the Clinique virtuelle
- Access to the virtual Chit-Chat Club peer meetings
- Access to the private Club Stade 4 focus group exclusively for Quebecers with metastatic breast cancer
- Lifetime access to free oncological yoga sessions, as well as other adapted services and tools to move and eat well following a diagnosis
You can also see the following blog posts and testimonials:
Other information and support resources
- Canadian Breast Cancer Network (CBCN) offers information and resources for people living with metastatic breast cancer.
- MBC Time offers information, testimonials and lists of resources for people affected by metastatic breast cancer. MBC Time is an initiative of the Quebec Breast Cancer Foundation, the Canadian Breast Cancer Network, Rethink Breast Cancer (Rethink) and one of the leading research-focused pharmaceutical companies in Canada. The symbol for metastatic breast cancer was developed during the Stage 4 campaign (2).
- Met-et-or is a French-language private Facebook group exclusively for women in Quebec with metastatic breast cancer.
- Les petites roses is a French-language private Facebook group exclusively for women in Quebec who are under 40 and have breast cancer.
- Metastatic Breast Cancer Network (MBCN) is a U.S. organization managed by patients that advocates for women and men living with metastatic breast cancer.
- METAvivor is a not-for-profit organization that raises public awareness of advanced breast cancer and equity in the fields of research and patient support.
- MBCBrainMets.org offers women living with metastatic breast cancer and their families a place to talk about brain metastases from the perspectives of people affected.
- Living Beyond Breast Cancer offers the latest information on advanced cancer, new treatments and the latest clinical trials as well as documents explaining metastatic breast cancer.
Find other support resources in our Resources Directory.
Whatever your questions, you can reach our Peer support hotline at 1 855 561-PINK (7465) or e-mail us at stade4@rubanrose.org.
(1) TheQuebec Metastatic Breast Cancer Registry, supported financially since its launch by the Quebec Breast Cancer Foundation, is an initiative in partnership with the group McPeak-Sirois, 4 pharmaceutiques, supported by the Ministry of Health and Social Services (MSSS) and the Direction nationale du Programme québécois de cancérologie (PQC). Created in 2021, this registry is a database that collects and shares information on metastatic breast cancer in Quebec. This valuable tool for researchers makes it possible to better understand the disease and to advance research and care.
(2) The symbol for Stage 4 breast cancer, developed during the MBC Time campaign, signifies both the hidden face of metastatic breast cancer and compassion. The goal of this campaign is to raise public awareness of metastatic disease and the many needs and specific challenges faced by people affected. To order a pin with this symbol, write to us at stade4@rubanrose.org.
References
- Daily K, Douglas E, Romitti PA, Thomas A. Epidemiology of De Novo Metastatic Breast Cancer. Clin Breast Cancer. 2021 Aug;21(4):302-308. doi: 10.1016/j.clbc.2021.01.017. Epub 2021 Jan 31. PMID: 33750642.
- National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program
- 10.1200/CCI.21.00020 JCO Clinical Cancer Informatics no. 5 (2021) 789-804. Published online August 5, 2021.
- Torrisi R, Jacobs F, Miggiano C, De Sanctis R, Santoro A. HR+/HER2– de novo metastatic breast cancer: a true peculiar entity? Drugs Context. 2023 Mar 6;12:2022-12-2. doi: 10.7573/dic.2022-12-2. PMID: 36926051; PMCID: PMC10012832.
- Breast Cancer: Statistics, Approved by the Cancer.Net Editorial Board, 02-2023