What is metastatic breast cancer?
Metastatic breast cancer, also known as advanced, secondary or stage IV breast cancer, is a breast cancer where cancerous cells have spread to other parts of the body. Though cancerous cells in the breast can move to almost any other part of the body, they generally travel to the bones. They can also be found in the lungs, liver, brain and skin. This new cancer is known as metastatic.
If you were initially diagnosed as having metastatic breast cancer, this means that cancerous cells were detected both in your breast and in other parts of your body. In this case, even if cancerous cells moved to other parts of your body, the origins of the cancer are taken into account and you will be treated for breast cancer, regardless of where in your body cancerous cells are present.
For ease of reading, we will refer to women throughout this document. However, let’s not forget that breast cancer in men represents 1% of diagnosed cancers and that the risk of metastasis is much higher among men than women. This is caused by misconceptions about the illness among men combined with a lack of obvious symptoms and the difficulties involved in setting up an efficient screening process.
A breast cancer diagnosis
Being told that you have metastatic breast cancer is a trying ordeal. The day, weeks and months following your diagnosis may be very difficult. You will most likely feel a range of intense emotions: fear, anger, confusion, sadness and mourning. These feelings may be stronger and more intense than the emotions you experienced after a previous diagnosis.
You may feel isolated and alone at a time when you most need company and support. Make sure you have the support of others and don’t be afraid to ask for help. Family members, friends, work colleagues or acquaintances can help, listen and support you. The Foundation also offers a range of support programs free of charge. Don’t hesitate to call our toll-free number (1877-990-7171, extension 250).
You might also find it useful to share what you’re going through with other women who have also been diagnosed with metastatic breast cancer. You can avail of personalized support by participating in a self-help group or an online, phone or in person support group.
It is important to talk about your diagnosis when you feel ready to do so. First off, take time to feel the emotions you are going through and then, if you feel that you need to, wait until you have consulted your medical care team and carried out your own research. You may choose to share your news with one or two people or to tell everyone that you know. The way in which you share news of your situation is entirely up to you.
Metastatic breast cancer will also affect your relationship with your partner. It may put strain on a couple’s long-term relationship or bring them closer. Do not underestimate the impact that such a diagnosis can have on your partner and/or children and other members of the family. They also need to talk about it.
Difficulties in your relationships are generally caused by feelings of fear, anger and other emotions associated with the diagnosis, a feeling that the daily routine is being turned upside-down, increased isolation due to a reduced social life, new financial pressures and a change of roles within the relationship.
A parent may have difficulty speaking to their children about the illness because protecting your children from bad news is a natural instinct. However, children can feel when something is wrong and they imagine the worst when they are kept in the dark. Try to put your fears aside and find a way to tell your children (and grandchildren) about your diagnosis in order to alleviate their feelings of fear, confusion and distress. You are best suited to judge how much your children will understand. Their reaction will depend on their age and developmental stage. A range of resources are available to help you find the best possible wording. You can find helpful information on our website - https://rubanrose.org/services-resources/useful-information/breaking-news-diagnosis-children.
Young women are faced with particular challenges and some of their needs are different because they are more likely to have a relatively new relationship, young children and a career on the rise.
If you are young and have been diagnosed with metastatic breast cancer, you are not alone. Contact other young women in the same situation in order to find the support you need. Build a community of other young women who are dealing with the same experience as you. This will help you overcome the feeling of isolation that comes from a metastatic breast cancer diagnosis at a young age. Visit https://www.cbcn.ca/en/young_women.
Your treatment options
1. Types of treatments
Systemic therapies are treatments that affect cancer cells throughout the body by traveling through the bloodstream. Systemic therapy may be used to slow the progress of the disease. Chemotherapy, hormone therapy and targeted therapy are all systemic treatments.
Chemotherapy involves drugs that kill or prevent the growth of cancer cells and can be used in combination with other treatments, or on its own. Depending on the drug, it can be given either intravenously into a vein with a needle or in pill form. Chemotherapy is typically given in cycles. You may have a rest period of one to three weeks between cycles, which allows you to recover from some of the side effects you may experience.
Some of the side effects of chemotherapy include nausea, vomiting, hair loss, mouth sores and fatigue. It is unlikely you will experience all of these side effects, and it is important to inform your medical team of any side effects you experience, since there may be medications available to prevent or manage them.
Hormone therapy may be used when breast cancer cells have been identified as hormone-receptor-positive, meaning the cancer cells have receptors for the hormones estrogen and/or progesterone. When these hormones, particularly estrogen, attach to hormone receptors, the cancer cells are stimulated to grow. There are a number of hormone therapy drugs that either reduce the production of hormones in the body or block hormones from attaching to cancer cells. These drugs are usually pills and have relatively few side effects. Tamoxifen and aromatase inhibitors are types of hormone therapy drugs.
Targeted therapy is intended to “target” cancer cells, which causes less harm to healthy cells than chemotherapy and potentially fewer side effects. Targeted therapy uses drugs that are designed to interfere with specific molecules located in or on a cancer cell that help cancer cells to grow and divide. Targeted therapy may be used alone or in combination with other drugs.
Radiation and surgery are the most common forms of local therapy – therapy aimed at a particular area of the body. For metastatic breast cancer, local therapies are commonly, although not exclusively, used to manage symptoms such as pain.
Radiation uses high-energy rays or particles to fight cancer by destroying cells or slowing their growth. Radiation can have negative side effects, partly because the same rays that destroy cancer cells may also destroy healthy cells. When used in a site-specific way to manage metastatic cancer, the side effects (including sunburn-like effects) are mostly limited to the radiated site. For example, diarrhea and abdominal cramps may occur if the pelvis is radiated to treat bone metastases. Similarly, hair loss may be a consequence of radiation of the skull. Radiation may also make you feel tired.
Surgery can be used to alleviate specific symptoms (e.g., to relieve pressure on a nerve or the pressure created by the expansion of an organ, such as the liver or brain). For bone metastases, surgery may be used to implant metal rods to strengthen weakened bones. If metastatic breast cancer is your initial diagnosis, it is not likely that surgery to remove a breast tumour will be recommended. Many doctors believe that surgery does not improve survival, although some do. This is a discussion that you should have with your health care team.
2. Your treatment plan
Good communication with your healthcare team is essential to coming up with a treatment plan. You must understand everything about the diagnosis, your prognosis and the options available for you. As you make decisions, you must take into consideration your lifestyle, your job and other quality of life stakes. Your healthcare team can help you make the best choices. Stress and anxiety can reduce your ability to take all this new information on board. This is why we recommend that a loved one supports you throughout the process.
If you were previously diagnosed with breast cancer, you probably underwent treatment as per a standard therapy protocol. Treatment of metastatic breast cancer is usually personalized and adapted to your particular situation. Each cancer is different and the reaction to treatment and side effects can vary from one person to the next.
Several factors will influence the type of treatment you will receive: the characteristic of your primary cancer and its metastases, the extent and growth rate of the metastases, the location(s) the cancer has spread to, your reaction to previous treatments and their effectiveness. Naturally, your age and state of health will also be taken into consideration along with other stakes and personal choices that include the number of hospital visits, the time required for each visit, the side effects that must be minimized, other chronic illnesses, etc.
Treatment generally begins with monotherapy (administering one drug). Next, your doctor will have you take tests a few months after beginning your treatment in order to find out if your cancer has progressed (tumours have grown larger or the cancer has spread), if it has regressed (tumours have decreased in size or the cancer appears to have disappeared) or if it remains stable (no changes reported).
If the cancer has progressed, another treatment may be proposed or, in certain cases, a combination of treatments. Your doctor will advise you on your treatment options that correspond to your follow-up test results.
Your treatment choices all come with advantages, risks and side effects that may affect you in no small way. Choosing a treatment is difficult and you may review the process more than once over the course of your illness.
Your support network
After being diagnosed with metastatic breast cancer, it is vital that you are supported by a healthcare team who can help you get through this stage as smoothly as possible. This team will help and support you for several years. You must feel that you can trust them and take in the information that will allow you to make informed decisions about your care and treatments.
Your healthcare team is multidisciplinary and made up of oncologists, family doctors and other specialists: nurses, physiotherapists, psychotherapists, psychologists, social workers, etc. Your pharmacist is also a valuable source of information about the medication that you are taking or planning to take.
Palliative care team
Palliative care is more than end-of-life care. Palliative care also provides support for a person in the advanced stage of an illness. Your palliative care team is most likely made up of specialized doctors and nurses and several other practitioners suited to your needs (psychiatrist or psychologist, nutritionist, physiotherapist, kinesiologist, massage therapist, etc.) Their role involves relieving pain and reducing physical symptoms, depression, stress and anxiety that are associated with the advanced stage of an illness, with a view to improving your quality of life. They can also help you navigate the healthcare system and provide counselling that will help you make difficult and complex decisions about treatment.
Symptoms and side effects
Taking potential side effects into account is part of your decision-making process when it comes to treatment. Side effects vary depending according to the type of medication, your tolerance level, your medical history and your current state of health.
Your healthcare team is responsible for evaluating, as far as possible, the risk of developing side effects and recommending an adapted treatment plan.
The most common side effects are:
- If you receive chemotherapy treatment, your hair will thin and may fall out. You may also suffer from nausea, vomiting, diarrhea, constipation and mouth ulcers. Do not ignore any side effect. Make sure that you contact your medical team quickly so they can propose treatments that will reduce the side effects.
- Fatigue is often a physical consequence of cancer or a reaction to treatment.
- Medication, radiotherapy and various types of complementary therapy can be used to manage pain. If pain is not effectively treated, it can cause fatigue and other symptoms.
- Your body needs white blood cells to fight infection. A low number of white blood cells is called neutropenia. During your treatment, your medical team will monitor your symptoms and track the number of white blood cells in your blood in order to ensure that it does not drop to an undesirable level.
- “Brain fog” is characterized by a lack of concentration and cognitive changes which include memory loss and the inability to think clearly. These symptoms usually become less severe over time.
- Anxiety, depression and insomnia are frequent. Several medications and type of psychological support can help. Relaxation techniques can also be helpful (yoga, tai chi, meditation, etc.).
- Certain drugs used in chemotherapy can damage nerves and this condition is known as peripheral neuropathy. The primary symptoms are a tingling sensation and numbness of the hands and feet. This condition can evolve to include pain or chronic discomfort. If you experience these symptoms, talk to your doctor immediately.
Complementary therapies cannot replace standard recognized treatments for metastatic breast cancer, but they can reduce certain symptoms and make up an interesting addition for dealing with symptoms.
- Exercise helps maintain muscle tone and relaxes your muscles. It can also reduce fatigue and help you get a better night’s sleep.
- Good nutrition is essential to keeping you as healthy as possible and avoiding nutritional deficiencies associated with certain treatments or undesirable interactions.
- Acupuncture and massage can reduce pain and muscular tension.
- Meditation, yoga, tai chi, therapeutic touch, reiki and visualization are used to calm and reduce stress and anxiety.
Consult your medical team before beginning any complementary therapy session as certain therapies may disrupt your treatment.
Accreditations required for practising complementary therapies vary according to the discipline and the geographical region. Make sure that the practitioners you consult have the required expertise for treating a person with advanced breast cancer.
Taking part in clinical trials
Clinical trials are studies aimed at testing the efficiency of new drugs and innovative treatments before they can be approved by Health Canada. Clinical trials offer the chance to try out new drugs that could extend your life or improve your quality of life. When you take part in clinical trials, you also help others by contributing to medical research on metastatic breast cancer.
If you would like to find out more about clinical trials, talk to your doctor and ask him/her if you can participate. Eligibility criteria vary from trial to trial. Your doctor can help you understand the process, advantages and disadvantages of a particular clinical trial. Though it is highly likely that you will benefit from the thorough follow-up offered to participants, participation in a clinical trial also entails more medical visits and follow-up tests with no guarantee of benefits. The decision to participate in a clinical trial is yours alone and you are free to drop out of a clinical trial at any time, regardless of the reason.
Participation in a clinical trial is on a voluntary basis and the associated treatment is free of charge. However, you cannot choose the type of treatment. You may receive experimental treatment or the corresponding standard treatment or even a placebo. Though a placebo is an inactive substance, you will also receive the standard treatment for this type of cancer.
Managing your quality of life
The challenge that you and your healthcare team are faced with is finding the balance between a good quality of life and the treatment which is to prolong your life and provide relief from symptoms. A good quality of life means that your needs are met physically, emotionally and socially.
It is important to maintain physical activity so that you can be as energetic as possible. Walking, yoga or other forms of exercise are all activities that can help you feel better physically and raise your morale. You can ask your healthcare team to help you plan a regular exercise program that matches your capability. Don’t forget to listen to your body and to respect your limits. Palliative care and pain management are also important elements linked to your physical and emotional well-being. Massage, pain medication and other forms of complementary therapy can help you benefit from physical activity.
Living with metastatic breast cancer is challenging on an emotional level. Developing skills and strategies to manage the range of emotions that you cannot anticipate is both normal and helpful. Professionals and self-help groups for survivors can help you. If you’d like to find out more, call us at 1877-990-7171, extension 250.
Maintaining a social life outside of the cancer “environment” can improve your quality of life. Though it is difficult while undergoing treatments, set aside time for the people you hold dear. Take time to do the things you love. Concentrate on the uplifting support you receive from the people who can help you.
The final stages of life
Many women living with metastatic breast cancer decide to take charge and manage the final stages of their lives. They draw up a will, a mandate in case of incapacity, document their wishes and instructions when it comes to palliative care, and some also plan their funerals.
If you’d like to learn more about these subjects, consult your notary and financial advisor.
- Hope & Cope, located in the Jewish General Hospital in Montreal, is a non-profit organization made up of 400 volunteers and a team of professionals who offer psychosocial support services to cancer patients and their loved ones after a diagnosis has been made and throughout the stages of the illness.
- Virage (website in French only) is a welcoming organization whose staff understand the distress and emotions that result from a cancer diagnosis because many of them have experienced it for themselves. Virage self-help sessions help people affected by breast cancer and their loved ones when a diagnosis has been made as well as during and after treatments.
- The Quebec Cancer Foundation offers information, support and accommodation to people affected by breast cancer and their loved ones. The Foundation strives to help people live with the illness.
- The Canadian Breast Cancer Network is a Canada-wide network made up of 225 organizations and several hundred people. Breast cancer survivors are the driving force of the network.
- The Advanced Breast Cancer Community is a web portal and online community solely dedicated to advanced/metastatic breast cancer patients, their families, friends and health care providers.
- Metastatic Breast Cancer Network (MBCN) is an American patient-led advocacy organization dedicated to the unique concerns of the women and men living with metastatic breast cancer.
- AdvancedBC.org is dedicated to the needs of people living with metastatic breast cancer.The website links to online resources, information about research and treatments, and the perspectives of Musa Mayer, long-time advocate and author.
- The mission of the MetaCancer Foundation is to improve the psychosocial condition of people living with metastatic cancers. Its website includes information and tips, as well as an online community.
- Metastatic Breast Cancer Information and Support offers a message board for people with metastatic breast cancer.
- METAvivor is a non-profit organization dedicated to increasing awareness of advanced breast cancer and equity in research and patient support.
- BrainMetsBC.org offers women with metastatic breast cancer and their families a place to learn about brain metastases from a patient perspective.
- Living Beyond Breast Cancer offers a section on its website for the latest news on advanced disease, treatments and updates on clinical trials. Guides to understanding metastatic breast cancer are also featured.