Metastatic Breast Cancer
What is metastatic breast cancer?
In metastatic breast cancer (also known as advanced, secondary, generalized or stage IV), the cancer cells have spread to other parts of the body. Although breast cancer cells can spread to almost anywhere in the body, they usually settle in the bones. They are also often found in the lungs, liver, brain and skin. This is called metastatic breast cancer.
If your initial diagnosis is metastatic breast cancer, it means that cancer cells have been found both in your breast and elsewhere your body. In this case, even if the cancer cells are in other parts of your body, the origin of the cancer will be considered and you’ll receive treatment for breast cancer, no matter where the cancer cells are found.
To simplify reading, this text is written in the feminine. It should be noted, however, that male breast cancer accounts for 1% of diagnosed cancers and that the risk of metastasis is higher in men than in women, due to a lack of knowledge of the disease in men, combined with the absence of obvious symptoms and the difficulty of setting up effective screening.
Being diagnosed with metastatic breast cancer is a distressing event. The days, weeks and months following your diagnosis may be very difficult. You will probably have intense emotions: fear, anger, confusion, loss and grief. These feelings may be even deeper and more intense than those you experienced with a previous diagnosis.
You may feel isolated and alone during a time when you need companionship and support. Make sure you are surrounded by loved ones and don’t be afraid to ask for help from family members, friends, coworkers or acquaintances who can assist, listen and support you. Also, we offer various support programs, free of charge, so don’t hesitate to contact us at 514-871-1717, ext. 250, or toll-free at 1-877-990-7171, ext. 250.
You may find it helpful to share what you’re going through with other women who also have metastatic breast cancer. You may also benefit from one-on-one support or you can participate in a self-help or support groups available online, by phone or in person.
It is important to talk about your diagnosis only when you feel ready. Take care of your emotions first. If you need to, wait until you have consulted your healthcare team and done your own research before telling others. The decision to talk about your situation is yours, whether you only want to share the news with one or two people or tell everyone.
Metastatic breast cancer will affect your marriage, as it has the potential to strain or to strengthen even well-established relationships. Don’t underestimate the impact your diagnosis can have on your partner, children and other family members. They also need to talk about it.
Difficulties include feelings of fear, anger and other emotions associated with the diagnosis, disruption of daily routines, increased isolation and withdrawal from social life, new financial pressures and new roles in the marriage.
Announcing the diagnosis to your children
A parent may find it difficult to tell their children about their diagnosis; it’s only natural to want to protect our children from news that might worry them. However, children can sense when something is wrong and will imagine the worst if the truth is kept from them. Despite your fears, there are ways to share your diagnosis with your children (and grandchildren), which will ease their feelings of fear, confusion and distress. You are the best judge of what your children can understand. Their reaction will depend on their age and developmental stage. Various resources are available to help you find the right words.
Young women face particular challenges, and some of their needs are different, as they are more likely to have a relatively new relationship, young children and an advancing career.
If you are young and have metastatic breast cancer, you are not alone. You can contact other young women who also have metastatic breast cancer to find the support you need. Building a community with other women who are going through a similar experience will help you break the isolation that having metastatic cancer can cause among young women.
Your treatment plan
Good communication with your healthcare team is key to developing a treatment plan. It is important you understand your diagnosis, prognosis and options. In making your decisions, consider your lifestyle, employment and other quality-of-life issues. Your healthcare team can help you make the best choices. Stress and anxiety may reduce your ability to absorb all the new information, so bring a family member or friend along to appointments with you.
If you were diagnosed with breast cancer in the past, you probably followed a standard treatment protocol. Treatment for metastatic breast cancer, however, will normally be individualized and tailored to your particular case. Every cancer is different, and treatment responses and side effects vary from one person to the next.
Several factors will influence your treatment. These include the characteristics of your primary cancer and metastases, the extent and rate of metastasis progression, including where it has spread, and your response to previous treatments and their effectiveness. Your age and health status will of course be considered too, as will other personal issues and choices (the number of hospital visits, the time required for each visit, side effects to be minimized, other chronic diseases, etc.)
Treatment usually begins with monotherapy (administration of a single medication). Then, you’ll undergo a test a few months after treatment begins to determine if the cancer is progressing (tumours getting bigger or spreading), regressing (shrinking or seemingly disappearing) or remaining stable (no change).
If the cancer is progressing, another treatment or, in some cases, a combination of treatments, may be suggested. Your doctor will advise you on your treatment options based on your follow-up results.
Your treatment choices have benefits, risks and side effects that can affect you greatly. Treatment decisions are difficult to make and you may need to go through this process more than once during your illness.
Who will be there for you?
Your healthcare team
After a metastatic breast cancer diagnosis, it is important to be surrounded by a healthcare team that can help you get through this period in the best way possible. These people will be with you for many years. You should be able to trust them and receive information that will allow you to make informed choices about your care and treatment.
Your healthcare team is multidisciplinary and includes oncologists, a family doctor, other specialists, nurses, physiotherapists, psychotherapists, psychologists and social workers. Your pharmacist is also an important source of information about the medications you are taking or planning to take.
Palliative care team
Palliative care is not only end-of-life care but also support for a very advanced illness. Your palliative care team will most likely be made up of specialized doctors and nurses and several other caregivers, depending on your needs (nutritionist, massage therapist, etc.). Their role is to relieve any pain, physical symptoms, depression, stress and anxiety stemming from a serious illness, to improve your quality of life. They can also help you navigate the healthcare system and provide advice to help you make often difficult and complex treatment choices.
Symptoms and side effects
Taking potential side effects into account must be part of your treatment decision-making. Side effects vary depending on the type of medication and your tolerance level, medical history and current health status.
Your healthcare team is responsible for assessing, as much as possible, your risk of developing side effects and for recommending an appropriate treatment plan.
Here are the most common side effects:
If you receive chemotherapy, your hair will become thinner and may fall out. You may also experience nausea, vomiting, diarrhea, constipation and mouth ulcers. No symptoms should be overlooked, so be sure to contact your healthcare team right away for treatment to minimize side effects.
- Fatigue is a frequent physical side effect of cancer or the treatment.
- Medication, radiation therapy and various complementary therapies can be used to manage pain. If not treated effectively, pain can cause fatigue and other symptoms.
- Your body needs white blood cells to fight infection. Neutropenia is the name given to low white blood cell counts. During your treatment, your healthcare team will monitor your symptoms and your white blood cell count so that it does not drop too low.
- Brain fog shows up as an inability to concentrate and as cognitive changes that include memory loss and an inability to think clearly. Symptoms will usually improve over time.
- Anxiety, depression and insomnia are common. There are various medications or forms of psychological support available to help you. You may also find relaxation techniques (yoga, tai chi, meditation, etc.) helpful.
- Some drugs used in chemotherapy can cause nerve damage, a condition called peripheral neuropathy. The first symptoms are tingling or numbness in the hands and feet. This condition can then progress to chronic pain or discomfort. If this happens to you, talk to your doctor right away.
Complementary therapies cannot replace recognized standard treatments for metastatic breast cancer. However, they can help you reduce symptoms and are a valuable addition to your care.
- Exercise helps maintain your muscle tone and relaxation. It can also reduce your fatigue and improve sleep.
- Nutrition is important to keep you as healthy as possible. Pay attention to what you eat, because an adapted diet can help you avoid the nutritional deficiencies caused by certain treatments and certain interactions that are not recommended.
- Acupuncture and massage can reduce pain and tension.
- Meditation, yoga, tai chi, therapeutic touch, reiki and visualization can be used to calm stress and anxiety.
Check with your healthcare team before beginning complementary therapies, as some of these may interfere with your treatments.
The certification required to practice complementary therapies varies by discipline and region. Make sure that the professionals you consult have expertise in treating people with advanced breast cancer.
Participating in clinical trials
Clinical trials are studies designed to test the effectiveness of new drugs or innovative treatments before being approved by Health Canada. Clinical trials are an opportunity to access new drugs that may extend your life or improve its quality. By participating, you contribute to medical research on metastatic breast cancer, and thus, are also helping others in the future.
If you would like to learn more, talk with your doctor and ask if you can participate in clinical trials. Eligibility criteria are different for each study. Your doctor will help you understand the processes, advantages and disadvantages of a particular clinical trial. While it is quite possible that you may benefit from the very rigorous follow-up offered to participants, participating in a clinical trial also involves an increase in the number of follow-up visits and tests, with no guarantee of benefit. The decision to participate in a clinical trial is yours, and you are free to withdraw at any time, for any reason.
Participation in a clinical trial is voluntary and there is no cost for treatment. However, you cannot choose the treatment you will receive: you may get the experimental treatment, the standard treatment to which it is being compared or a placebo. Although a placebo is an inactive substance, you will still receive the standard treatment for this type of cancer at the same time.
Managing your quality of life
The challenge for you and your healthcare teams is to strike the right balance between your quality of life and a treatment that is designed to prolong your life and relieve your disease. A good quality of life means your physical, emotional and social needs are met.
It is important to stay physically active to recover as much of your energy as possible. Walking, yoga or other forms of gentle exercise are all activities that will help you feel better both physically and emotionally. You can ask your healthcare team to help you plan a regular exercise program suited to your capacity. Remember to listen to your body and respect your limits. Palliative care and pain management are also important parts of your physical and emotional well-being. Massage, pain medication and other complementary therapies can help you better enjoy physical activity.
Living with metastatic breast cancer is challenging. To help you deal with all the emotions that may come over you, sometimes without warning, it’s very helpful to develop certain skills and strategies. Professionals and support groups for people living with metastatic breast cancer are there to help you. For more information, contact us at 514-871-7171, ext. 250, or 1-877-990-7171, ext. 250.
Maintaining a social life beyond cancer will improve your quality of life. Even if it is difficult during treatment, try to make time to see the people who are important in your life. Do the things that matter most to you. Focus on the positive support you receive from people who are able to help you.
Many women living with metastatic breast cancer choose to take on end-of-life tasks: getting a will drawn up, preparing a protection mandate in case of incapacity, specifying their wishes for end-of-life care and even planning their funerals.
To find out more, consult a notary and a financial advisor.