The way we speak and think about breast cancer is often focused on early detection and aggressive treatment. We’re taught that catching cancer early makes a cure more likely. When someone is undergoing breast cancer treatment, we assume the goal is a cure, and then treatment will end.
That model doesn’t describe metastatic breast cancer (MBC). In fact, MBC (also known as stage IV breast cancer) is incurable, but treatable. Treatment for MBC may last for many years or be lifelong. Living with MBC is often very different from living with earlier stages of breast cancer.
This year, 276,480 women will be newly diagnosed with breast cancer. Between 20 percent and 30 percent of these cases will either be stage IV at diagnosis or eventually progress to stage IV. MBC has long been poorly understood. As we learn more about MBC, and more women share their experiences, there’s a growing understanding of stage IV breast cancer and better support for women who are living with it.
Breast cancer develops in the breast tissue, but breast cancer cells can spread to other parts of the body through the lymphatic system and blood vessels. The process of cancer cells spreading outside the breast is known as metastasis. When breast cancer cells or tumors are found in other parts of the body, they are known as metastases. Breast cancer that has spread in this way is referred to as metastatic, or stage IV, cancer. Read more about how breast cancer is staged and graded.
Between 5 percent and 9 percent of women have MBC when they are first diagnosed with breast cancer. When MBC is the initial diagnosis, it is known as de novo metastatic breast cancer. More often, MBC is a recurrence of a previous breast cancer diagnosis. This is also known as a distant recurrence.
Breast cancer metastases are growths of breast cancer in parts of the body outside of the breasts and surrounding tissue. A common misconception is that because MBC occurs in, for example, the brain, it is brain cancer. In actuality, the cancer cells remain breast cancer cells regardless of where they grow in the body.
Different types of cancer tend to metastasize in certain body parts or tissues. Breast cancer can spread anywhere in the body, but it tends to affect certain organs more than others. MBC most commonly metastasizes in the bones, liver, brain, and lungs. MBC can sometimes affect reproductive and sex organs and the gastorintestinal tract.
Bone metastasis is the most common location for MBC. More than half of all women with MBC have bone metastases which predominantly affect arm and leg bones, and the spine, ribs, and pelvis. The most common symptom women reported was new bone pain. Learn more about treating bone metastases.
Lung metastasis is usually asymptomatic, meaning it doesn’t show symptoms. When it does, symptoms include shortness of breath, persistent dry cough, and pain. Learn more about treating lung metastasis.
Brain metastasis occurs in 10 percent to 15 percent of women with MBC. Symptoms of brain metastases depend on where in the brain they occur and which neurological functions are impacted. They include pain, memory problems, and vision or speech changes. Learn more about treating brain metastasis.
Often, MBC is discovered because of the symptoms it causes. Pain is a common symptom that accompanies breast cancer metastasis in all regions of the body. Specifically, pain associated with MBC is new or sudden pain that is noticeable, fairly severe, and tends to recur. Sometimes MBC doesn’t have any noticeable symptoms and is detected during other routine scans or tests.
When MBC is suspected, several imaging tests, labs, and other procedures are conducted to accurately diagnose the potential metastasis, locate tumors, and assess the extent. The following tests are used to investigate and diagnose MBC:
Test results can also serve as a baseline to measure how a person’s cancer is responding to a treatment or to check disease progression.
After a cancer diagnosis, most people want concrete information. They ask questions like, “How long?” or “How likely?” Sometimes doctors don’t have an answer. “I ask [my oncologist] all the time ‘Am I going to live?’ but he won't answer,” explained one MyBCTeam member living with MBC. “I eventually decided that I do not want this answer. Not today.”
Calculating an individual’s MBC prognosis is complex. Survival rate statistics don’t always reflect new and experimental treatments. The prognosis for MBC varies greatly from person to person and cancer to cancer. MBC prognosis depends on many factors specific to the person, as well as the type of MBC they have.
Doctors use several data points about an individual’s breast cancer to develop a treatment plan and discern the prognosis. This information may include:
Many personal characteristics can affect MBC prognosis. Age plays a role in MBC progression and recurrence. A woman’s risk for breast cancer increases the older she gets. Hormonal factors during and after menopause may also play a role. Your genetic makeup can also affect how breast cancer behaves in your body.
The longer a woman survives with MBC, the longer she is likely to continue to live with MBC. This concept is known as conditional survival.
The stark reality is that the prognosis for MBC is not as good as the prognosis for other breast cancer stages. About one-third of women survive at least five years after their initial MBC diagnosis. MBC’s progression can also be unpredictable. Some women live 10 or more years with MBC.
MBC will almost always mean a shorter life expectancy than for those without MBC. Almost certainly, MBC will require being on treatment and under close medical watch for the rest of one’s life. More than 42,000 people will die from breast cancer in 2020, and MBC will cause most of these deaths. However, a diagnosis of MBC is not a death sentence, and it is not the end.
The treatment philosophy behind MBC management is very different from other cancer stages. Stage IV cancer treatment aims to manage symptoms, extend life expectancy, and preserve a person’s quality of life. The potential benefit of each treatment is heavily weighed against potential negative outcomes.
Systemic medications like hormonal therapy, treatments like radiation and surgery, and targeted therapies are all options for treating MBC. Chemotherapy is also often a part of MBC treatment. While it can be effective in destroying cancer cells, chemotherapy can cause severe side effects and have a detrimental impact on a person’s quality of life. All treatments for MBC carry potential risks, as well as potential benefits. Deciding how much or how little risk, and whether or not the benefits are worth it, underpin the philosophy of MBC treatment.
Treating MBC differs greatly from other breast cancer treatment in that there is no finish line. Managing MBC entails continual, lifelong treatment. Some women live with MBC as a chronic condition for years. Essentially, women with MBC continue a specific treatment until it no longer works. In consultation with their breast cancer treatment team, they will then move on to the next best MBC treatment options. Some MBC treatments may be new or experimental.
Living with MBC can be a heavy emotional burden, especially on bad days. Social support is an important part of living well with MBC. One MyBCTeam member shared, “I can handle the physical stuff, the almost-weekly chemo, but I'm having trouble dealing with it all mentally. I'm angry, sad, frustrated. … Does anyone else have some good coping skills?”
Though more than 168,000 women are living with MBC in the United States, life with MBC can feel very lonely. Younger women with MBC have an especially difficult time coping with the challenges — physical, mental, emotional, and social. Connecting with others who understand the day-to-day issues of living with stage IV breast cancer can improve your mood and help lessen feelings of isolation.
More than a quarter of people with advanced-stage cancer experience depression. Chemotherapy, hormonal therapy, and some medications can worsen depression. If feelings of anxiety, sadness, or anger last longer than a few weeks or disrupt your day-to-day life, you should speak to your doctor about treatment options.
Remember, you are not alone. It’s OK to ask for help. It can feel good to give advice and support, too. Nearly 3,000 members of MyBCTeam report being diagnosed with stage IV breast cancer, and many are always ready with a kind word. “There are many stage IV gals managing their disease, motivating through their life, and doing it quite well,” said one MyBCTeam member. “If they hiccup with a challenge, they come here for support and guidance, get their nose pointed north again, and keep on keeping on.”
Are you living with metastatic breast cancer? Has support from MyBCTeam helped you through a difficult time? Comment below or post on MyBCTeam.com.