Aside from skin cancer, breast cancer is the most common cancer. White women have the highest chance of getting breast cancer of any racial or ethnic group. But Black women have the highest rate of dying from it, making it the leading cause of cancer death in Black women. It’s the second leading cause of cancer death for white women.
If breast cancer leads to death, it’s because the cancer spread from the breast to other body parts – most often bones, the lungs, the liver, or the brain. You might hear a doctor call that “metastasized.” Black women have a higher rate of metastatic breast cancer, primarily because of factors rooted in structural racism like low access to high-quality care, delayed breast cancer diagnosis, and more.
Metastatic breast cancer is unlikely to go away. Treatment focuses on improving quality of life, helping you live longer, containing the cancer spread, and relieving symptoms. Still, you can be intentional about your care and live actively and meaningfully with metastatic breast cancer.
Below, experts explain how they coach people with metastatic breast cancer, especially women of color, on how to care for themselves and improve their quality of life.
Actively Participate in Your Treatment Planning
Metastatic breast cancer treatment aims to slow down cancer growth. Treatment might stop working later on. If it does, your care team might include new treatment based on factors such as:
- Where the cancer has spread
- Whether you’re at menopause
- Your general health
- Whether you want to carry on with treatment
- Your previous treatment options
No matter what your treatment stage is, Lindsay Vlaminck, a breast health navigator at SurvivorRN, recommends that you take an active role in your treatment planning because you’re an equal partner with your care team.
Nayla Cepero, an oncology nurse navigator at Miami Cancer Institute, advises that you ask your care team about all aspects of your diagnosis, treatments, and treatment side effects and risks.
“If you don't feel comfortable speaking up to your team, it can help to write down your questions and concerns before your appointment, or write out your concerns in a message through your online portal, if available,” Vlaminck says. “Ultimately, you have the final say in how and when you receive treatment, and if you don't feel supported by your care team to make these decisions, it is OK to look for an oncologist that you feel comfortable working with.”
Glynda Grays, a nurse care manager at The Clinic by Cleveland Clinic, agrees with Vlaminck, adding that your care team should make you feel comfortable sharing your thoughts, concerns, and fears with them so they can give you as much support as you may need.
Stay on Schedule (as Much as Your Health Allows) With Treatment
Because cancer treatment has a window of time when treatments are the most effective, staying on top of your treatment schedule improves your chances for better outcomes, Cepero says.
“One of my mentors during my training told me that chemotherapy treatments and treatment regimens are almost like a recipe,” says Lauren Carcas, MD, a medical oncologist at Miami Cancer Institute. “And if you don't use all of the ingredients intended in the recipe, you don't get the outcome you want.”
You can ask your care team for a printout of your upcoming appointments. Kristin Rojas, MD, a breast cancer surgeon at the University of Miami Sylvester Comprehensive Cancer Center, says she prints out appointment schedules for her patients when they visit. Cepero also advises using your patient portal to check for all upcoming visits and tests and set reminders for them.
To keep track of your treatment schedule, Cepero and Vlaminck suggest that you:
- Keep a master calendar of appointments. You can use a paper planner or an electronic calendar like Google Calendar or planner apps, which you can download on Google Play or Apple’s App Store.
- Plan for transportation, childcare, and work so they don’t prevent or delay you from getting care. You can reach out to your loved ones to help with making necessary arrangements to make sure you don’t miss treatment. For example, your loved ones can drive you to your appointment when you’re not feeling well enough.
- Have your clinic's contact numbers, and be sure you can reach them anytime. This way, you can reschedule appointments and request changes when you need to.
Become More Aware of Your Health Status
You can make more informed decisions about your care when you know and have access to every detail of your health. Fortunately, the 21st Century Cures Act backs up your right to access electronic health information.
You can request access to your electronic medical record from your health care provider. They may release your medical information or document – pathology reports, health care provider notes, or imaging reports – as soon as they are available, Vlaminck says.
You can also get your health information from your electronic patient portal. But don’t try to figure out these documents on your own, Vlaminck warns. Instead, use this access as a tool to discuss your questions and concerns with your care team.
Rojas adds that your reports may be in a language only medical professionals can understand. So reading them by yourself can leave you feeling scared or nervous. She advises you to wait until your next appointment to review your health information with your health care provider. If your doctor isn’t available, try talking to a nurse practitioner or clinic staff to help you understand.
In addition to requesting access to your health information to know your status, Vlaminck advises that you be more aware of your body and symptoms. She says to pay attention to any new symptoms, such as headaches, back pain, chronic cough, or changes in your vision or balance. “These could be signs that your cancer is progressing and you need immediate attention from your care team.”
Also, make note of the side effects you might be having from your treatment and talk to your care team if the side effects are serious, she says. “They may recommend additional medications or therapies to manage these side effects.”
Make Appropriate Lifestyle Changes
Making necessary lifestyle changes is an important part of your metastatic breast cancer treatment. And it’s a part that you’re most in control of, Carcas says. Lifestyle changes may help you live a healthy and functional life and reduce your risk of other chronic illnesses, Rojas says.
Lifestyle recommendations that may help:
Be as active as you can. Physical activity can help manage symptoms and treatment side effects, like fatigue and poor stamina, Carcas says.
Interestingly, a 2019 study suggests that physical activity is tied to an extended life expectancy in women with advanced breast cancer. The study said that an extra hour of moderate exercise – like walking at a moderate pace, doing yoga, or gardening – may increase survival chances and cut the risk of death by 23%.
Rojas says physical activity may also help:
- Improve your fitness level
- Reduce the risk that you might have a heart attack or other heart disease
- Strengthen your muscles
- Decrease your risk of falls
- Manage weight
- Improve your emotional well-being
- Increase your satisfaction about your life and your quality of life
If you’re interested in starting a physical activity plan, Rojas advises you to talk to your care team first. They can refer you to a physical therapist, occupational therapist, certified exercise professional, or rehabilitation specialist.
Eat healthy foods. A healthy diet can help manage medication side effects, improve how well your treatment works, and improve survival and quality of life with breast cancer.
Rojas recommends having more plant-based options in your foods and generally having nutrient-rich foods. She suggests avoiding overly processed food and limiting the amount of animal-based foods – like red meat and dairy – you eat. If you’re more of a meat eater, Carcas says you can stick to a Mediterranean-type diet with fish, poultry, and lean meats.
Paula Rosenblatt, MD, an oncologist at the University of Maryland Greenebaum Comprehensive Cancer Center, warns you not to go on extreme diets, like eliminating all sugars, because it’s unnecessary and not helpful. “Go with moderation,” she says.
If you’re interested in taking supplements, Rojas suggests speaking with your health care provider to know which ones are right for you and won't affect your treatment. But she warns that people with breast cancer should stay away from certain supplements because the FDA doesn’t study or regulate them.
Get enough quality sleep. The importance of sleep, particularly in people with breast cancer, cannot be overstated, says Carcas. The body heals and grows during sleep. The body also makes new healthy cells that can take over cancer cells, she adds.
The amount of sleep each person needs is different. But Carcas suggests that you get at least 7 hours of sleep every night.
“Sleep difficulties are a common side effect of cancer treatment and may come from anxiety tied to cancer.” If you have trouble sleeping, Carcas suggests trying good sleep habits like:
- Keeping the bedroom cool and dark
- Limiting exposure to blue light from TVs, phones, or other electronic gadgets
- Using white noise (from white noise machines or apps) in the bedroom to block out noises
- Wearing comfortable clothing to bed
- Exercising during the day, not close to bedtime
Rosenblatt suggests avoiding naps if you can to protect nighttime sleep quality. But as the cancer progresses and your body changes, you might need to take short naps, and you can, she says.
If good sleep habits don't improve your sleep, think about talking with your care team about other options, like medications, that may help, Carcas says.
Rojas recommends other lifestyle changes that can benefit quality of life, including:
- Quitting smoking
- Limiting alcohol intake
- Taking vaccines appropriate for you
Be Intentional With Your Mental Health
Your mental health greatly impacts your physical health, Rosenblatt says. Cancer diagnosis and treatment can take a toll on mental health, Rojas adds. So it’s extremely important you also make a point of taking care of it.
Cepero recommends getting mental health help as you go through your cancer treatment journey. She explains that stress, depression, and anxiety are common mental health problems in people with metastatic breast cancer, and care that involves your mental health should be a part of your treatment.
You can ask a care navigator, social worker, or a health care provider to recommend a mental health professional and support groups to manage mental and emotional distress, Cepero says.
Cepero also suggests stress-relieving activities like meditation, yoga, exercise, reading, journaling, walking, listening to music, or talking to a loved one to improve mood and energy.
Create Time for Self-care
Find time to do things that bring you joy, peace, and motivation, Cepero says. Self-care may include “participating in hobbies, making time for relaxation, spending time with loved ones, and engaging in other activities of interest.”
In addition, “finding someone you can trust and connect with is crucial for self-care,” Vlaminck says. For instance, people with breast cancer often feel grief over the loss of future dreams and goals. Speaking with a therapist, a cancer coach, or a support group may help you unpack these feelings and take control of your present life.
She recommends finding women of color you can connect with and share your story with in groups like For the Breast of Us.
Jane Mendez, MD, chief of breast surgery at Miami Cancer Institute, suggests yoga, breathing exercises, meditation, and faith-based outlets like prayer as self-care habits that can bring balance to your heart, body, mind, and soul and help you stay grounded throughout your journey.
If you’re comfortable with the likelihood that death may happen, you can do things to save your memory for loved ones, Vlaminck says. “You can write letters to your children, friends, or family to open on significant events, like graduations, weddings, or new babies,” she suggests. You can also make recordable storybooks or video diaries of yourself for your loved ones.
American Cancer Society: “Cancer Facts and Statistics,” “Breast Cancer Death Rates Are Highest for Black Women—Again,” “More Black Women Die from Breast Cancer Than Any Other Cancer.”
World Health Organization: “Breast cancer.”
Breast Cancer: Basic and Clinical Research: “Targeting Breast Cancer Metastasis.”
Journal of the American College of Radiology: “Racial Disparities in Diagnostic Delay Among Women With Breast Cancer.”
UpToDate: “Patient education: Treatment of metastatic breast cancer (Beyond the Basics).”
National Institutes of Health: ”THE 21ST CENTURY CURES ACT.”
Lindsay Vlaminck, breast health navigator. SurvivorRN LLC, Illinois.
Nayla Cepero, oncology nurse navigator, Baptist Health Cancer Care, Florida.
Glynda Grays, nurse care manager, The Clinic by Cleveland Clinic.
Lauren Carcas, MD, medical oncologist, Baptist Health Cancer Care, Florida.
Kristin Rojas, MD, breast cancer surgeon, University of Miami Sylvester Comprehensive Cancer Center, Florida.
Jane Mendez, MD, chief of breast surgery, Baptist Health Cancer Care, Florida.
Paula Rosenblatt, MD, oncologist, University of Maryland Greenebaum Comprehensive Cancer Center, Maryland.
For the Breast of Us.