Support yourself against metastatic breast cancer

With advanced breast cancer, it’s important to speak up for yourself. This is called self-advocacy and involves making your views, needs, desires and interests known.

Empowerment not only leads to better care, but can transform feelings of hopelessness and helplessness into hope, empowerment and healing.

This is how you can protect yourself in case of advanced breast cancer.

Educate yourself

Learn more about advanced breast cancer.

“Knowledge is power,” says Diana Abehssera, breast cancer survivor and chief patient experience officer at Leal Health.

Self-education makes it easier for you to make informed decisions about treatment, which can lead to better outcomes. Start with your doctor. Ask questions about things you don’t understand. Research online. Visit the websites of nonprofit organizations such as the American Cancer Society, the National Coalition of Cancer Survivorship, and Susan G. Komen.

Learn about your treatment options. “You may have advanced, cutting-edge treatments available to you, some of which are outside the standard hospital setting,” says Abehssera.

Protect yourself in the doctor’s office

“Be a partner with your doctor in your health care decisions,” says Abehssera. “The stakes are high when you have cancer, and you absolutely need to factor that into your treatment plan.”

Try these tips for self-advocacy with your doctor:

Take notes before meetings. Organize your thoughts. Write down a list of questions. Be ready to communicate.

Talk to the doctor’s office. Ask questions, take notes, and let me know if you don’t understand something. Be aware of your needs, preferences, thoughts and feelings.

Get a second opinion. This is especially important if you have a complex case.

Be open to new treatments and clinical trials. Finding the best care can mean participating in a clinical trial that gives you access to cutting-edge therapies.

Know your body

Knowing your body is an important step in taking care of it and making sure you get the care you need. Keep a symptom diary. If you have new symptoms that do not improve within a few weeks, or if you feel that something is wrong, see your doctor.

Talk to your family and friends

“Family members are also affected by your diagnosis,” says Rebecca Crane-Okada, PhD, an advanced oncology registered nurse in Santa Monica, California. “Sometimes the whole family needs to come together and discuss changes that will make the whole situation better.”

Your closest friends and family are an important part of your well-being and care, so it’s important to talk about what you need.

“Be as clear as possible about what support you’re seeking and from whom,” says Louise B. Lubin, PhD, a clinical psychologist in Norfolk, VA, and author of the book. Your Journey Beyond Breast Cancer: Travel Tools.

Try these tips to get support from friends and family:

• Accept help. Remember that people usually want to help and it feels good to be helped.
• Be specific about what you need.
• Make a list of tasks they can do for you.
• Let them know if you need physical, emotional or spiritual support.
• Ask one person to be the designated communicator to share updates with others.
• Ask for help with chores like babysitting, cleaning, cooking, and grocery shopping.
• Keep a calendar of all your appointments and things you need help with.

Family counseling can help. “Remember, cancer is a family affair,” says Lubin.

Talk about yourself at work

If you decide to work, you can make things go more smoothly by saying what you need. Talk to your manager or HR. It might be a flexible work schedule or a rotating schedule that helps you create a better work-life balance, says Crane-Okada.

You may need workplace accommodation. Find out what you’re entitled to and how to get them by talking to your doctor, and learn more about the Family Medical Leave Act, short-term disability, and long-term disability.

Take care of your financial and legal needs

Standing up for yourself also means being organized, making decisions, and planning for the future. When your affairs are in order, you have more freedom to focus on what is really important to you.

Do I need to take out disability insurance? Do you need a trusted family member to pay your bills, track your insurance or take care of other bills?

Talk to people who can help you get things in order, such as a disability specialist, financial expert, estate planner, or attorney.

Take time for yourself

Taking care of your wants and needs also means enjoying the things that make you happy.

“Making time for family, fun, and things you enjoy are just as important as treatments and follow-ups,” says Crane-Okada.

Prioritize joy by doing the little things that make you feel better. Go to your favorite coffee shop. Pick up a bunch of your favorite flowers. Go to the park. Being outdoors, especially in nature, can help you feel good.