Advocating for Yourself With Metastatic Breast Cancer

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

Self-advocacy not only leads to better care, but it can turn feelings of hopelessness and helplessness into hope, empowerment, and healing.

Here’s how to advocate for yourself with advanced breast cancer.

Educate Yourself

Learn as much as you can about advanced breast cancer.

“Knowledge is power,” says Diana Abehssera, a breast cancer survivor and patient experience lead for Leal Health. 

Educating yourself makes it easier for you to make informed decisions about your treatment, which may lead to a better outcome. Start with your doctor. Ask questions about things you don’t understand. Do research online. Visit websites for nonprofit organizations like the American Cancer Society, National Coalition of Cancer Survivorship, and Susan G. Komen.

Learn about your treatment options. “Advanced, cutting-edge treatments may be available to you, some of which may be outside of your normal hospital setting,” Abehssera says.

Advocate for Yourself at Your Doctor’s Office

“Be a partner to your doctor in your health care decisions,” says Abehssera. “During cancer, the stakes are high, and you should absolutely have a say in your treatment plan.”

Try these tips for self-advocacy with your doctor:

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

Speak up at your doctor’s office. Ask questions, take notes, and speak up if you don’t understand something. Be clear about your needs, preferences, thoughts, and feelings.

Seek out second opinions. This is especially important if you have a complex case.

Be open to new treatments and clinical trials. Finding the best care may mean participating in a clinical trial, which can give 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 don’t get better in a couple of weeks, or if you feel like something is wrong, talk to your doctor.

Talk to Family and Friends

“Family members are affected by your diagnosis, too,” says Rebecca Crane-Okada, PhD, an advanced oncology certified nurse in Santa Monica, CA. “Sometimes the whole family needs to get together and talk about changes that will make things better for the whole.”

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

“Be as clear as possible about what kind of support you want and from whom you want it,” says Louise B. Lubin, PhD, a clinical psychologist in Norfolk, VA, and author of Your Journey Beyond Breast Cancer: Tools for the Road.

Try these tips to get support from friends and family:

• Accept help. Remember that people generally want to help and helping feels good.
• 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 who shares updates with others.
• Ask for help with chores like childcare, cleaning, cooking, and grocery shopping.
• Keep a calendar with all your appointments and things you need help with.

It may help to have family counseling sessions. “Remember, cancer is a family affair,” says Lubin.

Speak Up for Yourself at Work

If you choose to work, you can make things smoother by speaking up for what you need. Talk to your manager or human resources department. Maybe it’s a flexible work schedule or an alternating schedule that helps you create a better work-life balance, says Crane-Okada.

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

Take Care of Your Financial and Legal Needs

Advocating for yourself also means getting organized, making decisions, and planning for the future. When you have your affairs in order, you have more freedom to focus on what’s really important to you.

Do you need to file for disability insurance? Do you need a trusted family member to pay your bills, follow up with insurance, or take care of your other accounts?

Talk to people who can help you put things in order, like a disability expert, financial expert, estate planner, or lawyer.

Carve Out Time for Yourself

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

“Making time for family, fun, and things you find enjoyable is just as important as making time for treatment and follow-up visits,” says Crane-Okada.

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