Navigating the Health Care System With Metastatic Breast Cancer

Keep in mind that side effects can change over time and new ones might start. Some may be short-term while others will last longer. Side effects can also happen at different times, during treatment, or even months afterward. Track and write down your side effects to make it easier for you to describe them to your team. Your doctor might even give you a tracking form to grade each symptom. 

Discuss emotional side effects. Cancer survivors who talk about their emotional and social needs with a health care professional are less likely to feel symptoms of depression. They're also more likely to have a more positive attitude toward living with cancer and an overall better outcome. Yet only about 1 in 3 people bring up such needs. It may feel harder to talk about fears and other emotions than physical side effects. But this is an important part of what you're going through. Help to ease difficult emotions should be part of your care plan. Emotions related to your cancer diagnosis and treatment can be hard to handle. Don't ignore your emotional side.

Discuss complementary treatments. Some therapies help with both the physical and the emotional side effects of cancer and cancer treatment. For instance, acupuncture helps with nausea and pain. Yoga or tai chi can ease pain as well as stress. Focused deep breathing and mindfulness, a type of meditation, can help ease anxiety and pain and, in turn, take the edge off side effects. Ask whether any of these therapies are offered at your cancer center.

Overcome Care Biases

Racial biases exist in the medical system. You might feel that you aren’t getting the amount of information or even the respect that you’re entitled to. Efforts are happening to make care more equal, but you don’t have to wait for change to be your own advocate. You can also connect with organizations that will advocate for you, whether to get cutting-edge or more aggressive treatments or even help make arrangements to get to your appointments. 

Do your own research. Contact one or more breast cancer organizations (see the list below) to learn about the best treatments for your specific type of breast cancer. Ask about the resources they offer.

Find a patient navigator. The role of a patient navigator is to help guide you through the health care system and overcome barriers to care, including racial differences. The first patient navigator program was created in 1990 by Harold Freeman, MD, a surgeon at New York City’s Harlem Hospital. Its goal: to lower the high breast cancer death rate among Black women, half of whom had late-stage breast cancer when they were diagnosed.

Uncover Financial Resources

Money hurdles can be as difficult as any other part of cancer care. Not having insurance can stand in the way of getting the treatments you need. Even with insurance, copays and deductibles can be overwhelming. Here are ways to get help with bills:

• Social Security Disability (SSDI). If you were previously able to work and paid into Social Security, you may qualify for Social Security Disability payments. You can speed up the process when you apply under the Compassionate Allowances program.
• Free or low-cost health services. Depending on your income, you may be able to access care through one of America’s Essential Hospitals, created for underserved and uninsured people, or through a Hill-Burton facility.
• Programs to help cover medications. Many drug manufacturers have patient assistance programs that offer medication at low or no cost through their websites if you meet certain financial criteria.  You can also use the Medicine Assistance Tool, a search engine of PhRMA, the pharma industry trade association, to look for patient assistance programs across a wide range of drugmakers. NeedyMeds has resources for the uninsured. ThePatient Advocate Foundation’s Co-pay Relief program helps people who have insurance pay for their medicines.
• Financial assistance organizations. The Cancer Financial Assistance Coalition represents more than a dozen  groups, including the American Cancer Society, the HealthWell Foundation, and CancerCare, that offer financial grants and other help to underinsured cancer patients.
• The Komen Financial Assistance Program offers eligible people with metastatic breast cancer $750 that can be used for expenses like rent, food, transportation, and child care.
• The Assistance Fund has programs that help cover treatment, copays, insurance premiums, and other types of medical expenses.
• Genevieve's Helping Hands Charity offers grants to mothers under age 40 who have breast cancer, along with caregiver and nutritional support and help to find financial aid.
• The National Council on Aging’s Benefits Checkup search program lets you hunt through 2,500 programs, including prescription drug assistance, available for older Americans with limited income and resources.

Get Cancer Survivor Support

As important as medical care is, you also need care for your inner self to adjust to life during and after treatment. One of the best ways to get this help is through a support group.

There are both national and community breast cancer support groups that have in-person and online meetings. You can share experiences about day-to-day life with metastatic breast cancer with other survivors. You can also learn about local resources to help with practical issues and more effective ways to talk to your medical team, plus get ideas to manage personal issues. In general, women who talk to other women living with breast cancer get emotional and physical benefits: they have less pain, a better mood, and even higher survival rates. Yet research shows that Black women are less likely to have other breast cancer survivors in their support networks, a gap that should be filled.

It's also helpful to talk one-on-one to get support. Many organizations have phone lines you can call, like Living Beyond Breast Cancer’s Breast Cancer Helpline.  The Chrysalis Initiative has one-on-one coaching that can be tailored to what you need. 

Tap Into 360-Degree Resources

There are many organizations devoted to women with metastatic breast cancer, and many that are specifically working on behalf of women of color to help them get past obstacles as they go through their treatment journey:

• The African American Breast Cancer Alliance offers support groups, educational resources and retreats.
• The Chrysalis Initiative supports Black women and others diagnosed with breast cancer. It has individual coaching, mobile resources, and online learning opportunities including a digital resource called BC Navi to help erase inequality in breast cancer care.
• For the Breast of Us  focuses on education and advocacy for women of color and offers webinars with medical experts and video roundtables.
• Latinas Contra Cancer provides educational resources, patient navigation and family support group services to underserved and low-income Spanish-speaking women.
• Living Beyond Breast Cancer offers information from a network of health care, wellness, legal, and financial professionals and a variety of programs and services for all women including the LGBTQ+ community. LBBC has a virtual conference on metastatic breast cancer.
• The Metastatic Breast Cancer Alliance is a broad group of cancer nonprofits, individual patient advocates, and pharmaceutical and biotech companies with the mission to improve the lives of people with this diagnosis.
• Sisters Network, Inc. is a national African American breast cancer organization that provides financial assistance and educational resources and works to show the impact breast cancer has on women of color.
• Touch, The Black Breast Cancer Alliance brings together patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work toward getting rid of breast cancer in women of color.