Almost 30% of women who have early-stage breast cancer later get metastatic breast cancer. For about 6% of women, metastatic breast cancer is their first diagnosis. Sometimes the first treatment doesn’t work, and you need to try different therapies. Metastatic breast cancer can’t be cured, but treatment can extend your life.
Metastatic breast cancer treatment for women of color has unique issues. Black and Hispanic women often have a more aggressive subtype of cancer and worse survival rates than White women. Going into treatment knowing this – and knowing what to ask of your care team – can help you navigate your treatments with more confidence.
Start With Honest Conversations About Your Prognosis
Talking about your prognosis when the first metastatic breast cancer treatment doesn’t work can be a scary, challenging conversation for you and your doctor. It’s a time to step back, assess your options, and think about what the future looks like. Sarah Louden of Total Health Oncology, the largest U.S. provider of oncology education, encourages patients of color and their doctors to have honest, open conversations about the differences in outcomes for women of color, compared to White women.
Louden suggests that you and your doctor realize three key truths to make sure you’re operating from a point of mutual understanding: Black women are diagnosed with breast cancer at younger ages, they are diagnosed with more aggressive disease, and they die at almost double the rate of White women.
Hispanic women have some similarities. They have a lower overall incidence of breast cancer, but they often are diagnosed at younger ages and with a more aggressive disease.
The reasons for these disparities aren’t fully known, but social, economic, behavioral, and biological factors are involved.
Louden says it’s important to understand these differences so your care team can help make sure that you’re following your treatment plan and that your care plan addresses barriers to keeping your standard of care.
Louden encourages patients of color to say to their doctor: “People like me in my community are being diagnosed with later-stage disease that’s more aggressive, and they’re dying at double the rate of other communities. You have to address this with me.”
Make a Treatment Plan Based on Quality of Life
Treatment decisions should begin with a discussion of your values and goals. What side effects can you just not tolerate? What activities mean the most to you to keep doing? Keep these goals in mind when evaluating pain control, aggressiveness of the treatment, and side effects.
A brief overview of metastatic breast cancer treatments
People with breast cancer have a wide range of treatments to choose from, even for second- and third-line therapy. And more treatments are in development. Metastatic breast cancer treatment often involves a combination of therapies and depends on your specific type of cancer and where the disease has spread. Chemotherapy, hormone therapy, targeted therapy, and immunotherapy may be some of the treatments your doctor recommends.
Black and Hispanic women are more likely than White women to have an aggressive subtype of breast cancer called triple-negative breast cancer. You have many options of chemotherapy and targeted treatments for first- and second-line therapy. Sacituzumab govitecan-hziy is a newly approved targeted therapy for metastatic breast cancer, intended for people who have already received at least two types of treatments.
Your doctor may also suggest surgery for specific issues or for tumors that have spread to certain areas of your body, such as the brain. Radiation therapy may also be used to shrink or slow tumor growth.
Ask for palliative care
When starting any treatment, talk to your doctor about palliative care right away. You can get palliative care while you’re actively having treatment, and it’s meant to ease the symptoms of your disease and therapies so that you can stick to your treatment plan as you’re supposed to. American Society of Clinical Oncology (ASCO) practice guidelines recommend that all patients with advanced cancer be offered palliative care along with their treatment.
Palliative care meets you and your family or loved ones where you are in your cancer journey.
“Palliative care is here to affect the experience of what the cancer is doing and what the therapies are doing to make them more tolerable,” says Dawn Gross, MD, PhD, a palliative care doctor at UCSF Health. “When someone is racked with pain or uncontrolled nausea or fatigue, it’s really hard to then speak toward what brings their life pleasure. Once those things are addressed, we can support people in the spiritual, emotional, and psychosocial aspects.”
Palliative care is also there to help people think about the future and help guide tough conversations with family, friends, or doctors. You can get help completing advance directives or other end-of-life care plans.
Services offered within a palliative care program vary by health care facility, but far too few people take advantage of them. Women of color are even less likely to get this service. If your doctor doesn’t bring it up, ask about it. Look for the program in your institution’s directory, and call them directly if you need to. You may also be able to get palliative care virtually from a larger cancer center if you have limited options locally.
Questions to Ask Your Doctor
You are your own best advocate, but it also helps to bring someone with you to appointments. This is an emotional, overwhelming time. This person can help make sure you remember your questions and take notes for you.
When considering second- and third-line treatment options, make sure you understand the basics of your disease, such as the subtype of breast cancer you have and where and how much the disease has spread. When it comes to treatment, here are just a few essential questions to ask your doctor:
- What are my treatment options, and what are the goals of those options?
- What are the common side effects of each therapy?
- What services are available to control or ease my side effects and symptoms?
- What supportive services are available to me and my family?
You can ask your doctor more than just questions about your treatment. Your ability to follow through on a treatment plan can depend on other social, economic, and emotional factors. You can also ask your doctor:
- Can any of my appointments be virtual instead of in person?
- Can you connect me with transportation services to help me get to and from my appointments?
- Are there programs or financial counselors who can help me afford my treatments?
- How can I work with a social worker or case manager to get access to other services I may need as I go through treatment?
Metastatic Breast Cancer Clinical Trials
By this point, you may have already talked to your doctor about clinical trials. Trials open up access to other treatment possibilities, and they provide valuable information for women of color.
People of color are greatly underrepresented in clinical trials and too often aren’t even offered information about them. Because so few people of color are in trials, it’s harder to understand the differences in metastatic breast cancer outcomes and to come up with therapies to close those gaps.
One study found that 40% of Black people surveyed said no one on their care team talked about clinical trials with them. But, 83% of Black respondents said they would consider taking part. Ask your care team what’s available to you. More and more companies and research centers offer virtual access to trials, making it easier to take part.
Clinical trials are not a last resort. They’re a viable path for treatment that your care team should discuss early in the treatment process. Ask your care team:
- What trials are available to me?
- How am I protected?
- What do I get out of taking part in this trial?
- How do you as my doctor stay involved in my care?
- Can I speak to someone who has been through this or another clinical trial to hear about their experience?
If your doctor doesn’t discuss clinical trials with you, get a second opinion.
Ending Aggressive Treatment for Metastatic Breast Cancer
Cancer therapies challenge the body. Sometimes, second- and third-line therapies work with bearable side effects. Other times, the side effects are exhausting. You always have the option to pause or end treatment on your terms.
Your quality of life and goals should always drive treatment decisions, even the decision to stop treatment. Palliative care can help you communicate that decision and move toward next steps. Sometimes, even doctors struggle with these conversations because they fear they are removing hope. People with cancer can also find it hard to make this choice, because they feel they have to do what their doctor suggests or they feel they’ll let down the people around them.
Ultimately, though, you get to decide how to spend the time you have. If you choose to end aggressive therapy, you can continue complementary therapies and pain and symptom management to improve how you feel day to day.
Everyone has their own unique experience with metastatic breast cancer. People of color face challenges that White women do not and often need to advocate for their care. Ask for the care you need, and look for communities online and in person that you can connect to for support.
Show Sources
(Photo Credit: Daniel Chetroni/EyeEm/Getty Images)
SOURCES:
Dawn Gross, MD, PhD, palliative care doctor, UCSF Health.
Sarah Louden, founder and owner, Total Health Oncology.
Breastcancer.org: “Metastatic breast cancer.”
Cancer.net: “Breast cancer-metastatic.”
Breast Cancer Research Foundation: “Black Women and Breast Cancer: Why Disparities Persist And How To End Them.”
Cancer: “Update on triple-negative breast cancer disparities for the United States: A population-based study from the United States Cancer Statistics database, 2010 through 2014.”
American Cancer Society: “Cancer Facts & Figures for Hispanic/Latino People 2021-2023.”
ASCO Educational Book: “Using the New ASCO Clinical Practice Guideline for Palliative Care Concurrent With Oncology Care Using the TEAM Approach.”
American Association for Cancer Research: “Racial/Ethnic Minority Patients May Be Less Likely Than White Patients to Receive Palliative Care During Breast Cancer Treatment.”
Journal of Clinical Oncology: “Increasing Black patient participation in metastatic breast cancer clinical trials: The BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) project.”
