Receiving a breast cancer diagnosis is overwhelming and scary for anyone, but it can be particularly challenging for Black women, who often face a slew of barriers to accessible and empathetic care.
The reasons behind the racial disparities that surround the disease vary but largely come down to inequities in health care access. A larger number of Black individuals live in poverty compared to white people in the U.S., and those assigned female at birth who have lower incomes tend to also have lower breast cancer screening rates compared to those who have higher incomes, according to a 2019 study in Advances in Experimental Medicine and Biology1.
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“A lot of my Black patients don’t even have a primary care doctor, and they’re the ones who will typically refer you to breast cancer screenings,” Bridget Oppong, M.D., F.A.C.S., a surgical oncologist specializing in breast cancer at The Ohio State University Comprehensive Cancer Center, tells SELF. Many Black folks also don’t have access to doctors who are up-to-date on their family health history, and “they’re the ones who give you the nudge to get a mammogram,” says Dr. Oppong, who is currently working on a study with Black survivors of breast cancer.
Not getting mammograms on the recommended schedule can delay an early diagnosis, as so often happens with many Black people. A 2015 study in the Journal of Women’s Health2 found that Black women experience a two-month delay (or longer) in getting a breast cancer diagnosis and surgical treatment compared to white women, for reasons like lack of insurance and not being able to take time off from work. Delaying a breast cancer diagnosis by more than 90 days is dangerous because it’s associated with having a more advanced disease that may be harder to treat. In fact, Black women are 41% more likely to die from breast cancer than white women, according to the Centers for Disease Control and Prevention.
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That’s why, unfortunately, Black people often need to advocate for themselves to get the care they deserve. Of course, it shouldn’t be up to individual people within marginalized communities to fight racism in medicine—the health care community has a responsibility to enact serious reform so people of all identities receive equal treatment. But in the meantime, although there are many systemic issues at play, experts say there may be a few things in your personal control. Here’s what you can do to try to ensure you’re getting the best care possible after a breast cancer diagnosis.
1. Reach out to family members, friends, and peers for support.
Whether you’re bracing yourself to hear difficult news about your diagnosis or feel anxious about conveying your symptoms to your doctor, it can help to bring a person you trust to your appointments if you’re comfortable with the idea. “I always tell people to not do things alone,” Erika Stallings, co-chair of the Young Leadership Council and a patient advocate at the Basser Center at Penn Medicine, tells SELF. “It’s really important to take a friend or family member with you to these appointments because there’s so much information being thrown at you.”
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Share a list of questions or issues you’d like to address with your doctor with your support buddy, Stallings says. (The American Cancer Society offers a list of important questions to consider for every stage of your breast cancer journey.) When you’re both on the same page about what type of information you want to get from your doctor at that appointment, they can step in if you’re having trouble getting the details you need.
A lot of what you’ll hear from your doctor may even “go in one ear and out the other,” Camilita Rahat, patient care director for the Breast Practice & Infusion Center at New York Presbyterian/Weill Cornell David H. Koch Center, tells SELF. Because you may be feeling intense anxiety, you may not necessarily process everything your doctor says in the moment, so having another person there to act as your sounding board can help you make sense of things afterward.
With that said, not everyone has family, friends, or a partner to lean on—and some studies show that this can affect whether Black people get and finish the breast cancer treatment they need. Treatment, depending on the type of cancer, often takes up to a year, says Dr. Oppong. “You may need chemotherapy, radiation, and/or surgery, so it can be a long time.” With hormone therapy, which is often used longer term to prevent a cancer recurrence, you might need to take medication for years.
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Treatment is already tough—but going through it alone is even tougher. You might feel hesitant about reaching out to strangers, but many people say that support groups, whether in-person or virtually, gave them strength and helped them feel less alone. Stallings recommends finding others who understand what you’re going through using apps and platforms like The Breasties and For the Breast of Us. The American Cancer Society and BreastCancer.org also offer support groups. Transgender and nonbinary Black folks may feel more comfortable finding support using resources at the NIH Sexual & Gender Minority Research Office, National LGBT Cancer Network, and CancerCare LGBTQ+.
2. Research your diagnosis.
As helpful as it would be to have an expert navigate every aspect of your breast cancer journey, the reality is that you will likely need to do some research so you can make decisions that you personally feel comfortable with throughout your treatment process.
Understanding your own breast cancer diagnosis is a good starting place. There are five stages of breast cancer, which represent how far the cancer has progressed to other areas of the body, according to the Mayo Clinic. Review your pathology report closely, which includes information on whether your cancer is noninvasive (meaning the cancer is contained within your milk ducts) or invasive (meaning your breast cancer has spread and affects more tissue), as well as the size and appearance of your cancer. Knowing the type of breast cancer you are dealing with, as well as the stage it’s in, can help you understand why your doctor recommends a particular treatment option.
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For example, they might recommend having a mastectomy to remove your entire breast, which can be really daunting. But if you have full clarity on why that surgery is necessary—say, you have cancer in multiple parts of your breast that would be difficult to eradicate with other treatments—knowing that you’re doing the best thing to take care of your health could make the choice easier.
Remember, come to each appointment with a list of questions so you can get all the information you need. The American Cancer Society also has helpful information on how to interpret studies on new cancer treatments and regularly publishes updates on the latest cancer research, so you can stay on top of new findings and discuss them with your care team.
3. Don’t be afraid to find a new doctor if you don’t feel heard.
Research indicates that Black people often feel like medical professionals doubt their experiences or dismiss their concerns, which may be rooted in racial bias among other factors. When you’re dealing with something as serious as a breast cancer diagnosis, you understandably want a physician who is empathetic and responsive to your needs, so all of your worries are addressed and your path to treatment is clear.
Of course, finding a doctor you enjoy working with isn’t always an easy process. It can involve a lot of time, effort, money, and may even depend on where you live. But if you have the opportunity to consider multiple experts before you commit to one, you should try to do that.
“Finding a doctor who is willing to listen to you and explain to you what dense breasts are, for example, is really important,” says Stallings. (It’s more difficult for mammograms to detect tumors in people with dense breasts, according to the National Cancer Institute. While dense breasts can be perfectly normal, they’re also a risk factor for breast cancer—and Black women tend to have denser breasts than white women3.)
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Stallings underwent genetic testing at age 29 and discovered she inherited the BRCA2 mutation, a harmful genetic variant that increases breast cancer risk. She decided to get a preventative double mastectomy (surgery to remove both breasts) to reduce her risk of breast cancer, but before she got the surgery, she interviewed multiple doctors until she was confident in her care team.
“Don’t be afraid to fire a doctor and be willing to interview a lot of people to get what you’re looking for, even if that’s just feeling comfortable,” says Stallings, who participated in the Breast Cancer Research Fund’s Research Is the Reason storytelling initiative to give voice to young Black women who might need to consider the same difficult decision she did. “One of the things I love about my care team is that I felt really comfortable with them. They were super responsive to my questions. I also sought out people with empathy who saw me as a partner in my care process versus just dictating to me what I needed.”
4. Get a second professional opinion if you can.
Even if you’re happy with your doctor, Dr. Oppong recommends seeking a second opinion (or even a third!) without delaying your treatment, so you can explore how other experts would approach your care. Then, you can discuss the various treatments with the doctor you plan on seeing for your care and come up with a plan that you feel is the best for you.
If you have limited local access to health care in your area, consider using telehealth services. “If you’re in rural America, where Black women have an even higher mortality rate, you may have only one option for a doctor and have limited resources, so it’s really important to always ask questions,” Dr. Oppong says. To get a second opinion virtually, you can start with the American Society of Clinical Oncology’s database of oncologists, which allows you to filter your state and contact a doctor to see if they offer virtual visits. Or, you can try searching in Health in Her Hue, an app that connects people of color with culturally competent doctors.
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Dr. Oppong notes that Black people can especially benefit from telehealth services because studies show that they’re more likely to face logistical barriers, such as not being able to take time off work, which can make in-person visits challenging. “In my breast surgical practice, wound checks, for example, can be done very easily virtually, in addition to a pathology or imaging results review,” Dr. Oppong says. “Many patient questions can also be easily addressed, and oftentimes being outside of the medical facility allows the patient to be comfortable to communicate with me on some personal matters.” (Of course, some people may not have high-speed internet access and may need to plan for their appointments at a friend’s or family member’s house if they choose to go this route.)
Some hospitals offer virtual second opinions too. These services are usually not covered by insurance companies, but if you’re able to afford it, the New York Presbyterian/Weill Cornell Medical Center offers digital second opinions within five business days of your request. The Dana-Farber Cancer Institute and the Memorial Sloan Kettering Cancer Center also provide second opinion services to evaluate your breast cancer results.
5. Ask what kind of patient services your hospital or treatment center provides.
Your doctor isn’t the only expert you can tap for advice on finding treatment and support. If your hospital has a patient services program, you’ll have access to nurses, program administrators, or patient navigators who can help you find anything from available clinical trials to mental health support groups. If you’re receiving care at a smaller institution and aren’t sure if this type of support will be available to you, inquire about patient services when you make your first appointment with your doctor.
For example, New York Presbyterian/Weill Cornell has a staff of nurses dedicated to helping you figure out your next steps after being diagnosed with breast cancer, says Rahat.
“Our nurse navigator connects with our patients on each and every visit that they are here, from diagnosis through surgery, through treatment, and even after treatment,” Rahat says. “So typically, patients will be coming in every two to three weeks for treatment. In that interim, life still goes on. They still have needs, they still have questions, so a nurse navigator connects with them.”
Having another expert to lean on can also be helpful if you have questions but can’t reach your doctor as soon as you would like. “Our nurse navigator is here whenever a patient needs them. The hospital provides employees with work phones and patients have that number,” Rahat explains. “They can call and say, ‘Hey, I’m in pain and not feeling well. Is this something that I should be experiencing?’ We prioritize calls like that and pass that message on to their provider.”
If you need assistance with English translation during your doctor’s appointments, patient services can generally help you get that too. “We are required to have translators on video or in-person during visits, and if it’s a phone call, we have a two-way line,” Dr. Oppong says. “As physicians, we ask patients if they prefer to use a translator instead of a family member because a lot of the time it’s personal stuff that they may not necessarily be comfortable sharing with another family member. But language barriers shouldn’t prohibit anyone from getting cancer care.”
6. Ask about financial assistance programs.
Another major barrier for some Black women with breast cancer is the financial cost, Dr. Oppong says. In addition to being emotionally and physically taxing, treatment can be very expensive, to say the least.
However, many hospitals have financial counselors who can research grants if you aren’t able to afford certain medications or tests. Generally, you can connect with these counselors through the patient services team at your hospital or treatment center.
“Some drug companies also have what we call a patient assistance program,” Rahat says. “So if your doctor recommends a certain treatment that isn’t covered by your insurance, our financial counselor can work with the drug company to explain what the situation is and try to get the medication without any costs.”
You may also want to research programs outside of your hospital, such as Unite for Her, CancerCare Co-Payment Assistance Foundation, the Breast Cancer Assistance Fund, the Pink Fund, and the Susan G. Komen treatment assistance program. These organizations offer grants that you can apply for to help cover the costs of breast cancer care.
If you’re receiving treatment in another city or state, The American Cancer Society’s Hope Lodge program may be able to help with housing. The Mercy Medical Angels also offer transportation to people who need to travel for their treatment.
7. Try to seek care at hospitals connected to research centers and clinical trials if possible.
Stallings recommends looking for doctors affiliated with universities, hospitals, or research centers if you can, because these facilities are generally up-to-date on the latest treatments in the clinical trials phase. For example, at the Breast Practice & Infusion Center at New York Presbyterian/Weill Cornell, doctors lead clinical trials that investigate the efficacy of new treatments and work with a research nurse who pulls all the necessary data that may be beneficial for certain patients, Rahat says.
It’s important to note that even if you have health insurance, only some of the clinical study costs may be covered. You may also need to spend a lot of time going to the hospital for visits when you take part in clinical trials, so participating in these trials isn’t always the best option for everyone.
However, participating in a research study can be a game changer if you find one that’s a good fit for you. “With our program, we have research nurses whose focus is on helping women of color with more aggressive forms of breast cancer get access to drugs that are not going to be available for another five to seven years on the market,” Rahat says.
Dr. Oppong says there may not always be a study that you qualify for, but it never hurts to ask and explore your options. You can research which clinical trials for breast cancer treatment are currently under way and information on how to participate by visiting the National Cancer Institute, the National Institutes of Health, Antidote, and Karen’s Club, which specifically helps people of color get access to clinical trials. (This is crucial, as Black people don’t participate in clinical trials as often as white individuals for many reasons beyond their control, which furthers inequities in breast cancer treatment.) FORCE, a cancer education organization, also has step-by-step information on how to search for studies and contact a study team on its website.
Receiving a breast cancer diagnosis isn’t easy, especially for Black people. But advocating for your health can help ensure your voice is heard throughout your journey—and give you the strength and power you need to keep going.
Advances in Experimental Medicine and Biology, Health and Racial Disparity in Breast Cancer
2. Journal of Women’s Health, Diagnosis and Surgical Delays in African American and White Women with Early-Stage Breast Cancer
3. Journal of the National Cancer Institute, Study Finds Black Women Have Denser Breast Tissue Than White Women
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