Why Are So Many Minority Patients Declining Breast Cancer Treatment?

Fact checked by Nick BlackmerFact checked by Nick Blackmer

Key Takeaways

• A recent study showed that Black, Asian, and Native patients are more likely to decline or not complete treatment for breast cancer.

• Experts say that medical mistrust is only one part of the problem. Financial toxicity is another factor, and concern about family roles may contribute to waiting on treatment.

• Patient navigators can help patients navigate treatment and access resources.

For many patients, a breast cancer diagnosis sets off a flurry of consultation and conversations about treatment. This once-deadly diagnosis now has a five-year survival rate of 99% with proper treatment, according to the American Cancer Society.

But that encouraging number isn’t the reality for patients who say no to treatment—most of whom are minorities, according to a recent study. The study, which surveyed nearly 3 million patients in the National Cancer Database from 2004 to 2020, examined four treatment methods offered for cancer treatment: chemotherapy, surgery, radiotherapy, and hormone therapy.

The study revealed that Black, Native, and Asian American patients were more likely than White patients to decline treatment—especially chemotherapy. Hispanic patients were less likely to decline treatment of any kind. The study also showed that Black patients who declined chemo had significantly higher mortality rates than White patients who did.

If we have so many effective treatments for breast cancer, why are so many patients passing on them? Monique Gary, DO, the medical director of the cancer program at Grand View Health, told Verywell that there are two main reasons Black patients—women, in particular—turn down care: medical mistrust and socioeconomic factors.

“There has been a lot of medical mistrust, particularly around aggressive therapies and toxic therapies like chemotherapy,” said Gary. “We still have people who feel like they have to choose between this nebulous mythical holistic route that’s poorly defined versus really well-defined pathways to proven medical care.”

Related: Minority-Led Health Care Company Fills the Gaps in Senior Health Care

The Burden of Cost

In Gary’s experience, financial toxicity plays a major role when patients say no to aggressive cancer treatments like chemotherapy.

“It’s not just the cost of treatment, but the travel to get to the treatment and the loss of associated wages,” said Gary. “The toll that cancer treatment takes on the finances of both the patient and their support system is important.”

Minority patients are often at a disadvantage from the moment they’re diagnosed (or even before, if you factor in misdiagnosis and delayed diagnoses). For example, Black women are more likely to get aggressive forms of cancer, including triple-negative breast cancer. The most successful treatment is a combination of surgery and chemotherapy, but patients who delay starting or don’t complete treatment have worse outcomes, according to Gary.

With cost being such a critical factor, Gary said that financial navigators are integral to turning the tide in the rates of patients declining treatment. At Grand View Health, Gary’s cancer program works with a financial navigator who guides patients through what to expect, options for care, and ways to ease the financial burden so they can get through treatment from start to finish.

Related: Breast Cancer: What Black Women Need to Know

Worry About Being a Burden on Family

In the recent study, women of Asian descent were less likely to start breast cancer treatment quickly or even to accept treatment at all. Sora Park Tanjasiri, MPH, DrPH, a professor and associate director of cancer health disparities at the University of California Irvine Public Health, told Verywell that the interruption of family roles can be a significant factor in Asian patients’ decisions about care.

“We see a lot of worry about how the cancer and then the treatment will compromise their abilities to fill their roles in their families,” said Tanjasiri. “Asian Americans are more likely to agree to surgery, but there are a lot of concerns about the side effects of chemotherapy. They worry about fatigue, loss of time, and the impact it has on their role as a wife or mother.”

Tanjasiri said that the concern about burdening loved ones is also part of the picture. For example, Asian women may hide a cancer diagnosis from their children to protect them from worry. But a culture of secrecy can negatively affect outcomes for patients and their families.

“In the model of an informed patient, all the details are talked about,” said Tanjasiri. “But for family members that are involved, they often feel that they want to support their wife, sister, or mother, but the patient doesn’t want to tell them about anything.”

After interviewing newly diagnosed Vietnamese cancer patients for her work with the Chao Family Comprehensive Cancer Center, Tanjasiri said most patients needed to give themselves permission to ask for support.

“These women are used to being the ones that provide and support, so being the one in that role of patient is hard for them,” said Tanjasiri. “It goes to the core of their identity.” But Tanjasiri added that once patients were willing to take on the role of patient and reaching out, they felt better about accepting support.

Socioeconomic factors are involved, too. Tanjasiri said that even with insurance coverage, patients of all racial and ethnic backgrounds often struggle to pay for the copays, deductibles, and prescriptions—which can be years-long expenses in cancer care.

Related: The Role of Stress in Minority Health

How to Make Positive Changes for Patients

Tanjasiri and Gary agree with the study and believe that to see improvements in minority breast cancer outcomes, the focus of care has to change, and equitable solutions for patients in lower socioeconomic conditions must be created.

Having support in place from other providers is another important component.

“There’s a big movement in oncology to connect patients with social workers immediately so they can get access to the resources they need,” said Tanjasiri.

For the financial piece, Tanjasiri cited the American Cancer Society’s lodging and transportation services and compassionate care dollars to cover out-of-pocket expenses. Social workers can also help with legal support that patients may need to file for the Family and Medical Leave Act (FMLA) to retain their employment and, by extension, their insurance.

Related: Ask an Expert: What Happens If I Can’t Work Because of Cancer?

Tanjasiri said that a patient navigator is another invaluable tool. These individuals can coordinate appointments within care teams, as cancer patients usually have several providers working together, such as an oncologist, surgeon, and radiologist. Cancer navigators can also make sure patients understand their treatment options when there are language barriers—a cultural factor that also affects minority patients’ health outcomes.

To make all these changes happen, Tanjasiri said that assessing a patient’s needs at the point of diagnosis can be a solid start.

“We need to know going into it what the challenges will be in successfully completing treatment,” she said. “We ask about insurance. Who’s making the income and how can they support? Who’s driving, and how far away are you? Do you need lodging?”

It might seem simple, but providers won’t be able to facilitate access to potentially life-saving treatments and support if they don’t start by just asking patients what they want and need.

What This Means for You

Cancer treatment can be a maze of options, but getting started with a treatment plan as soon as possible increases the chances of a positive outcome. As you’re working with your cancer care providers, ask for a patient navigator—especially if you don’t have support at home.

Read Next: Preventing Breast Cancer in Black Women

Read the original article on Verywell Health.