A guide through the cancer labyrinth

Juanita Waugh had the best of medical care when she had breast cancer in 2005, but she had little guidance for life outside of doctors’ offices. As a result, she struggled through a nightmare of side effects, wildly shifting emotions and fear of what could happen next.

No one told her what to expect from the treatments, so skin burning and discoloration from radiation and the foggy brain after chemotherapy came without warning. Nor did anyone advise her on more practical things, like how to find a wig that would make her feel more like herself after chemotherapy caused her to lose most of her hair.

“I knew nothing about breast cancer — nothing whatsoever,” said Waugh, a retired health insurance worker who lives in Oakland, California. “When I was going through the process, I felt like I was in a dark tunnel looking for the light.”

Now, Waugh is one of a group of Black women on a steering committee for a project designed to ease treatment and recovery for Black women with breast cancer and increase their odds of survival, which are significantly lower than those for white women. The project is sponsored by Stanford Medicine and the California Breast Cancer Research Program.

Black women in the United States are diagnosed with breast cancer at the same rate as white women, yet they are 40% more likely to die from the disease and twice as likely to die from it if they are older than 50, according to American Cancer Society data.

In the United States, some 36,260 Black women are expected to be diagnosed with the disease this year, resulting in about 6,800 deaths, the cancer society estimates.

The aim of the project is to build a model peer navigation program in which Black women who have experience with the disease — personally or through a family member — guide others through the labyrinth of cancer care.

They can help sort through treatment options, address practical concerns such as child care and transportation, point to available resources and offer compassion, emotional support and a listening ear.

The project’s researchers are shaping the program using information they’ve gathered from Black breast cancer survivors.

“If we can catch women when they’ve been diagnosed and enroll them in a peer navigation program, that will improve their health overall and may decrease the likelihood of poor outcomes.”

Starla Gay, co-leader of a program to help Black women navigate their journey with breast cancer

Lisa Goldman Rosas, PhD, a Stanford assistant professor of epidemiology and population health and of medicine, is co-leading the project with Starla Gay, a longtime community organizer and advocate.

They plan to establish a program in Alameda County, the Bay Area county with the largest Black population, at 11%, while learning more about how to improve the peer navigation process.

“The idea of having a peer navigator is that you have someone who is positioned to take you through all the different pathways of the disease, be it a medical pathway, educational pathway or alternative pathway, such as holistic interventions,” Gay said.

“If we can catch women when they’ve been diagnosed and enroll them in a peer navigation program, that will improve their health overall and may decrease the likelihood of poor outcomes.”

The reasons Black women are more likely than white women to die from breast cancer are complex and not well understood, said Rosas, who is the faculty director of Stanford Medicine’s Office of Community Engagement.

One theory is that genetics may be at play, with some studies suggesting that Black women may be genetically predisposed to some more aggressive breast cancers. They also are more likely to develop triple-negative breast cancer, which is particularly hard to treat, according to the Breast Cancer Research Foundation.

Adana Llanos, PhD, an epidemiologist and geneticist at Columbia University who has studied health disparities in cancer, said studies suggest social factors are also important contributors to the dire outcomes for Black women.

Like racial and ethnic minorities, generally, Black women are more likely than white women to live in low-income areas that are “food deserts” with poor dietary options and lack green space where they can exercise without fear of crime, she said. They also are less likely to have health insurance or access to medical facilities with advanced technologies for care, she said.

“I don’t think there is necessarily a genetic explanation for why Black women are more likely to die of breast cancer,” said Llanos, who serves on the project’s community advisory board. “It’s the other external things that impact us — the social determinants of health.”

She said research has also shown that Black women are more likely to suffer from chronic, lifetime stress that can negatively influence how they respond to breast cancer and how well they fare in the long run.

“That stress relationship is really strong among Black women and almost nonexistent for white women.”

Adana Llanos, PhD, an epidemiologist and geneticist at Columbia University

One study by the National Health and Nutrition Examination Survey showed that Black women had measurably higher levels of stress hormones and other biomarkers that could affect their quality of life and cancer outcomes. The study, published in 2012 in the journal Psycho-Oncology, found no comparable markers in white women.

“That stress relationship is really strong among Black women and almost nonexistent for white women,” Llanos said.

In a study published in 2020 in the journal Breast Cancer Research and Treatment, Llanos found that two years after a breast cancer diagnosis, Black women had higher levels of stress that translated into poorer quality of life measures, such as pain, lack of energy, mental distress, poor sleep and reduced ability to function, compared to their white counterparts.

She said peer navigation has been shown to make a difference for these women. For instance, a paper published in March 2022 said it’s been proven that patient navigation can lower costs, reduce hospital readmissions and emergency room visits, and improve quality of life for women with breast cancer.

The paper, published in the journal Obstetrics and Gynecology of North America by Cleveland Clinic researchers, noted that the concept of patient navigation was introduced in 1990 specifically to help Black women in Harlem Hospital who had late-stage breast cancer. Peer navigation is a form of patient navigation, with peers who have experience with a disease serving as the navigators.

Developing a peer navigation program

The new project grew out of 2018 research that aimed to engage Black women interested in heightening awareness of cancer in their community. Through the project, 16 Black women in Alameda County organized community awareness events, such as presentations at churches and sororities.

They reached more than 7,000 women during the yearlong project, which was supported by a $50,000 Innovation Award from the Stanford Cancer Institute and the Dr. Ellie Guardino Research Fund. Then, in 2019, they presented their work at the annual meeting of the American Association of Cancer Research, held in San Francisco.

Some of the women became so passionate about the cause that they chose to continue their advocacy, calling themselves Black Ladies Advocating for Cancer Care, or BLACC. Working with Rosas, the group obtained a $150,000 grant from the California Breast Cancer Research Program for the current project and formed a steering committee to design it, based on community needs.

“I strongly feel that community-based organizations hold the solutions and answers to their problems, rather than Stanford telling them, ‘This is what you should do,’” Rosas said.

There are other breast cancer peer navigation programs in the United States that are geared toward Black women, but most tend to be based in health care institutions rather than in community settings that women may find easier to access and more user-friendly. Moreover, the program being developed by the BLACC project is unique in that it’s being shaped by community members, Rosas said.

“I don’t think there is necessarily a genetic explanation for why Black women are more likely to die of breast cancer. It’s the other external things that impact us — the social determinants of health.”

Llanos, who is on the peer navigation program’s community advisory board

To gain insight into designing a program that addresses what newly diagnosed women need most, the team recruited a second group of 16 Black women — breast cancer survivors in Alameda County willing to discuss their cancer experiences.

But rather than simply interviewing them, either individually or in groups, the project members tapped into the long-standing oral tradition in Black culture of storytelling, Rosas said, asking each woman to share her own history and lived experience. The group thought this approach might help the women feel more comfortable and encourage them to open up about their cancer journeys, Rosas said.

The group developed interview prompts, formulated some general questions, conducted story-gathering sessions on Zoom and then began analyzing the results. Once the initial analysis is completed this summer, they will develop a report that they hope will form the basis for a pilot program.

Steering committee member Chiquita Tuttle, PhD, who conducted some of the Zoom sessions, said she prepared questions designed to discover what the women knew about cancer before their diagnosis, what kind of treatment options or counseling they were offered, and whether they felt there was racial bias in their encounters.

But mostly, she let the women talk freely.

The women’s stories echoed the experiences of the steering committee members. “From a cultural perspective, we don’t talk about cancer in our families, though I think that’s changing,” said Tuttle, who has two close family members who have had breast cancer.

“With the older African American women, it’s something they don’t talk about because there is this shame in having people know you have it. But it’s to their detriment, because family members can reach out and be supportive, find resources and accompany them on doctor visits. When you’re not a patient, you hear things others don’t hear and you ask questions.”

Taylor Hollis, the youngest steering committee member at 28, said Black women might be reluctant to ask questions of practitioners that could be important in their decision-making and to advocate for themselves in a health care setting.

“I think there’s a trait of just following authority and not questioning things. I think that runs in African American communities,” said Hollis, who had a close family member with breast cancer and who recently had her own breast cancer scare. “It’s not wanting to know if it’s bad or not wanting to appear noncompliant.”

“From a cultural perspective, we don’t talk about cancer in our families, though I think that’s changing.”

Chiquita Tuttle, PhD, a member of the project’s steering committee

She said a general mistrust in the Black community of the medical establishment might discourage some women from seeking early care, before the cancer progresses to a serious stage.

Moreover, Black women might be uncomfortable sharing their feelings and concerns about the disease with a white practitioner, Tuttle said.

“I think it’s a problem when you have practitioners who don’t look like them, can’t understand them and don’t encourage them to be more upfront about their personal feelings about being diagnosed,” she said. “They should specifically ask for a provider of color. But what’s most important is to have practitioners who have empathy and listen to them.”

Gay said that a recurring theme among Black women regarding health care is the feeling that doctors don’t take their concerns seriously. Three years ago, for example, she discovered a lump in her breast and had a milky discharge.

The doctor, who was not affiliated with Stanford Medicine, told her “it was probably nothing,” but Gay pressed for testing. The physician ordered a diagnostic ultrasound but never sent her the results. “No one ever followed up to let me know what was going on. What if this was something really serious?” she asked.

Several months later, she changed jobs and health plans and went for a second ultrasound and mammogram, which confirmed the presence of a mass in her breast, which clinicians are now monitoring. She felt that doctors generally minimized her concerns until she came to Stanford and finally got some answers.

Previously, doctors had told her: “‘Well, you’re young, so we’re not too worried about it.’ But I’m worried out of my mind,” she said.

In the interviews with participants in the Stanford Medicine peer navigation study, researchers found common threads, some of which surprised Rosas.

For example, she presumed the women would primarily be concerned with practical matters like transportation and child care. Instead, many participants prioritized access to nonmedical alternatives for managing the disease.

Tuttle said one of the women she spoke to opted to use herbal medicines, nutrition and other alternatives in lieu of chemotherapy to avoid the toxic effects of treatment. Another declined a second round of chemotherapy because of concerns about side effects.

“Unless you’ve walked that journey, you don’t know what somebody else is going through. And when you share your experience, it makes that person’s journey a bit lighter.”

Juanita Waugh, a member of the project’s steering committee

In general, the women expressed strong interest in approaches that promote general well-being, such as massage, gentle exercise and mindfulness practices to reduce stress. They also emphasized the importance of faith in their cancer journeys.

“It is their own spiritual belief and strength that helped pull them through — their ability to be supported by church groups that may have a health ministry where they can talk to other women, a prayer group or a consultation with their minister,” Tuttle said.

Waugh, who was an informal peer navigator for years, said that before the COVID-19 pandemic, she created a “spiritual spa” for women at her church in Hayward who had breast cancer. It included a space with meditative music, lavender oil and tea, giving the women a chance to share whatever was on their minds.

“In the faith-based community, we pray about these things,” she said. “If there is a lump, you pray about it and believe God is going to remove it. So what happens if he does not remove that lump? What is the next step? Once you get them into a comfort zone to understand that God heals us any way he wants, you can help them understand it’s OK to turn to the doctors to help you.”

She said it’s not what happens in the clinic alone but also what occurs outside the clinic that can make a difference in how a person feels and whether they’re likely to do well.

“Once you walk away from treatment, that’s where the work really begins,” said Waugh. “That’s when you need to have somebody who has empathy and deep-rooted compassion. Unless you’ve walked that journey, you don’t know what somebody else is going through. And when you share your experience, it makes that person’s journey a bit lighter.”