Yale study explores cultural challenges faced by CT breast cancer survivors who are women of color

CT Insider – Saturday, November 9, 2024
By Cris Villalonga-Vivoni

As the number of people being diagnosed with breast cancer continues to rise, national studies have long shown the widening racial and ethnic disparities.

For example, Black women are more likely than white women to present with late-stage cancer, have higher recurrence rates and higher mortality rates nationally, according to a 2023 study in the International Journal of Environmental Research and Public Health, a peer-reviewed journal published monthly. However, women of color often face many logistical, mental and cultural barriers that impact patients’ access to care.

Many of the conversations around breast cancer and patient-reported outcomes historically focus on non-Hispanic white women, said Dr. Rachel Greenup, associate professor of surgery and chief of breast surgical oncology at the Yale School of Medicine.

A new Yale study aims to highlight the experiences of breast cancer survivors by highlighting the stories of local women of color who have undergone a mastectomy for breast cancer, but didn’t undergo breast reconstruction. Their goal is to see how culture and community bonds may influence breast cancer surgery decisions and their experiences “living flat,” said Greenup, who is a senior author of the study.

There are several barriers women of color face when trying to access post-mastectomy reconstructions, Greenup said. Aspects like cost and recovery time can be common factors impacting access. There are some women who live with health conditions that can complicate reconstruction and others who simply decline to do it. However, many women of color desire breast reconstruction they are unable to receive.

Greenup said some women don’t know of the resources available, are not offered reconstruction or are never referred to meet a plastic surgeon.

The new Yale study surveyed 20 women from the New Haven area. Of them, 60 percent identified as Black, 20 percent as Asian, 10 percent as multiracial and five percent as Latina or white.

Greenup said the women surveyed how they experienced “living flat” and what views they had on their post-mastectomy body varied greatly. Topics of conversation range from cancer stigma to spirituality to the desire to find support through shared experiences.

“I don’t think losing a breast is different for women based on race or ethnicity, but I think it is impactful regardless of who you are or the color of your skin,” Greenup said. “But, I think the factors that women prioritize and the aspects of decision-making can differ based on unique cultural influences.”

Stigma was a common theme that many of the women interviewed for the study highlighted. How this manifested in the women’s lives varied. Some said there was a lot of privacy around female breasts and cancer in their culture, many of whom didn’t know their own family history of cancer as a result. Others wanted to keep their diagnosis to themselves, which can be socially isolating.

The report said that these forms of stigma could impact cancer education, cause delays in evaluation and diagnosis and impact how much they share with others.

“Many study participants said that they didn’t even know they had so much cancer in their family until they were diagnosed,” Greenup said. “So, they were never able to prepare for their personal risk of breast cancer until after they had been diagnosed.”

At the same time, many of the surveyed women wanted to connect with others with similar life experiences and cultural backgrounds for community support. They reported feeling empowered when they could share their story. Many also wanted to foster support from family, friends and community members.

When it came to body image, some survey participants felt that living flat impacted their intimate relationships, sexuality and their identity as women. Greenup said some expressed a lack of confidence and did not want to go in public, but they became accustomed to or grew to accept their new bodies over time.

Spirituality and faith played a major role in improving the quality of life after a mastectomy without reconstruction for 90 percent of the women, according to the Yale study. Faith helped participants cope with loss and eventually acceptance of their bodies, often leaning on prayers. As a result, spirituality was an important part of their decision-making regarding treatment.

Greenup said many women said they were just grateful to be alive and it felt as though the mastectomy was a sacrifice they had to make for their health.

“[Spirituality is] something that we could probably do a better job incorporating into cancer support programs,” Greenup said. “If it’s important to our patients, we need to make it important to their cancer experience in order to treat the whole person.”

Some of the older surveyed women who decided to forego reconstruction said it was an easier decision because of their stage of life. Participants also said their roles within their culture and community helped them in their overall acceptance of their post-mastectomy body.

Although some women choose to forego reconstruction, the report found that several women didn’t have post-mastectomy reconstruction as an option and were unaware that delayed reconstruction may be an option.

The Yale study noted some limitations, such as difficulty recruiting Asian, Latina, and Native women. Researchers also primarily interviewed women who were diagnosed with cancer in their early 50s, noting a need to conduct similar studies with younger women.

Despite this, the study ultimately found that “public accounts of living flat after mastectomy do not reflect the physical, psychosocial and interpersonal sequelae experienced by women of color … there remain profound opportunities to alter education, communication, and resources to improve shared breast cancer surgical decisions.”

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