Looking for answers on gap in breast cancer survivors

The disparity is as troubling as it is profound.

Eight percent of Caucasian women die within five years of being diagnosed with breast cancer. Among African American women, the toll is 21 percent.

But what about women who do survive?

Recently, researchers at Villanova University and the Sidney Kimmel Cancer Center at Thomas Jefferson University published a study looking at issues affecting African American women after treatment for breast cancer.

The study was conducted by Andrea Barsevick, a professor in medical oncology at Jefferson; Amy Leader, an assistant professor of medical oncology at Jefferson; and Patricia K. Bradley, an associate professor in the College of Nursing at Villanova University.

Bradley recently spoke with us about the effort.

What are issues affecting African American women after treatment for breast cancer?

We conducted our study because we wondered whether the survival disparities among African American women might also lead to a large burden of quality-of-life problems after breast cancer treatment. We held eight focus group sessions involving a total of 60 African American survivors to learn what they considered to be their biggest problems after being diagnosed and treated. Later, we sent surveys to 1,000 African American survivors. We were able to document a multitude of survivorship problems from the 297 survivors who completed the survey.

In addition to emotional and physical problems, we found two problem areas unique to African American breast cancer survivors. These were lack of informational resources and sexuality concerns, such as fertility issues for younger women. Survivors described health providers as not being forthcoming with information, and perceived the information they received as inferior, and sometimes conveyed in an insensitive manner. We also found that younger women, those with additional medical conditions, and those with mistrust for the medical system had a higher risk for more severe posttreatment problems.

Are there other disparities between African American and Caucasian women with breast cancer?

Younger, premenopausal women are often diagnosed with a more aggressive form of breast cancer known as triple negative. Overall, there are more African American women who are younger and premenopausal who are being diagnosed. An important message for survivors is that breast cancer is different for everyone, and it's not the woman's fault if she gets the aggressive kind. Sometimes, the implications from the scientific literature is that African American women are somehow inferior because they have this more aggressive breast cancer. As researchers, we're trying to reframe the discussion. Different doesn't mean less than or inferior.

How big an issue is medical mistrust for African American women?

Our study participants talked about feeling that they were treated differently in medical situations. They gave examples of overhearing someone in the waiting room, who happened to be white, discussing information about management of their disease that the participant had not received, leading to a sense of mistrust about the information they were given. Some described feeling uncertain about why the provider did not discuss information such as triple negative breast cancer with them. Participants noted that when you don't know the reason for the difference in information, you may think that it's due to racism or discrimination, similar to previous discrimination experiences.

What can be done?

We're working on helping providers find better ways of connecting to African American survivors and to decrease any mistrust. One suggestion is for providers to ask women whether they have questions specific to their care and culture. We are encouraging women to ask their providers about potential race or ethnic group differences that they should know. Our research team's next step is to develop programs that provide high-quality information in a way that is relevant to African American women. We want to design digitally printed materials, with audio and images that resonate with African American women. We found that although the information may not be different from other groups, the way it's delivered is important to African American survivors.

We know that access to care involves more than transportation. It's about having a provider you can trust. Yes, maybe all the provider has is 15 minutes to spend with you, but within that 15 minutes, they somehow are able to help you feel like you are more than a diagnosis, you are a person. The provider hugs you with words, if you will.

A major resource among African American women is the ability to express their spirituality. The belief that God made the treatment, the caring provider and all of the resources available to the survivor, to allow her to live is a prevalent one. Most of the women that I've spoken to say that the gender and race of the provider doesn't matter. It's what's in their heart, in terms of caring about the patient as a person and acknowledging the faith of the woman and her need to feel connected to God.

Any advice for African American women with breast cancer?

Most survivors will say that you must advocate for yourself: Ask questions, and if you don't get an answer, ask another professional. You might need a second opinion or you might need to search for a new medical home. Joining a support network such as a survivors' group, or giving back through volunteering has been helpful to survivors.

Don't give up. Sometimes, when people feel mistreated, they just stop coming. All the survivors that I know who are doing well are people who say, don't give up. Stay connected.

sandybauers10@gmail.com