All Women Are Equal. All Breast Cancers Are Not.

Tackling racial disparity in breast cancer

By Juliana Accioly

In 2008, Dana Dukes was diagnosed with Stage IV breast cancer. Having lost a lifelong friend to the disease, the African-American mother of three considered the diagnosis a death sentence. “All I could think about was how much time I had left before I died,” she says.

Reeling from the diagnosis, Dana decided that the best way to fight the disease was to seek the best possible treatment, which included multiple rounds of chemotherapy. A residential care worker for the Red Cross in Philadelphia, Dana says that during treatment, cancer was not her only challenge. She also faced many episodes of discrimination and discouragement.

“In the Black community, cancer is still a taboo,” Dana says. “If you admit to it, some people try to put you down, take your hope away. Many women told me that they would rather not know about it, but I was happy I did know.”

Breast Cancer Appears to Discriminate

The “what I don’t know won’t hurt me” mentality that Dana describes within the African-American community is disheartening, especially considering data published by the American Cancer Society (ACS), showing that breast cancer is the second most common cause of cancer death among African-American women. And while Black women are less likely than White women to get breast cancer, they’re more likely to die from it: the cancer mortality rate for African-American women is 36 percent higher than that of White women, even though their incidence rate is 10 percent lower.1

Researchers and clinicians continue to examine the role of genetics in this racial disparity. Data shows that Black women in the United States and Africa are at higher risk of developing a more aggressive form of breast cancer known as estrogen receptor–negative, or ER-negative, which strikes an average of 10 years earlier than the other variety and is more resistant to treatment. This propensity, combined with cultural, economic, and social factors that lead to poorer breast cancer outcomes in the Black community, has led to an increasing number of targeted advocacy efforts and research to encourage earlier detection among Black women, which hopefully translates into a better chance for a cure.

Advocates Encourage Screening

According to a study published in Cancer, Black women wait longer to undergo diagnostic testing after an abnormal mammogram and some do not even comply with recommendations for follow-up.2 The investigators speculated that this is the result of poor communication between patient and doctor, lack of patient trust in the physician, lack of transportation, and proximity of clinics to the patient.

African-American breast cancer survivor Karen Jackson, founder of Sisters Network® Inc., a national African-American breast cancer survivorship organization, says that when it comes to breast cancer, Black women across all economic bases often find themselves immobilized by fear. Many will walk into a healthcare facility—an experience that is foreign and intimidating—only when they think they have no other choice.

“To try to change this scenario, we are working on the psychological core of the community,” Karen says. “We are teaching women how to care about their own health and life first. More than anything, we want to replace fear with hope.”

Through 40 chapters nationwide, Sisters Network volunteers lead support groups and go door to door, offering health education brochures and information describing how to access breast cancer services and resources. The organization also encourages early detection and treatment by providing financial assistance for mammograms, co-pays, office visits, prescriptions, medical-related lodging, and transportation.

Recently, Karen says, their efforts have run up against new concerns among women in the Black community in response to the screening guidelines presented by the U.S. Preventive Services Task Force in November 2009. Karen says these guidelines, which recommend beginning screening at age 50 rather than 40, “are making it harder to motivate early detection.” Nevertheless, the organization remains committed. According to Karen, “We will continue with our message.”

Research May Lead to Change

Donna Jeffe, PhD, research associate professor in the Department of Internal Medicine (health behavior research), and her colleagues at Washington University’s Siteman Cancer Center in St. Louis, Missouri, are exploring ways to reach out to the Black community. The group launched a study in January that provides African-American breast cancer patients with recorded testimonials in which survivors describe coping mechanisms, relationships, experiences with the healthcare system, follow-up care, and quality-of-life issues.

The research team has found that providing stories of positive outcomes to newly diagnosed African-American patients is very powerful. “By exposing them to survivors of the disease, we change their perception of the importance of healthcare and encourage them to adhere to surveillance mammography, treatment, and follow-up,” says Dr. Jeffe. The researchers are also studying other communication strategies and interactive tools that can make information more readily available to patients who live in disadvantaged areas, are uneducated, or are simply reluctant to undergo treatment.

Navigating Treatment

Among those who do seek treatment, the path to recovery can be no less fraught than the path to diagnosis. Black women face unique, complex psychosocial and emotional challenges, and information is often not delivered in a way that addresses their specific needs.

Five-time breast cancer survivor Mary Smith, who leads the Sisters Network chapter in Nashville, Tennessee, says that what shocked her in the beginning of her treatment was the medical staff’s lack of attention. “Not a lot of hope was offered to me by the physicians. They were looking at my medical history, and, you see, I had lost two sisters to the disease. I felt I was not being looked at as an individual but as a medical record number.” Mary says her medical team also did not acknowledge her unique concerns as a Black woman. “I believe that medical staff should be trained to address our specific concerns.” And she says she is not alone in feeling that issues related to ethnicity are often not addressed. “‘My doctor was disrespectful to me because I am Black’ is a recurrent complaint at our [Sisters Network] meetings,” she says.

The Post-treatment Abyss

For many Black women, successfully completing treatment is not the end of the road but rather the beginning of a “new normal” that can be another significant challenge. The ACS estimates that there are 2.5 million breast cancer survivors in the United States, and for most of them life is altered permanently by their cancer experience. Survivors often don’t anticipate that at the end of treatment, instead of feeling relief and joy, they might instead feel depressed, anxious, worried, and isolated. Removed from the support that they may have had during active treatment, survivors must adjust anew to a different, post-cancer reality.

“As a patient you feel like all that you were doing up until the end of treatment protected you; but once that is over, you’re left to your own devices,” said Rhonda M. Smith, an African-American survivor in Florida. Intensifying this sense of isolation, Rhonda says, is the lingering taboo attached to cancer: “There’s still a negative stigma attached to breast cancer in the Black community; our experiences are not to be discussed.”

To closely examine the plight of African-American breast cancer patients in this post-treatment phase, researchers at the University of Miami Sylvester Comprehensive Care Center devised a five-year study, dubbed Project CARE, to explore methods for helping Black women cope, adapt, renew, and empower one another after treatment. “The post-treatment phase is often a neglected time for survivors,” says Susanne Lechner, PhD, the principal investigator of the study. “We wanted to place ourselves at the time when women are experiencing the most distress.”

The project provides participants with the information they need to get past their treatment, move on with their lives, and overcome or manage many of the lingering issues. After undergoing a screening and interview process that evaluates distress levels, quality of life, depression, and cognition, the women take part in either a breast cancer education group, which Dr. Lechner says “goes back [over] what doctors did not explain well,” or a stress management group, which offers women tools, including relaxation exercises and guided imagery, aimed at improving overall well-being. “Ultimately, the goal is to set a gold standard for programs set for breast cancer survivors in the community.”

Moving Forward

The post-treatment phase does not have to be an abyss. There is hope, there is support, and there are survivors who have successfully picked up the pieces and moved forward. Some organizations even help women regroup from the financial strain caused by the disease and its treatment.

After her treatment Dana received a grant from Living Beyond Breast Cancer, a Philadelphia-based nonprofit organization dedicated to empowering all women affected by breast cancer. Dana says that the assistance she received from the organization helped her face the unknown, readjust to life after treatment, and regroup, giving her a new perspective in life.

“Before [my diagnosis] I was always on the go, taking care of my teenagers, attending school full-time, and trying to be supportive of everybody,” Dana says. “After losing my boyfriend and realizing that not everybody was there for me, I learned what really matters to me. My priorities have been reordered. I became closer to my children and decided who is really worth spending time with.”

References

  1. Cancer Facts & Figures for African Americans 2009–2010. American Cancer Society Web site. Available at http://www.cancer.org/docroot/STT/STT_0.asp. Accessed March 17, 2010.
  2. Adams SA, Smith ER, Hardin J, Prabhu-Das I, Fulton J, Hebert JR. Racial differences in follow-up of abnormal mammography findings among economically disadvantaged women. Cancer. 2009;115(24):5788-97.

Reach Out

Sisters Network, Inc.
www.sistersnetworkinc.org
(866) 781-1808

Living Beyond Breast Cancer
www.lbbc.org
(888) 753-LBBC [5222]

Project CARE
(305) 243-8367