"Look on Me"

When the doctor goes in to the patient’s room to deliver the diagnosis, Juanita Clarke is there.

This morning at the AVON Comprehensive Breast Center at Grady Memorial Hospital, the woman they talk with is a single mother of three, and her diagnosis is early-stage breast cancer. “What is going to happen to me? What am I going to do with them?” the mom asks.

Juanita Clarke

Juanita Clarke

Clarke, a breast cancer survivor who was also raising a daughter on her own when she was diagnosed decades ago, has an answer. “Look on me,” she says. “You’re going to do what I did. You’re going to make it.”

Clarke volunteers as a clinic patient navigator in the Avon Foundation Community Education and Outreach Initiative (CEOI). A collaboration between the Avon Foundation, Grady Health System, and Emory’s Winship Cancer Institute and Rollins School of Public Health (RSPH), the effort supports patients in the breast cancer clinic from diagnosis through treatment. It also includes educational outreach to teach underserved, underinsured, and uninsured minority communities about breast health.

The clinic patient navigators—known as the “pink ladies” for the smocks they wear—provide information, emotional support, and referrals for newly diagnosed women. “I encourage my patients,” says Clarke, “and let them know what to expect. They can call me after they get home if they have more questions.”

But more than answering questions, the pink ladies—all breast cancer survivors themselves—serve as proof that a cancer diagnosis need not be a death sentence, says Clarke, age 75. She was only 42 when she was diagnosed with breast cancer and underwent 28 treatments of radiation in days before chemotherapy. “I had to live for my child and get her grown,” she says. (Today her daughter is a mother herself and works in Emory’s radiology department.)

Ileana Barrios

Ileana Barrios

The program also matches individual navigators with patients to provide one-on-one follow-up throughout their care. The individual navigators encourage women to attend appointments, take their medications, and find all the resources to give them the best chance of survival.

Ileana Barrios, who was treated for breast cancer at Grady in 2007, now serves as an individual patient navigator, working with Spanish-speaking patients. The language barrier is just one of the problems that these women face. Many are from rural Mexico with little education and few financial resources, and half are undocumented workers, says Barrios.

A Spanish teacher at a school in Marietta, Ga., Barrios does her comforting and follow-up by phone. When she calls, she knows what it is like to be in the women’s shoes. “At that moment, you feel like, oh my God. What am I going to do? My children. My husband. I don’t want to die. But I call and say it happened to me too. Let’s talk.”

The “pink ladies” volunteer in a community program that seeks to improve the odds for newly diagnosed women. 

Cecelia Muhammad is a self-described talker who also is passionate about breast health education. A community patient navigator in the Avon program and member of Toastmasters, Muhammad says she can speak on the spur of the moment to anyone about anything. The thing she most likes to talk about? Preventing breast cancer.

A retired registered nurse, Muhammad, 70, makes presentations on breast health at churches, community events, and in homes. She comes with a table covered with a pink tablecloth—“I want it to look pretty,” she says—and she sets out literature on breast cancer prevention and a model that she uses to demonstrate how to correctly do a self breast exam. She asks if women have had a mammogram and the last time they have done a self exam for cancer.

Cecelia Muhammad

Cecelia Muhammad

“I’m concerned about the increase in the incidence of breast cancer in younger women,” Muhammad says. “The challenge with them is that they don’t think anything is going to happen to them. With older women, who have been taught not to touch their bodies, the challenge is getting them to do their own exam.”

When appropriate, Muhammad refers women to the Breast Test and More program—a service for underserved women that offers mammograms, pap smears, and clinical breast exams at little or no charge.

Measuring outcomes is important, says Tamara Mason, who coordinates the navigator program, and several studies indicate that the program is working.

An early assessment led by Emory surgeon Sheryl Gabram, who directs the AVON Comprehensive Breast Center, followed 487 patients who were diagnosed and treated from 2001 to 2004. That research, published by the American Cancer Society in 2008, showed a decline in stage 4 invasive breast cancers in participants in the Avon community program from 16.8% to 9.4%. Current research is under way to determine whether specific patients presented earlier as a result of specific community outreach initiatives and to measure the effects of the outreach interventions on potential stage migration.

In July 2010, The Annals of Surgical Oncology published a study led by Gabram’s colleague, Monica Rizzo, which showed that with interventions, adherence to treatment markedly increased in a group of breast cancer patients where the no-show and non-completion of therapy rate traditionally is high. These interventions included training patient navigators and hiring a nurse practitioner in medical oncology.

In addition, a qualitative study led by Emory alumna Dara Schlueter, published in the Journal of Cancer Education, has shown that women who work with the patient navigators feel more confident in talking to their doctors, are better informed about what questions to ask, appreciate the availability of someone to reach out to no matter the time of day or night, and feel more emotional support than the women who forego participating in the program.

And research published by the program and RSPH staff in Health Promotion Practice (April 2011) shows that 22 community patient navigators hosted 207 breast health events with 9,601 attendees in a 15-month period. Of those participants, 304 women indicated an interest in mammography, and 21% went on to receive mammograms at collaborating facilities. Participants who reported breast symptoms were twice as likely to get a mammogram as those who did not report symptoms.

Regardless of numbers, for Muhammad, the program is about saving lives. “My biggest joy is getting feedback from someone I’ve helped,” she says. “They call me up and say ‘thank you.’ I’m getting ready to boohoo just thinking about it.”

And all of the 12 women that Barrios has assisted in the past two years have survived their cancer so far. “It is great to know that our work has helped our patients,” she says. “It makes me happy.” —Rhonda Mullen

   
   
 
 

Web Connection: To learn more about breast cancer treatments at Emory, call 404-778-7777 or visit emoryhealthcare.org/connecting/healthconnection.html.

 
         


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