Special Report: Support groups improve quality of life for black breast cancer patients
April 25, 2012
by Heather Ronaldson
Bonnie Anderson says surviving breast cancer is about having hope. The now 60-year-old Milwaukee native first discovered the cancerous lump in 1993 in her right breast. She was terrified and thought she was going to die.
Cynthia Hooker, 49, who works at Northwestern Mutual, found what she thought was a cyst in her right breast in 2007. It turned out to be two cancerous lumps, even though her last breast exam was just three months earlier.
Both cancer survivors, Anderson and Hooker say the social, emotional and spiritual support that they received from peer mentors and support groups contributed to their recovery.
Anderson attended a monthly African American support group at Aurora Sinai Medical Center, and then became one of the first mentors through After Breast Cancer Diagnosis (ABCD), a one-to-one breast cancer support service that made 221 formal matches last year, and served more than 4,000 people. Hooker attended Sisters Network, Inc., a national African American breast cancer survivorship organization. She then began participating in ABCD.
According to 2007 research on health-related quality of life among women of color, “ethnic minority cancer survivors report greater needs for information, emotional support, practical assistance, and spiritual support in their cancer care.” The report also noted there is growing evidence minority and underserved breast cancer survivors may be at greater risk for diminished quality of life than Caucasian cancer survivors.
Between 2004 and 2008, approximately 116 African American women were newly diagnosed with breast cancer every year, according to the National Cancer Institute State Cancer Profile.
Although white women have a higher incidence of breast cancer in Milwaukee County, black women suffer a higher mortality rate from the disease than any other racial group. According to the state profile, roughly 30 black women per 100,000 in Milwaukee County died from the disease each year between 2004 and 2008, compared to about 20 white women. Mortality data is not available for Latino women.
Since 1990, mortality rates for all races and ethnicities in Wisconsin have decreased, according to the National Cancer Institute, but breast health educators and advocates are still fighting to reduce the higher mortality rate for African Americans. They emphasize that education and peer support are important aspects of women’s treatment.
Peer support programs typically provide information and education, coping skills, acceptance, a sense of normalcy and diminished social isolation, according to a 2007 Institute of Medicine report about patients’ psychosocial needs.
Nevertheless, services are underutilized because many women do not know they exist, according to Ginny Finn, ABCD executive director. There is no data to show how many women diagnosed with breast cancer are referred to support services, she added. The cancer support community is hoping to develop a tracking system to ensure that all diagnosed women get a referral and can make an informed decision about whether they want to participate.
“The utilization of people who ask for help mirrors what goes on in the greater breast cancer community,” Finn said. She estimates about 75 percent of women using ABCD matching service are Caucasian, because they have the highest incidence rate. African Americans are the next highest racial group to receive support service. There are very few Latino participants, Finn said.
Anderson noted that in the African American community women often are the heads of households, and when faced with a breast cancer diagnosis, they are prone to refusing treatment or peer support because they are focused on taking care of the kids and making sure rent is paid.
“She doesn’t have anyone to give her a hug or a pat on the back and say ‘You’re going to be OK,’” Anderson said. “She can’t sink down and be worn out—she has to keep moving.”
Community organizations such as Partners in Pursuit of the Promise, Courage to Dare Foundation, Kohl’s Conversations for the Cure and the Wisconsin Well Women Program educate women in underserved neighborhoods about treatment options in southeastern Wisconsin while building relationships and providing peer support.
“Families give you emotional support, but in our support group, there are so many African American women who have family, but the family’s knowledge is so poor. I think that emotionally they come to the support group to get that hug and to get that support,” said Anderson, a board member at ABCD.
Support worker Hameda Petty of Milwaukee Health Services Inc. (MHSI) describes her job as a bridge between patient and provider. She said her work is vital to ensure women are adequately served from diagnosis to completing their full course of treatment.
“The mental health of our patients goes along with the physical,” Petty said. Depending on what is going on with the patient, emotional and mental stressors can also interfere with their quality of life.
According to the Centers for Disease Control and Prevention, “Although health is one of the important domains of overall quality of life, there are other domains as well—for instance, jobs, housing, schools, the neighborhood. Aspects of culture, values, and spirituality are also key aspects of overall quality of life.” One of the centers’ Healthy People 2020 health objectives is to increase the mental and physical health-related quality of life for cancer survivors.
Psychological and social stressors such as depression, limited financial resources and inadequate social support are associated with increased morbidity (rate of incidence), mortality and decreased function, the Institute of Medicine reported.
“If someone is afraid they are going to die, they are not usually focused on quality of life and wellness,” said Corliss Quinn, a mind-body therapist specializing in oncology care at Cancer Treatment Centers of America in Zion, Ill. Quinn works one-on-one with patients to provide emotional support and help manage stress.
Quinn teaches patients breathing exercises and other holistic therapy strategies, including laughing.
“If we can address the emotional pain we’ll see that trickle down into how they create their lives,” Quinn said.
Hooker battled financial, mental and physical stress during her two breast cancer diagnoses. After her first diagnosis in 2007, she developed congestive heart failure, which postponed her chemotherapy and radiation.
“I think a part of me was kind of disconnected because it just seemed kind of unreal. You have a lot of emotions and are trying to figure out the best course of action,” Hooker said. “Your mind just never stops.”
A year and a half later, Hooker was diagnosed with breast cancer again in her right breast. At that point, she decided to have a double mastectomy.
“Claudia [Henley, her ABCD mentor] answered a lot of questions I had when entering this experience,” Hooker said. “There’s so much information on the Internet that when I was looking at it, it felt like overload. So by having her there to guide me, it helped me to take things in stages rather than just being so overwhelmed.”
Hooker said she and Henley are like sisters now. Henley also chairs Cynthia’s Breast Cancer Giving Circle, Inc., a grant fund to help relieve mental stress and financial hardship for those in a situation such as Hooker’s in 2007 and 2009.
“If women can’t pay their bills, if they can’t pay their rent, if they can’t get to the clinic, they stop [treatment]. That also impacts their mortality. And that’s exactly what we’re seeing, unfortunately,” said Sandra Millon-Underwood, professor in the College of Nursing at the University of Wisconsin-Milwaukee.
Underwood works with Partners in Pursuit of the Promise, among other support networks, to help underserved women complete their full course of treatment and make informed decisions regarding overall health.
“I think when you connect with groups like ABCD and breast cancer support groups, that’s what comes out of (it)—learning that you can live. You can’t pick your day; nobody can do that anyway, but I think if you have hope, you’re going to do a lot better than you would if you went home, and got on the couch and cried the rest of your life,” Anderson said.
But not every woman is receptive. Anderson said Dr. Alonso Walker, professor of surgery at Froedert Hospital, called her and Millon-Underwood to speak with a woman who refused chemotherapy, fearing unpaid rent and unattended children. Despite their encouragement, she still refused treatment. The woman soon died.
For some, the barrier to pursuing treatment and peer support can be cultural. Juliet Aguwa founded the nonprofit Courage to Dare two years ago to educate and support West African women like her about the importance of breast health and cancer treatment.
“In Africa, breast cancer is a hushed conversation,” she said. It is considered a taboo, or curse upon the woman diagnosed. West Africans are also extremely private, she said, and do not share aspects of their personal life. As a breast cancer survivor, Aguwa took a risk in her community to share her journey to recovery. Courage to Dare connects West Africans overseas and in Milwaukee to learn from the experiences of Aguwa and others.
Olive Demdy traveled from West Africa to Milwaukee for chemotherapy after her mastectomy. Demdy will be returning to Sierra Leone where she wants to help other West Africans become more comfortable talking about breast cancer.
“Seeing Juliet made me believe there was hope. It inspired me,” Demdy said.
Added Anderson, “It’s all an attitude adjustment, that thing called hope. It lightens a big load. When you walk without hope, you will not survive.”