The Community Impact of Breast Cancer

California is a blend of diverse communities offering a unique opportunity to investigate disparities and the unequal burden of breast cancer. Critical questions to be addressed include:

The CBCRP has been supporting community-based collaborations for 10 years, and we offer pre-application workshops and technical assistance to facilitate new partnerships and successful grant applications. We are encouraged that many CRC grants focus on underserved populations to address the underlying disparities. We feel that an “evidence-based” community project has great potential to lead to a successful intervention.

In addition to the CRC awards, the CBCRP supports the Community Impact priority issue with innovative IDEA grants and career development awards.

Three research topics are represented in this section:

Research Conclusions

African American Women and Breast Cancer: What Works?
Although African American women are less likely than white women to be diagnosed with breast cancer, they are more likely to be diagnosed at a later stage and to die of their disease. Regular mammography and prompt follow-up offer the best opportunity for finding and treating breast cancer early. In California, African American women are less likely than women of other racial or ethnic groups to obtain the free mammograms provided for low-income, uninsured, and underinsured women by Cancer Detection Programs: Every Woman Counts (CDP: EWC). Carol Somkin, Ph.D., at the Kaiser Foundation Research Institute, and Priscilla Banks, M.A., of the African American Advisory Committee, Oakland, conducted a qualitative study that involved interviews with staff at 56 CDP: EWC sites and African American women who had a mammogram at a CDP:EWC clinic or who called the program's 800 telephone number to ask for a referral but never obtained services. Based on these interviews, Somkin and Banks concluded that establishing new, diverse, and tailored outreach programs, creating a navigator program for women who call the 800 number, and implementing cultural sensitivity training programs for staff could lead to increased usage of mammography programs at CDP:EWC clinics by African American women.

Art for Recovery: Expanding Access for the Underserved
Support groups significantly improve coping and reduce distress for women with breast cancer. However, many women with breast cancer from underserved groups (low-income, little or no formal education, ethnic minority, lesbian, advanced in age, disabled) do not participate in these groups. Kate Collie, Ph.D., at Stanford University, Palo Alto, conducted in-depth interviews with fifteen women with breast cancer from underserved groups living in the San Francisco Bay Area. She also interviewed people involved in developing or offering support services that have a focus on creative expression for Bay Area women with breast cancer. The interviews were analyzed using Narrative Analysis, a method that is used to bring forward voices that have been excluded from mainstream discourse and to interpret responses in relation to participants' social and cultural contexts. The analysis of the interviews of the women with breast cancer yielded valuable new insights about their social, cultural, and psychological reactions to support group participation. For example, it became clear that for these women, groups that offered more emotional privacy, were offered in a more familiar format, and emphasized the resources other women in the group could offer, would be most beneficial. Dr. Collie is now conducting a pilot study that will use the recommendations of the participants in this project to create an art-based support group.

BCT.org: Feasibility of a Clinical Trial Matching Tool
Clinical trials are necessary to determine if new breast cancer therapies are more effective than those currently available. However, only 3 percent of cancer patients participate in these trials. To make trial enrollment easier, John Park, M.D., and Morton Lieberman, Ph.D., at the University of California, San Francisco, along with other researchers at the National Cancer Institute, developed BreastCancerTrials.org, an Internet-based tool for matching breast cancer patients to clinical trials. To use the tool, women complete a detailed online Personal Health Record (PHR). The computer matches the PHR to the eligibility criteria of registered trials. Women are notified that they have matched a trial, and are given the contact information for the clinical investigators. Drs. Park and Lieberman studied the website’s practicality and usefulness. They found that among 614 women who started a PHR, 70 percent completed it and that 95 percent of these women matched to at least one trial. They also found that the overwhelming majority of women reported that the site was helpful and easy to use. These findings have allowed the team to prepare for a nationwide launch of BreastCancerTrials.org.

The Cost of Breast Cancer in California
Breast cancer is a disease that affects a large number of women of all ages, from young mothers to retired grandmothers. The resulting economic burden of the disease is huge, and includes dollars spent to diagnose and treat women, the value of time lost from productive activities by those living with the disease, and the value of the lives lost prematurely. Estimates of the cost of the illness are valuable for decision makers who need to compare treatments and service delivery systems, determine what groups of people should be targeted to receive improved access to care, and establish program budgets. They also help advocates persuade others to focus on this costly disease. Currently, estimates of the cost of breast cancer in California are unavailable at the state level. Wendy Max, Ph.D., at the University of California, San Francisco, developed estimates of these costs using econometric models and approaches that utilize the best available data. Max found that in 2001, there were 12,934 women hospitalized for a primary diagnosis of breast cancer in California. The total direct cost of providing care to these women was $279 million. Breast cancer claimed the lives of 4,226 California women in 2001. Max found that these deaths represented $1.1 billion in lost productivity and nearly 100,000 years of life. Lastly, Max found that the mean lifetime cancer-attributable Medicare cost for a woman with breast cancer was $31,735. These findings will be useful for policymakers and advocates who want to target prevention, screening, and treatment dollars to the women who bear the greatest economic burden of breast cancer.

Decision Support in Rural Underserved North Coast Counties
Women with breast cancer in North Coast counties face many obstacles, including long travel times and cultural or language barriers, in obtaining information from cancer specialists prior to making treatment decisions. In 2001, two North Coast cancer resource centers implemented an in-person Consultation Planning (CP) service to help breast cancer patients prepare questions before physician visits. The resource centers hope to be able is to offer the CP service to all breast cancer patients, including Frontier, Latina and Native American women, by 2010. The centers would like to deliver these CP services via the telephone, instead of in-person. However, it was not known if women would find this acceptable. Jeffrey Belkora, Ph.D, at the University of California, San Francisco, and Sara O’Donnell at the Mendocino Cancer Resource Center, conducted interviews about and tested a telephone CP service with an ethnically diverse group of women with breast cancer in Mendocino County. They also interviewed 15 cultural advisors and 12 Latina and Native American breast cancer survivors, along with 10 past recipients of telephone CP services to ensure that the program was as acceptable to these women as it was to white women. Their success in this area led them to receive a new CBCRP award that will allow them to assess the impact of in-person and telephone CP services on cost and quality of life for women in Mendocino. This work will help expand CP services on the North Coast and allow for the development of a model program that resource centers could implement in other areas.

Determinants of Breast Cancer Treatment in the Underserved
Low-income women with breast cancer are more likely to be diagnosed with late-stage breast cancer, less likely to get standard treatment, and have lower 5-year survival rates than other women. Rose Maly, M.D., M.S.P.H., at the University of California, Los Angeles, and colleagues, surveyed 230 low-income, uninsured, newly diagnosed women with breast cancer in Los Angeles County to examine what factors affected their ability to receive appropriate treatment, the type of support services they received, and which patient-physician interaction they found most beneficial. Dr. Maly and her team found that Latinas reported poorer overall health, more difficulties accessing medical care, less physician information giving, less breast cancer knowledge, and more breast cancer-related symptoms. They found that most of the women experienced substantial treatment delays. In addition, the women had higher mastectomy rates than would be expected. These findings suggest that assigning a source of primary care and improving patient-physician communication could improve outcomes in low-income women with breast cancer. The team recently received funding from the National Cancer Institute to study follow-up breast cancer and general medical care, recurrence rates, mortality, and 30
survivorship in this group of women. Findings from this research were published in Cancer 2003; 97(6):1517-27.

Does a Peer Navigator Improve Quality of Life at Diagnosis
Women indicate the greatest needs for information at the time of their initial breast cancer diagnosis. However, this is also the time when a woman, overwhelmed by shock and trauma, is least likely to absorb information provided or seek new sources of information. A trained peer counselor, called a peer navigator, can not only provide support but can judge the level of information to disclose and pace that information in a way that can be easily absorbed and understood. David Spiegel, M.D., at Stanford University, Palo Alto, and Caroline Bliss-Isberg, Ph.D., of WomenCARE, a well-established Santa Cruz agency providing free support services for women with cancer, found in a previous CBCRP-funded pilot study funded that newly diagnosed women with breast cancer, called sojourners, appeared to benefit from being matched with a peer navigator. This new CBCRP grant allowed them to continue to study the impact of peer navigators by randomizing newly diagnosed women to be matched with a navigator or to be put in a control group. (The control group allowed the researchers to assess the impact of a navigator.) The team enrolled 104 newly diagnosed women in their trial; half received a navigator and half received no further intervention. Preliminary findings indicate that the sojourners were more likely than the controls to have less anxiety and distress in addition to having better marital satisfaction. Drs. Spiegel and Bliss-Isberg are now completing the data analysis. These findings will provide additional insights on the extent to which peer navigator programs can improve the quality of life of women with breast cancer.

Kitchen Divas: Breast Cancer Risk Reduction for Black Women
African American women are at increased risk for developing pre-menopausal and post-menopausal breast cancer. They also have high rates of obesity. Janette Robinson Flint at Black Women for Wellness, Los Angeles, and Kimlin Ashing-Giwa, Ph.D., at the University of California, Los Angeles, explored the feasibility of initiating a culturally and community-rooted breast cancer risk reduction program, called Kitchen Divas, for African American women. The Kitchen Divas intervention would inform African American women about breast health education and practices and teach them how to modify their dietary behaviors, minimize weight gain, and reduce their risk of obesity-related breast cancer. Ms. Flint and Dr. Ashing-Giwa found that many community members were interested in seeing a program like Kitchen Divas get underway, although a few did express concerns about whether low-income women have the kitchen equipment needed for the recipes that would be disseminated. (Many only have a microwave.) This research led to a revised concept paper that was submitted to the CBCRP for future funding consideration.

Immune Function Genes and Race Differences in Breast Cancer
Breast cancer rates differ among women of different racial and ethnic groups for reasons that remain unclear. Sally Glaser, Ph.D., at the Northern California Cancer Center in Fremont, explored whether a genetic risk factor, called HLA gene type, which influences how the immune system functions and is known to differ between racial and ethnic groups, might be responsible in some way for these differences. Dr. Glaser and her colleagues used blood samples that had been provided by white, African American, and Latina pre-menopausal women (206 with breast cancer patients and 269 without) for a Greater Bay Area breast cancer study to determine
specific HLA types for each woman. They found that HLA class I A and B, class II DRB1 and DQB1, and DR-DQ genes were related to breast cancer. Women who had the A-23 gene had a 50 percent lower breast cancer risk, while women with the A-32 or DRB1-12 genes or the DR-DQ 1203 genes had a three times greater risk of developing the disease. The team also found some differences in HLA associations across racial and ethnic groups. If these findings are replicated in other larger studies, this knowledge could lead to new ways of assessing breast cancer risk of women in specific racial or ethnic groups.

Impact of Breast Cancer and its Therapy on Bone Density
As breast cancer survival rates continue to improve it becomes increasingly important for breast cancer survivors and their doctors to have more knowledge about how breast cancer and its treatment affect long-term health. This CBCRP grant allowed Carolyn Crandall, M.D., at the University of California, Los Angeles, to learn how to conduct research on menopause and osteoporosis in breast cancer survivors and to initiate a study on osteoporosis in breast cancer survivors. Dr. Crandall is now exploring whether women with breast cancer start out with better bone health (higher bone density) than women without breast cancer, whether women with breast cancer lose bone at different speeds after menopause compared to women without breast cancer, and whether blood hormone levels can predict the rate at which breast cancer survivors lose bone. Findings from Dr. Crandall’s research have been published in Breast Cancer Research and Treatment 2004; 88(3):257-61.

The Impact of Structure on Quality of Breast Cancer Care
There are three components to quality of health care: structure of care (e.g., setting, financial, and organizational arrangements), process of care (e.g. education, diagnosis, and treatment), and outcomes of care (e.g. survival, recurrence, and quality of life). Understanding the impact structure has on processes and outcomes is vital to improving the quality of breast cancer care. Katherine Kahn, M.D., at the University of California, Los Angeles, surveyed 477 medical oncologists, radiation oncologists, and surgeons in Los Angeles County to learn how structure impacts processes and outcomes. Dr. Kahn found, in part, that many specialists report facing financial incentives to provide certain services; that providing routine symptom evaluation to breast cancer patients varies by the physicians’ specialty and gender; and that physicians often face barriers in arranging services and referrals. Dr. Kahn and colleagues are now merging these findings with data from surveys completed by breast cancer patients with the goal of identifying which structural change can improve the quality of care breast cancer patients receive.

Improving Quality of Life in Older Women after Breast Cancer
A woman’s risk of getting breast cancer increases with age, which is why breast cancer is more common in older women. However, studies have found that older women are less likely than younger women to receive appropriate treatment. Rose Maly, M.D., M.S.P.H., at the University of California, Los Angeles, studied the differences in the patient-physician relationship between older and younger women and the impact that information support services can have on older women’s treatment decisions and quality of life. Dr. Maly and her team found that older breast cancer patients received less informational support at the time of their breast cancer diagnosis than younger women did. In addition, they were more likely to experience treatment delays and to receive a mastectomy rather than a lumpectomy. The team also found that older women believed that informational support services, such as a scheduled follow-up phone call from the physician after the diagnosis, specific information on support groups, clinical trials, and, most importantly, how to keep functioning normally during treatment, would have improved their quality of life. This research suggests that physicians can play an important role in reducing the health care disparities documented in older women with breast cancer. Findings from this research were published in Cancer 2003; 97(6):1517-27, American Geriatrics Society 2004; 52(7):1138-45, Breast Cancer Research and Treatment 2004; 85(3):201-9, and Psychooncology 2005; 14(7):535-45.

Interplay of Family Context and Ethnicity in BRCA1/2 Testing
Overall, more women are choosing to undergo genetic testing to determine if they have an increased risk of developing breast cancer. However, participation rates among minority women remain low. Beth Glenn, Ph.D., at the University of California, Los Angeles, studied what role family plays in encouraging or discouraging minority women from being tested. Dr. Glenn interviewed 37 women, including 5 Caucasians, 3 Koreans, 6 Chinese, 2 Filipinos, 7 South Asians, 9 African Americans, and 5 Latinas. Most were breast cancer survivors; others had at least one first-degree relative with breast cancer. Dr. Glenn found that the majority of ethnic minority women who participated in this study had never heard of genetic testing for breast cancer risk. This finding suggests that culturally tailored educational programs need to be developed and implemented in order to increase the number of ethnic minority women who know about and choose to participate in genetic evaluation programs.

Late Cognitive and Brain Changes after Breast Cancer Therapy
Although breast cancer patients who receive chemotherapy as part of their treatment frequently complain of memory and concentration problems, even years after completion of therapy, few studies have systematically investigated these changes. Helen Rebecca Rausch, M.S., Ph.D., at the University of California, Los Angeles, and colleagues followed a group of breast cancer patients for four years in order to assess what type of long-term impact chemotherapy may have. The team’s preliminary analyses suggest that women had problems with their memory for at least 36 months after treatment. Findings from cognitive tests found a subtle decline in attention and concentration in women treated with chemotherapy. However, verbal learning skills, which had declined at 11 months post-treatment, appeared to revert back by 36 months to where women were before they started chemotherapy. This research provides an understanding of the dynamic changes that occur in cognition and memory after adjuvant chemotherapy and provides insight into the overall impact chemotherapy can have on quality of life.

Reducing Disparities among Korean Women
Women who receive mammography services at the Korean Health, Education, Information and Research Center’s “Cancer Detection Programs: Every Woman Counts” program have a low mammography re-screening rate. Lack of re-screening decreases mammography’s effectiveness in reducing mortality. Soo-Young Chin, Ph.D, at the Korean Health, Education, Information and Research Center( KHEIR), Los Angeles, and Annette Maxwell, Dr.P.H., at the University of California, Los Angeles, developed a Korean-language brochure designed to increase the low mammography re-screening rate among low-income Korean American women, and pilot tested it at KHEIR and the Koryo Health Foundation. Drs. Chin and Maxell found that the brochure had only a small effect on re-screening rates. This suggests that although a brochure may encourage some women to obtain repeat screening, more intensive efforts are needed, such as phone calls. This finding helps clarify what is and is not an effective means of improving re-screening and could lead to the development of new types of programs and materials that can educate Korean women about the importance of routine mammography screening.

Socioeconomics and Ethnicity Affect Tumor Endocrine Status
Studies have repeatedly found disparities in breast cancer incidence and survival that appear to be linked to race or ethnicity. Researchers believe that these disparities may be, in part, because certain types of breast cancer tumors are more likely to develop in some racial or ethnic groups than they are in others. Vinona Bhatia, M.D., at the University of California, San Francisco, and colleagues, explored whether women of different racial and ethnic groups who received breast cancer surgery at San Francisco General Hospital had different types of tumors. They found that African American women were more likely than women of other racial or ethnic groups to have tumors that are estrogen receptor negative, progesterone receptor negative, and HER-2-negative. These so-called triple-negative tumors are the most aggressive and most difficult to treat. The team also initiated a collaboration with breast cancer physicians in Kampala, Uganda, that allowed them to test tumor samples from 12 Ugandan women. They found that the tumors Ugandan women developed were also highly likely to be triple negative. Bhatia and colleagues are continuing to study the frequency of this poor-prognosis breast cancer subtype in African American women. This work could lead to a new understanding of some of the racial disparities seen in breast cancer survival.

Underserved Women with Breast Cancer at End of Life
End-of-life care, in general, is poor in the U.S. For low income, underserved women this problem is more acute, since the risk of recurrence and death is higher and their needs are less likely to be met. Beverly Burns, MS, L.Ac., at the Charlotte Maxwell Complementary Clinic, Oakland, and Shelley Adler, Ph.D., at the University of California, San Francisco, used this grant to address the scientific and collaborative issues raised during the scientific peer review of their pilot Community Research Collaboration application. They established a conceptual framework for end of life issues; determined how they would analyze the data collected from their interviews with women with metastatic breast cancer who are clinic clients and their physicians, complimentary and alternative medicine (CAM) providers, and informal caregivers; reviewed recruitment issues for physician and CAM practitioners; and assessed the patient acceptability of the proposed interview questions. This work led to a revised concept paper and to a CBCRP award that will allow the researchers to study the values and needs of underserved women at end of life.

Weight Loss in Public Hospital Breast Cancer Patients
Women who are obese or who gain weight after a breast cancer diagnosis are more likely to have a recurrence or die, compared to lighter women. Obesity results in increases in hormones, like insulin and estrogen, that can stimulate breast cancer growth. Obesity is an even greater problem in ethnic and racial minority women commonly seen in public hospital settings. Rowan Chlebowski, M.D., Ph.D., at Harbor-UCLA Medical Center, Torrance, attempted to test the effects of a low-calorie diet and a moderate exercise program on body weight and insulin resistance in overweight postmenopausal women with early stage breast cancer seen in a public hospital. However, it proved impossible to recruit and retain women for this study. This experience, combined with new research that has found that a lifestyle intervention targeting dietary fat intake (but not weight loss) could reduce the risk of a breast cancer recurrence, helped Dr. Chlebowski develop a dietary study that will use a centralized telephone intervention strategy. This study is being funded by the National Cancer Institute, Canada.

Grants in Progress: 2006

Assessing Recurrent Genomic Aberrations Linked to Ethnicity
Koie Chin
University of California, San Francisco

A Blueprint for Advancing Quality in Breast Cancer
Laura Esserman
University of California, San Francisco

Breast Cancer Risk Profile of Vietnamese Nail Salon Workers
Kim Nguyen and Peggy Reynolds
Asian Health Services and Northern California Cancer Center

Consultation Recording for Rural Underserved Breast Cancer Patients
Sara O’Donnell, Jeff Belkora and Dawn Elsbree
Mendocino Cancer Resource Center, University of California, San Francisco and Humboldt Community Breast Health Project

Correlates of Lymphedema Severity and Access to Intervention
Linda Wardlaw, Rani Eversley and Dolores Moorehead
Charlotte Maxwell Complementary Clinic, Woman’s Cancer Resource Center and University of California, San Francisco

Cost-effectiveness of Breast MRI Screening by Cancer Risk
Allison Kurian
Stanford University

Effect of Bright Light on Fatigue in Breast Cancer
Sonia Ancoli-Israel
University of California, San Diego

Empowering Acupuncturists to Cooperate with Oncologists
Michael Johnston
University of California, Los Angeles

Expanding Rural Access: Distance Delivery of Support Groups
Susan Ferrier, Mary Anne Kreshka and Cheryl Koopman
Northern Sierra Rural Health Network and Stanford University

Hormone, Psychologic & Immunologic Factors & BC Survivorship
Hillary Klonoff-Cohen
University of California, San Diego

Latinas and DCIS: Treatment Decisions and Quality of Life
Celia Kaplan
University of California, San Francisco

Lifestyle Factors & Breast Cancer Prognosis in Asian Americans
Anna H. Wu
University of Southern California

Living with Advanced Breast Cancer: A Predictive Model
Annette Stanton
University of California, Los Angeles

New Breast Cancer Approaches: Integration, Communication
Leah Karliner
University of California, San Francisco

Partnership to Reduce Cancer Disparities in Spanish Speakers
Molly Bergstrom and Rena Pasick
Women's Cancer Resource Center and University of California, Los Angeles

Peer Mentors Promoting Breast Cancer Clinical Research
Michele Rakoff, Annette Maxwell and John Link
Breastlink Medical Group, Inc. and University of California, Los Angeles

Psychobiological concomitants of bereaved women at br ca risk
David Wellish
University of California, Los Angeles

Psychosocial Support Services for Latinas with Breast Cancer
Carmen Ortiz and Anna Nápoles-Springer
Circulo de Vida and University of California, San Francisco

Racial Disparity in Breast Cancer Mortality
Rebecca Smith-Bindman
University of California, San Francisco

South Asian Women with Breast Cancer: What are Their Needs?
Zul Surani, Roshan Bastani and Beth Glenn
South Asian Cancer Foundation and University of California, Los Angeles

Treating Insomnia with CBT in Women with Breast Cancer
Lavinia Fiorentino
University of California, San Diego

Underserved Women with Breast Cancer at End of Life
Beverly Burns and Shelley Adler
Charlotte Maxwell Complementary Clinic and University of California, San Francisco

Young Breast Cancer Survivors: Ten Years Later
Joan Bloom
University of California, Berkeley

Research Initiated in 2006

Addressing Cultural & Tribal Issues in Breast Cancer
Linda Navarro and Marlene von Friedrichs-Fitzwater
Turtle Health Foundation and University of California, Davis

Breast Cancer Education for Deaf and Hard-of-Hearing Women
Heidi Kleiger and Barbara Berman
Greater Los Angeles Council on Deafness, Inc. and University of California, Los Angeles

The Breast Cancer Experience of Slavic Women
Roman Romaso and Debora Paterniti
Slavic Assistance Center and University of California, San Diego

Breast Health Literacy and Health Care Decision Making
Joel San Juan and Suzanne Lindsay
Operation Samahan Health Clinic and San Diego State University Research Foundation

Dialogue with Breast Cancer Survivors
Grace Yoo
San Francisco State University

Filipina Breast Cancer Support: What Model is Meaningful?
Edwin Jocson and Nancy Burke
West Bay Pilipino Multi-Service Center and University of California, San Francisco

Fresno Breast Cancer Navigator Pilot Program
Mary Wallace and John Capitman
San Joaquin Valley Health Consortium and California State University, Fresno

Increasing Mammography Among Latinas with Disabilities
Elsa Quezada and H. Stephen Kaye
Central Coast Center for Independent Living and University of California, San Francisco

Informal and Formal Support and Needs Among Samoan Survivors
Sala Mataalii and Sora Tanjisiri
Samoan National Nurses Association and CSU Fullerton Auxiliary Services Corporation

Introducing Acupuncture to Black Survivors for Wellness
Carolyn Tapp and Michael Johnston
Women of Color Breast Cancer Survivors Support Project and University of California, Los Angeles

Mammography Screening for Latinas with Diabetes
Christine Noguera and Stergios Roussos
Golden Valley Health Centers and California State University, Fullerton

Neighborhood Environment and Obesity in Pre-adolescent Girls
Irene Yen
University of California, San Francisco

Social Capital, Social Support and Long-Term Quality of Life
Dana Peterson
University of California, Berkeley

Social Support and QOL in Older Minority Women with Breast Cancer
Yoshiko Umezawa
University of California, Los Angeles

Southeast Asian Breast Health Navigation
Mary Ann Foo and Marjorie Kagawa-Singer
Orange County Asian & Pacific Islander Community Alliance and University of California, Los Angeles

Special Research Initiatives State of the Science Lit Review
Peggy Reynolds and Susan Hurley
Northern California Cancer Center

Telephone-Based Decision Support for Rural Patients
Sara O’Donnell and Jeff Belkora
Mendocino Cancer Resource Center and University of California, San Francisco