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 over 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 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

Breast Cancer Risk Profile of Vietnamese Nail Salon Workers
Vietnamese workers run more than 80 percent of California nail salons. These workers routinely handle cosmetic products that contain carcinogens and endocrine disruptors, which may increase a woman’s risk of breast cancer. Kim Nguyen, at Asian Health Services, Oakland, and Peggy Reynolds, Ph.D., at the Northern California Cancer Center, Berkeley, conducted focus groups and surveys of Vietnamese nail salon workers about their health concerns and work conditions. They found that nearly all of the women, most of whom were immigrants, were very concerned about the health effects of the chemicals they used. Over half of the women surveyed had been working in the nail salon industry for more than five years, and a majority of these women reported that they had experienced health problems, such as skin and eye irritation, breathing difficulties, headaches, and asthma, as a result of their work. Eighty-four percent of the women said they had some type of health insurance, and among women over 40 years of age, 89 percent said they had been screened for breast cancer, most (83%) within the last two years.

These results will be used to guide future interventions to reduce breast cancer risk among Vietnamese women.

Partnership to Reduce Cancer Disparities in Spanish Speakers
Latinas often do not have access to the breast cancer education and support available in more affluent communities. Lay Health Workers (LHWs), also known as promotoras, are widely used in community clinics as a valuable link between the health care system and the Latino community. However, these promotora programs vary significantly, and there is little research that identifies common challenges and synthesizes their solutions. Rena Pasick, Dr.P.H., at the University of California, San Francisco, and Peggy McGuire at the Women’s Cancer Resource Center, Oakland, conducted an 18-month project in Alameda County to prepare for a 3-year evaluation of promotora programs. This work included interviewing directors of agencies that used promotoras, promotora managers, and promotoras themselves. They also trained members of the Alameda City Latino Center Coalition (ACLCC) in the qualitative research methods they would use in this project. The initial study found that LHW programs empower promotoras, increase awareness of specific health issues and access to health care, and foster social change. The team will now develop, implement, and evaluate breast cancer promotora programs at two primary clinics in Alameda serving Latinos.

Correlates of Lymphedema Severity and Access to Intervention
Data previously collected by Rani Eversley, Ph.D., at the University of California, San Francisco, Linda Wardlaw, at the Charlotte Maxwell Complementary Clinic, Oakland, and Dolores Moorehead, at the Women's Cancer Resource Center, Oakland, suggested that ethnic minority women report more arm swelling and pain (lymphedema) after their breast cancer treatment. The researchers also found that many of the women with arm swelling and pain said they had not been informed about the possibility of developing lymphedema prior to their breast cancer surgery and thus were unable to take any preventive measures. This project allowed the research team to develop and pilot test a simple, low-cost, culturally sensitive program, called Total Arm Care Intervention (TACI), to help reduce the risk for lymphedema among women undergoing treatment for breast cancer. The team intends to continue to study the effectiveness of their TACI program.

Consultation Support for Diverse Rural Breast Patients
It is not enough to help patients prepare a list of questions before meeting with a breast care specialist, as the answers they receive can be overwhelming. Jeffrey Belkora, Ph.D., at the University of California, San Francisco, Sara O’Donnell, at the Mendocino Cancer Resource Center, Mendocino, and Dawn Elsbree, at the Humboldt Community Breast Health Project, Arcata, investigated which procedures best help patients absorb, remember, and act upon the information and advice they get from breast specialists. Their team interviewed 12 doctors, 10 community health agency staff, and 12 diverse (4 Native American, 4 Latina, and 4 White) breast cancer survivors about what could improve these interactions. Some of the key themes that emerged included: changes to the physical infrastructure, such as the provision of DVDs and recording devices; changes in institutional policies, such as arranging for interpreters; change in patient, doctor, or accompanier practices or behaviors, which could include providing patients with more information on how to select an accompanier as well as instituting training programs for caregivers; development of new tools, such as databases of community resources and psychotherapists. This work could lead to new programs that help patients, accompaniers, and their doctors make the most of consultations leading to major treatment decisions.

Racial Disparity in Breast Cancer Mortality
Substantial variation exists in breast cancer outcomes by race and ethnicity. Rebecca Smith- Bindman, M.D., at the University of California, San Francisco, investigated the reasons for these differences by analyzing the records of 95,000 women with breast cancer diagnosed between 1992-2001. Dr. Smith-Bindman and her team found that, overall, minority women underutilize mammography in comparison to White women. The team found no significant differences in advanced cancer rates and total cancer rates between White and African American women who had been screened between 1-3 years prior to diagnosis. They also found that most, but not all, of the differences in tumor characteristics at diagnosis were due to later use of mammography, rather than underlying biology. Lastly, they found that patients from minority groups were less likely to receive appropriate treatments for early-stage breast cancer. This work expands on what is known about, and could help decrease, racial disparities in breast cancer mortality. Findings from this research were published in Cancer 104(2005)2347, Annals of Internal Medicine 144(2006)541, and the American Journal of Preventative Medicine 2(2006)142.

Dialogue with Breast Cancer Survivors
Studies have shown that African American women and White women have very different breast cancer experiences, from their diagnosis and treatment to their knowledge about the disease and their participation in their care. Grace Yoo, Ph.D., at San Francisco State University, coordinated a three-day symposium for 44 African American women with breast cancer living in the San Francisco Bay Area and 20 researchers, clinicians, and advocates to identify and address issues and problems faced by African American women with breast cancer. Topics discussed at the retreat included environmental health, sexuality, exercise, nutrition, spirituality, psychosocial needs, and clinical and diagnostic concerns. Based on information gathered at the retreat, Dr. Yoo and her colleagues designed and successfully piloted an eight-week diet and exercise intervention for African American breast cancer survivors. The team hopes to conduct another symposium for African American survivors that will focus on spirituality, nutrition, exercise, and psycho-social concerns. They also intend to develop a second diet and exercise program.

Expanding Rural Access: Distance Delivery of Support Groups
Women with breast cancer living in rural areas have less access to psychosocial support than their urban counterparts. Mary Anne Kreshka, M.A. and Susan Ferrier, R.N., at the Northern Sierra Rural Health Network, Nevada City, and Cheryl Koopman, Ph.D., at Stanford University, Palo Alto, collaborated with the Stanford University School of Medicine to determine the feasibility of using their videoconferencing network to provide leader-led support groups for women living with breast cancer. The research team recruited 27 women living with breast cancer living in rural northeastern California for this pilot study. Each woman participated in an eight-session support group led by an experienced oncology social worker. Up to four videoconferencing sites were connected for each support group so participants could interact with each other and the facilitator. Participants reported that the groups were beneficial in facilitating informational support and promoting emotional bonds with other women with breast cancer. These findings suggest that support groups provided through a videoconferencing network have the potential to improve the lives of rural women with breast cancer.

Effect of Bright Light on Fatigue in Breast Cancer
Women with breast cancer undergoing chemotherapy often report disturbed sleep and increased symptoms of fatigue and depression. These patients also exhibit a disruption of their circadian rhythm, or biological clock. This clock is driven by exposure to bright light. Sonia Ancoli- Israel, Ph.D., at the University of California, San Diego, previously found that women with breast cancer are exposed to less bright light during chemotherapy, and that less light exposure is related to increased fatigue. To follow-up on that finding, Dr. Ancoli-Israel and her team had 20 women undergoing chemotherapy self-administer either bright white light (BWL) or dim red light (DRL) for 30 minutes on the morning of their first four cycles of chemotherapy to measure the effect of exposure to bright light. The study found that increased light exposure during chemotherapy increased total sleep time by 22 minutes and decreased wake time during the night by 12 minutes. In addition, the women reported decreased fatigue and an improved quality of sleep. Dr. Ancoli-Israel has received funding from Litebook, Inc., to continue this study in a greater number of patients.

Living With Advanced Breast Cancer: A Predictive Model
Women diagnosed with Stage IV breast cancer (cancer that has spread to the bone, brain, and soft tissues) have a poor prognosis. These women face not only the likelihood of an uncertain future, but also the prospect of having nearly continuous medical treatments and cancer-related problems. Annette Stanton, Ph.D., at the University of California, Los Angeles, followed more than 100 women with metastatic disease for more than three months in order to identify both their central concerns and the factors that aid or hinder their lives. She found that these women’s greatest concerns involved fear of mortality, loss of independence, the impact being ill had on their interpersonal relationships, and the effect of treatment on their lives. She also found that the women who said they were actively engaged in pursuing cherished life goals and who were able to express their emotions had fewer depressive symptoms. Dr. Stanton intends to develop an educational program to help improve the quality of life of women living with advanced disease.

Psychobiological Concomitants: Bereaved Women at Breast Cancer Risk
Grief affects the lives of many women who are at high risk for breast cancer due to a family history of the disease. Some women have a more complicated process for adjusting to the death of a mother or sister. The chronic stress of what psychiatrists refer to as complicated grief may increase the psychobiological risk for women already at high risk for breast cancer. David Wellisch, Ph.D., at the University of California, Los Angeles, explored whether grief-driven activation of emotion centers of the brain increases breast cancer risk by causing cortisol dysregulation, which can compromise the immune system. Dr. Wellisch and his team interviewed women who had lost a mother or a sister in the past five years and had them provide daily saliva samples to measure cortisol levels. They also had these women undergo a functional magnetic resonance imaging scan while looking at pictures of their deceased loved one so that they could measure brain activation during the feeling of grief. Dr. Wellisch is now analyzing the data they have collected. Preliminary findings demonstrated differences in the regional brain activity and cortisol pattern levels between the women who were more resilient and those with complicated grief. This work could lead to new programs that address grief in high-risk women.

Peer Mentors Promoting Breast Cancer Clinical Research
Clinical trials provide opportunities for breast cancer patients to obtain state-of-the-art treatment. However, only a small number of breast cancer patients enroll in these studies. Annette Maxwell, Dr.P.H., at the University of California, Los Angeles, and John S. Link, and Michelle Rakoff, at Long Beach Memorial Medical Center/University of California, Los Angeles, investigated whether a Clinical Research Mentoring program could increase patients’ interest in clinical trials. The team conducted focus groups with breast cancer survivors to learn what they believed patients needed to know to make an educated decision about enrolling in a clinical trial and what factors influenced their own decision-making. Based on their findings, the team developed a one-day Clinical Research Mentor training program, which was attended by 10 breast cancer survivors. The team intended to study whether pairing a mentor with a newly diagnosed breast cancer patient would impact patient enrollment in two clinical trials offered by the MemorialCare Breast Cancer Research Group. However, both of those trials closed and no new suitable trials became available. Even so, the interest breast cancer survivors expressed in the Clinical Research Mentoring program suggests that peer mentors might help increase patient enrollment in clinical trials.

Psychosocial Support Services for Latinas with Breast Cancer
Latina breast cancer patients infrequently use cancer support services, even though they may be at higher risk of psychosocial problems than White women. Carmen Ortiz, Ph.D., at Círculo de Vida (CDV), San Francisco, which provides services to Latinos living with cancer, and Anna Napoles-Springer, Ph.D., MPH, at the University of California, San Francisco, investigated what encourages or dissuades Spanish-speaking Latinas with cancer from using support service, the psychosocial needs of these women, and the type of peer support counselor program they would find most useful. The team surveyed 89 Spanish-speaking Latina cancer patients, 29 Latina breast cancer survivors, and 17 community advocates working with Latinas with breast cancer at CDV. Based on these findings, Drs. Ortiz and Napoles-Springer developed and then pilot tested a training program and resource manual for community organizations interested in starting a peer support counselor program. Next, they will study a peer-delivered intervention that has been adapted for use with Spanish-speaking Latinas with breast cancer. If proven effective, this program could serve as a model to meet the psychosocial needs of other vulnerable women diagnosed with breast cancer.

Treating Insomnia with CBT in Women with Breast Cancer
Studies have found that up to 70 percent of breast cancer survivors experience insomnia. This insomnia is often associated with depression, anxiety, fatigue, and low quality of life. Lavinia Fiorentino, M.S., M.A., at the University of California, San Diego, investigated whether cognitive behavioral treatment for insomnia (CBT-I) could improve sleep and quality of life and decrease fatigue, depression, and anxiety. She randomly assigned 14 breast cancer survivors to either six weeks of CBT-I followed by six weeks of follow-up, or to six weeks of regular treatment followed by 6 weeks of CBT-I. The study found that the women who received CBT-I in the first six weeks had improved self-rated insomnia after treatment compared to the participants who had regular treatment. The study also found that the sleep benefits gained during treatment were maintained at follow-up, and that quality of life had improved. If these findings are successfully replicated in larger studies, it could lead to expanded use of CBT-I to decrease insomnia and improve quality of life in women with breast cancer.

Underserved Women with Breast Cancer at End of Life
End-of-life care, in general, is extremely inadequate 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. Shelley Adler, Ph.D., at the University of California, San Francisco, and Beverly Burns, M.S., B.A., L.Ac., at the Charlotte Maxwell Complementary Clinic (CMCC), Oakland, interviewed 10 underserved women with metastatic breast cancer along with an oncologist, complementary and alternative medicine (CAM) provider, or informal caregiver the client selected, to learn more about underserved women’s beliefs and concerns about end of life of care. Although the analysis of the data is still ongoing, a number of major themes in patients’ experiences have emerged, including the enormous impact of cancer on a woman’s finances, how difficult it is for women, especially mothers, to be in the “sick” role, and how concerned women are about not having done enough to prepare for death. The research team also found that most CMCC clients had not made decisions about care during end of life or their wishes for what should be done after they die. The team now intends to develop an "ethical will" to improve the quality of CMCC clients' end of life and to implement a community peerbased system to support women through the process of completing this document.

Filipina Breast Cancer Support: What Model is Meaningful?
Breast cancer among Filipina American women represents a major but largely neglected cancer disparity. In 2004, a collaboration between West Bay Pilipino Multi-Service Center (West Bay), the UCSF Comprehensive Cancer Center, and the San Francisco General Breast Care Program, resulted in the establishment of Sinag Tala, the first Filipina breast cancer support group in San Francisco. Edwin Jocson, B.A., at the West Bay Pilipino Multi-Service Center, San Francisco, and Nancy Burke, Ph.D., at the University of California, San Francisco, used this planning grant to strengthen their proposal for a study that would investigate which type of support programs would best serve the needs of women in Sinag Tala. During the planning process, meetings with community partners helped them to shift their research focus to one that would be better able to assess the most effective peer education programs. Mr. Jocson and Dr. Burke submitted a new grant application titled, “Filipina Breast Cancer Survivors as Peer Educators.”

New Breast Cancer Approaches: Integration, Communication
Timely integration of proven new information into clinical practice and quality communication with patients about this new information is needed to ensure that all women with early-stage breast cancer receive quality care, including women in California with limited English proficiency. Leah Karliner, M.D., at the University of California, San Francisco, is exploring how breast surgeons and oncologists incorporate new approaches to care, how they communicate with patients about these new approaches, and how language barriers affect that communication. Dr. Karliner and her team mailed a 32-question survey to 662 surgeons and 588 oncologists in California. To date, they have received 314 surveys that have been completed by a surgeon or an oncologist. The team is currently attempting to get more physicians to complete the survey. This work has the potential to facilitate improved communication between breast cancer doctors and their patients.

Cost-effectiveness of Breast MRI Screening by Cancer Risk
Breast magnetic resonance imaging (MRI) is increasingly used as a screening tool for breast cancer. Although breast MRI has been shown to detect cancers when they are smaller, MRI is more costly than mammography and can lead to a high rate of unnecessary breast biopsies. Allison Kurian, M.D., at Stanford University, Palo Alto, investigated the effectiveness (measured in terms of breast cancer mortality reduction) and cost-effectiveness (measured as a ratio of cost versus effectiveness) of using breast MRI in addition to mammography by adapting a computer simulation model of mammography screening to reproduce the natural history of breast cancer in women at high risk due to a BRCA1 or BRCA2 mutation. Dr. Kurian and her team found that adding MRI yielded a cost-effectiveness ratio that is similar to that of other widely accepted interventions in breast cancer management. The results of this research may inform both individualized patient recommendations as well as screening guidelines for women with a BRCA1 or BRCA2 mutation. Findings from this research were published in the Journal of the American Medical Association 295(2006)2374.

Empowering Acupuncturists to Cooperate with Oncologists
Many breast cancer patients seek treatment from acupuncturists, yet this care is often not coordinated with the care the patients are receiving from their physicians. Michael Johnston, Ph.D., at the University of California, Los Angeles, interviewed 100 acupuncturists who treat breast cancer patients to learn more about the problems they face coordinating care with physicians. Based on these findings, Dr. Johnston developed an educational program for acupuncturists, oncology clinicians, and breast cancer patients. Dr. Johnston also published a manuscript on acupuncture for chemotherapy-associated cognitive dysfunction. He expects to publish additional articles on the evidence in support of acupuncture, coordination of care from the acupuncturist’s perspective, and health communication and informed medical decisionmaking by breast cancer patients. By helping acupuncturists and oncology professionals improve health services coordination, this project could improve quality of care.

Multilingual Access to Breast Cancer Early Detection
Public medical facilities must provide equal access to health care for increasing numbers of ethnically diverse women. In order to make California’s “Every Woman Counts” program a reality, medical systems need to make changes that promote equal access to breast health services, regardless of a woman’s language. Susan Stewart, Ph.D., at the University of California, San Francisco, and Linda Engelstad, M.D., at the Alameda County Health Care Foundation, Oakland, used this planning grant to strengthen their proposal for a Pilot Study that would address the challenges faced by public healthcare facilities to provide improved access to health care for increasing numbers of ethnically diverse women with limited English proficiency. During the planning process, meetings with experts in this research field led Drs. Steward and Engelstad to identify a more appropriate scientific model for their study design and to expand their Community Advisory Committee. Dr. Stewart and Engelstad submitted a revised grant application to the CBCRP.

Grants in Progress: 2007

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

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 Ca Prognosis in Asian-Americans
Anna H. Wu
University of Southern California

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

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

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

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

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

Research Initiated in 2007

Breast Health Behaviors of Immigrant Afghan Women
Joan Bloom and Aida Shirazi
University of California, Berkeley and Afghan Coalition

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

Networking Breast Cancer Navigator Programs in Northern California
Lisa Bailey
Alta Bates Summit Medical Foundation

Science Literacy & Breast Cancer Clinical Trials Education
Georgia Sadler and Natasha Riley
University of California, San Diego and Vista Community Clinic

Sister Survivor: African American Breast Cancer Coalition
Kimlin Ashing-Giwa and Gloria Harmon
Beckman Research Institute of the City of Hope and Women of Essence

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