The Community Impact of Breast Cancer

The CBCRP supports research and formulation of public policies that would contribute to breast cancer prevention, improve the lives of women who have or have had the disease, and lead to fewer deaths. The Program recognizes the need to reduce unequal access to prevention, detection, treatment, and survivorship services. Sociocultural, behavioral, and psychological research projects to reduce the impact of breast cancer on each woman are also encouraged.

Research Conclusions

Breast Cancer Prevention: The Views of Women and Physicians.
Celia Kaplan, Dr.P.H., at University of California, San Francisco, surveyed 1700 white, Asian Pacific Islander, African American and Latina women who had had mammograms and did not have breast cancer. Almost one-third of the women were at high risk for breast cancer. The goal was to find out whether the women had heard of, talked with their doctors about, or used either of four breast cancer risk-reduction methods: two preventive drugs (tamoxifen and raloxifene), genetic testing with counseling, and preventive surgical removal of breasts or ovaries. Far more women had heard of preventive methods than discussed them with their doctors. Fifty-four percent had heard of tamoxifen and 4% had discussed it with their doctors or used it. The results were similar for raloxifene (27% and 4%), genetic testing (40% and 4%) and preventive surgery (69% and 5%). The researchers also surveyed 822 California physicians specializing in family practice, internal medicine, and obstetrics/gynecology. Eighty-six percent reported initiating counseling about breast cancer prevention, 45% had referred a patient for genetic testing, 31% had prescribed raloxifene, and 11% had prescribed tamoxifen. Forty percent said time was a barrier to counseling about breast cancer prevention, and 19% cited lack of knowledge.

Women with Breast Cancer: Quality of Life and Diet Adherence.
A diet that includes high amounts of vegetables, fruit, and fiber may protect women from a recurrence of breast cancer. Wayne A. Bardwell, Ph.D., at the University of California, San Diego, studied women in an eight-year (WHEL) trial of the effects of this diet on women who have had the disease. The team observed relationships between quality of life (QOL) and psychological symptoms, obesity, sleep quality, physical activity, stressful life events, pain, and GI symptoms. Thus, better QOL is associated with fewer psychological symptoms, less obesity, better sleep quality, more physical activity, less stressful life events, less pain, and less GI symptoms. Telephone counseling provided during the diet experiment did not result in changes in the women’s quality of life or social support. Because the team observed that the WHEL intervention (diet and associated counseling and cooking classes) did not have an effect on QOL, they concluded that any improvement in the WHEL Study intervention is due to changes in the diet, not due to improvements in quality of life (e.g., depression, social functioning). By matching women’s self-reports of what they ate with blood analysis, the research team found that women were accurately reporting their dietary intake. Another finding was that quality of life for early stage breast cancer patients could be improved with interventions targeting psychosocial symptoms, weight reduction, physical activity, sleep quality, and pain. Predictors of depression were the same for breast cancer survivors as for the general population of women, and were not related to cancer. Results from this study were published in Annals of Behavioral Medicine 24:S175 (2002).

Breast Cancer Prevention and Control Among Deaf Women.
Breast cancer programs are often inaccessible and inadequate for women who are deaf and hard of hearing. Little research has been done on deaf women and breast cancer. Barbara Berman, Ph.D., of the University of California, Los Angeles, and Heidi B. Kleiger, of the Greater Los Angeles Council on Deafness, Inc., conducted the first-ever exploratory research in this area. Using sign languages, they interviewed 69 deaf women over age 40, seven of whom had had breast cancer. The women interviewed included those deaf from birth and those deafened early or late in life. The research team asked about knowledge, perceptions and practices relevant to breast cancer, and preferences about breast health programs. They also asked about experiences with detection, treatment, and surviving breast cancer. The researchers are analyzing the data from these interviews, and will use it to craft excellent, tailored programs for deaf and hard of hearing women.

Efficacy of a Community Program in Increasing Access to STAR.
African American women have a higher death rate from breast cancer than other groups, and they are under-enrolled in clinical trials (testing on humans) of experimental medications to prevent breast cancer. Patricia Ganz, M.D., of the University of California, Los Angeles, and Kathleen Brown, M.D., of the Association of Black Women Physicians, Los Angeles, collaborated to increase awareness among African American women and African American women physicians of these clinical trials. African American women surveyed by the researchers raised issues that included lack of information about medical trials, the need for African American investigators to be involved in trials, fear of medication and side effects, distrust of research, and time constraints. African American women physicians said barriers to their recommending trials to their patients included the risk of experimental medications, time constraints, and lack of familiarity with available research trials. The researchers used survey results to provide continuing medical education on breast cancer preventive drug trials to members of the Association of Black Women Physicians. They also helped the association present education on this topic to over 150 women at African American churches.

Breast Health Project for Hmong Women and Men.
Marjorie Kagawa-Singer, Ph.D., R.N., M.N., at the University of California, Los Angeles, School of Public Health; Mary Anne Foo, M.P.H., at Orange County Asian & Pacific Islander Health Alliance; and Sora Tanjasiri, Dr.P.H., at the University of California, Irvine, found that culturally-tailored health education motivated Hmong American women to be more aware of breast cancer and obtain mammograms. Breast cancer is the leading causes of cancer death in Asian American and Pacific Islander women. Only about one-quarter of Hmong women have had mammograms. The research team conducted face-to-face interviews with 603 women before and after a breast cancer education program called Life Is Precious, which was presented to Hmong men and women in their language. The education program was done in Hmong homes, usually with the men and women in different small groups. Enlisting the support of Hmong men was an effort to capitalize on the Hmong cultural strengths of social support, family integrity and on Hmong decision-making styles. After the education, 25% more women in the Hmong communities had a mammogram, compared to only a 5% increase in the Hmong communities where no educational programs were held. There was also a measurable increase in knowledge about causes and prevention of breast cancer among women who received the educational program. This research resulted in a publication in Journal of Cancer Education 16(1):50-4 (2001).

A Network-Based Intervention for Chamorros in Southern California.
Chamorros are people indigenous to the Mariana Islands, including Guam and Tonga. Sora Park Tanjasiri, Ph.D., of the University of California, Irvine, collaborated with Lola Sablan-Santos, of the community organization Guam Communications Network, Inc., in Long Beach. The research team surveyed 422 Chamorro women in northern and southern California about their knowledge of and attitudes toward breast cancer, their social networks, and whether they practiced breast self-examination, had clinical breast exams, or had mammograms. The context for this work is that the breast is the most common cancer site for Tongan women. The research team trained Chamorro women to be lay breast educators, using a curriculum developed by the researchers that included a “bingo” card game to educate women in social settings. The team then followed up with a survey of women who had the training to see if it would make them more likely to get appropriate breast cancer screening. The team found low rates for all types of breast cancer screening: only 40% of respondents had ever performed breast self-examinations (BSE), 26% ever received a clinical breast exam (CBE), and 25% ever received a mammogram. Many misperceptions existed about breast cancer causes, signs, and symptoms, as well as the roll of screening in detecting pre-symptomatic cancers. It is clear from this study that much emphasis needs to be placed on improving early breast cancer screenings among Tongan American women, including comprehensive community education, culturally tailored and linguistically appropriate materials, and improved access to low-cost screening sites.

Breast Cancer Screening in Women Surviving Hodgkin’s Disease.
Women who had radiation treatment for Hodgkin’s disease face a risk for breast cancer 5.66 times that of the general population. Survivors of Hodgkin’s disease are also likely to be under age 50 when they are diagnosed with breast cancer. Steven L. Hancock, M.D., at Stanford University, found that telephone counseling about their risk motivated this group of women to have regular mammograms Other factors that led to getting regular mammograms were being married, having a job, being more concerned about breast cancer, and receiving an annual physical exam. The researchers also found that in spite of young women in this study having denser breasts, which make mammograms less effective for detecting cancer, mammograms were effective at pinpointing breast abnormalities for women who survived Hodgkin’s disease. This research resulted in a publication in Journal of Clinical Oncology 18(4):765-72 (2000).

Geographic Variation in Breast Cancer Stage at Diagnosis.
Women whose breast cancer is diagnosed before it has spread to surrounding tissue or to distant sites in the body have a better chance of surviving. Among California counties, despite a state-funded program that provides screening mammograms to low-income women, the percentage of breast cancer patients who are diagnosed at this early stage ranges from 40% to 71%. Pamela Davidson, Ph.D., at the University of California, Los Angeles, investigated how community-level factors influence the stage at which a woman’s breast cancer is diagnosed. She found that compared to white women, African American and Latina women were less likely to be diagnosed at an early stage. In addition women were less likely to be diagnosed at an early stage if they: were under age 65; lived in a neighborhood with low levels of education and high rates of female-headed households, poverty, and recent immigrants; lived in a county where fewer people had health insurance; or used a hospital that served few breast cancer patients. Women were more likely to be diagnosed at an early stage if they: were over age 65; lived in counties where more women had health insurance and had ever had a mammogram; or lived in counties with more primary care physicians and radiologists. This research, which can aid the development of effective community-level interventions, resulted in a publication in Cancer 103(5)922-30 (2005).

Effectiveness of Internet vs. Face-to-Face Support Groups.
Previous research has shown that when breast cancer patients suppress negative emotions, they have a worse quality of life and their cancer is more likely to progress. Morton A. Lieberman, Ph.D., of the University of California, San Francisco, and Mitch Golant, Ph.D., from The Wellness Community, a community organization in Santa Monica, compared Internet and face-to-face support groups led by mental health professionals. The overall findings were that there was no difference in efficacy between the two groups on measures of quality of life, depression, and anxiety. Both groups showed similar improvement. (However, the small sample size precluded the finding reaching statistical significance.) In additional work, the group found women in groups led by professionals expressed more negative emotions than women in groups led by non-professionals. The professional leaders encouraged the expression of anxiety, hostility, and depression because they believe expressing these emotions is therapeutic. The non-professional leaders, on the other hand, offered support and suggested fighting the cause of the negative feelings. When the researchers looked at the issue more closely, they found that women who expressed anger had a higher quality of life and less depression. Those who expressed fear and anxiety had a lower quality of life and more depression. Expressing sadness made no difference to quality of life or depression. These results suggest that expressing some negative emotions benefits breast cancer patients, while expressing other negative emotions does not. This research led to The Wellness Community Virtual Community, an Internet support and educational service for breast cancer and other cancer patients that receives 4,000 visitors per month. It also resulted in publications in Cancer 97(4):920-5 (2003) and 97(5) 1164-73 (2003), and Cancer Nursing 26(1):37-46 (2003).

Return to Work After Breast Cancer Surgery.
Diane R. Estrin, of the Women’s Cancer Resource Center, a Berkeley community organization, and Rani B. Eversley, Ph.D., of the University of California, San Francisco, investigated what helps—and what hinders—women returning to work after breast cancer surgery. The team found that women who had chemotherapy or who had symptoms of depression took longer to return to work. Latina women, low-income women and women with children at home all returned to work more quickly. Latina women had fewer years of education, less income, and were less likely to get paid time off than women from other ethnic groups. They also had more physically demanding work that involved lifting and stooping. Returning to work more quickly may put them at risk for complications such as arm swelling and fatigue that could ultimately affect their long-term ability to work. This research resulted in a publication in Oncology Nursing Forum 32(2):250-6 (2003).

Breast Cancer Survivorship: Partner’s Role in Recovery.
The transition from being a breast cancer patient on active treatment to being a survivor on long-term follow-up can be upsetting and disruptive. Beth E. Meyerowitz, Ph.D., of the University of Southern California, Los Angeles, investigated how partners’ reactions during this transition relate to patients’ quality of life, relationship adjustment, personal growth, and coping. Of 384 possible partners in this study, 182 did not take part, either because the breast cancer survivor didn’t want them to, or because they refused. The partners who did take part were coupled with breast cancer survivors who were more likely to be white, have higher income, refrain from using avoidance to cope, have more support from their partners, and have better general health. These findings provide evidence of possible biases in recruitment of partners for this type of study. Partners and patients generally reported good quality of life, good marital adjustment, low fear of cancer recurring, low stress, and moderate optimism. Partners of women who had mastectomies or chemotherapy had more difficulties than partners of women who had only part of their breast removed without chemotherapy. Partners perceptions of patients’ experience were mostly not accurate. Partners thought the patients’ fatigue was worse, and physical symptoms better, than the patients reported. Partners also believed patients were more afraid of recurrence than the patients reported. These results suggest areas where patients may feel misunderstood by their partners, and provide some insight into which partners may have greatest difficulty adjusting.

Assessing the Impact of Shame and Guilt on Recovery.
Shame is a negative evaluation of oneself as a whole person. Guilt is a feeling of having acted in a way that doesn’t meet social or moral expectations. Women with breast cancer may experience both, and these emotions could impact their bodies’ ability to respond well to stress. Janine Giese-Davis, Ph.D., at Stanford University, interviewed ten women with breast cancer using recently-developed methods to measure shame, guilt, embarrassment, and pride. Women spoke most of feelings of pride. They felt pride at accomplishments, such as giving to friends and family, completing a strenuous physical activity while recovering, or for being able to navigate the medical system. Women reported somewhat greater feelings of shame than guilt over the impact of breast cancer on their families. They also expressed shame over bodily appearance, interactions with physicians, and inability to function completely. When women talked about the impact of cancer on their sexuality, their feelings of guilt were slightly higher than those of shame. Other triggers of guilt included their inability to fulfill their roles with family and others, imposing on others when they were ill, or doing things they thought might have caused their cancer or could worsen their prognosis. Women reported being embarrassed by being seen without clothing in public following surgery, for forgetting things, and for not acting as they did in the past. The long term goal of this research is to understand the role of these emotions in recovery from breast cancer and to train therapists how to best intervene with women feeling shame or guilt.

Child’s Stress During Mother’s Treatment for Breast Cancer.
Little research has been done on the psychological impact of breast cancer on the patient’s children, or how the children’s reactions affect their mothers. Ellen Levine, Ph.D., M.P.H., and Dalia Ducker, Ph.D., at the California Pacific Medical Research Institute, San Francisco, investigated the reactions of teenagers whose mothers were being treated for breast cancer. Although they recruited for eight months in a wide variety of settings, they had difficulty finding mothers who were willing to participate. The team surveyed 17 women who had breast cancer and 23 teenage children of these mothers. The mother’s coping with breast cancer was significantly related to the child’s coping, and to the child’s depression and anxiety. The teenagers’ coping was related to their social adjustment and school performance.

The Functional Implications of Taxane-Induced Neuropathy.
Up to 60% of women who take the chemotherapy drugs paclitaxel or docetaxel, also known as taxanes, develop peripheral neuropathy. This condition is a loss of function of the arm and leg nerves. It causes numbness, tingling, pain and muscle weakness. Prior to this research by Meredith Edwards Wampler, B.H.S., at the University of California, San Francisco, it was known that diabetes-induced peripheral neuropathy could impair balance and mobility and also decrease quality of life. However, no research had been done on peripheral neuropathy caused by chemotherapy. Dr. Wampler found that women treated with taxanes for breast cancer, compared to women who hadn’t had the disease, had measurable peripheral neuropathy. The best test for this condition is the Total Neuropathy Score, but Dr. Wampler found that a less expensive and less uncomfortable test, the Modified Total Neuropathy Score, was just as valid in measuring the women’s impaired balance, impaired mobility and impaired quality of life. Physicians can use this score to identify women who can benefit from physical therapy. Seventy percent of the women with peripheral neuropathy also had pain, but pain was not related to measurements on the Modified Total Neuropathy Score. Therefore, physicians need to assess pain and provide pain relieving treatment separately from chemotherapeutic regimen.

Constructed Meaning and Stress in Breast Cancer Experience.
Jill L. Mitchell, M.A., at the University of California, Los Angeles, interviewed in depth 23 women whose breast cancer had spread to other parts of their bodies. The goal was to discover the different ways women give meaning to the experience. A number of themes emerged. Breast cancer affected these women’s sense of time. Some women perceived the disease as chronic rather than terminal. Family members, friends, and health care staff can silence women’s attempts to find meaning. The fears of women whose tumors have spread are different from those of women who have early stage breast cancer. There is a process of making peace with dying. Women’s psychological experience of cancer can change dramatically over the course of a year. In-depth interviews like those used in this study can be therapeutic. Ms. Mitchell also took saliva samples to measure the women’s stress levels. In future work, she will investigate whether it lowers a woman’s stress levels if she finds positive meaning in the experience of breast cancer that has spread.

Grants in Progress: 2005

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Decision Support in Rural Underserved North Coast Counties
Jeff Belkora, Sara O’Donnell and Julie Ohnemus
Mendocino Cancer Resource Center and Humboldt Community Breast Health Project

Socioeconomics and Ethnicity Affect Tumor Endocrine Status
Vinona Bhatia
University of California, San Francisco

Does a Peer Navigator Improve Quality of Life at Diagnosis?
Caroline Bliss-Isberg and David Spiegel
WomenCare and Stanford University

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

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

Reducing Disparities Among Korean American Women
Soo-Young Chin and Annette E. Maxwell
Education, Information & Research Center and University of California, Los Angeles

Weight Loss in Public Hospital Breast Cancer Patients
Roman Chlebowski
Harbor-UCLA Research and Education Institute

Impact of Breast Cancer and Its Therapy on Osteoporosis
Carolyn Crandall
University of California, Los Angeles

Correlates of Lymphedema Severity and Access to Intervention
Diane R. Estrin, Linda Wardlaw, and Rani B. Eversley
Womens Cancer Resource Center, Charlotte Maxwell Complementary Clinic, and University of California, San Francisco

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

The Impact of Structure on Quality of Breast Cancer Care
Katherine Kahn
University of California, Los Angeles

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

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

Determinants of Receiving Breast Cancer Treatment in the Underserved
Rose Maly
University of California, Los Angeles

The Cost of Breast Cancer in California
Wendy Max
University of California, San Francisco

Peer Mentors Promoting Breast Cancer Clinical Research
Michele Rakoff, John Link and Annette Maxwell
Breast Friends. Long Beach Memorial Medical Center, and University of California, Los Angeles

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

African American Women and Breast Cancer: What Works?
Carol Somkin and Priscilla Banks
Kaiser Foundation Research Institute and African American Committee on Cancer

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

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

Psychobiological Concomitants of Bereaved Women at Risk for Breast Cancer
David Wellisch
University of California, Los Angeles

Research Initiated in 2005

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Effect of Bright Light on Fatigue in Breast Cancer
Sonia Ancoli-Israel
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

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

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

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

Cost-Effectiveness of Breast MRI Screening by Cancer Risk
Allison K. Kurian
Stanford University School of Medicine

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

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

Kitchen Divas: Breast Cancer Risk Reduction for Black Women
Janette Robinson-Flint and Kimlin T. Ashing-Giwa
Black Women for Wellness and University of California, Los Angeles

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Partnership to Reduce Cancer Disparities in Spanish Speakers
Molly Bergstrom and Rena J. Pasick
Women’s Cancer Resource Center and University of California, San Francisco