Sociocultural, Behavioral, and
Psychological Issues: The Human Side

Until breast cancer can be prevented, understanding how best to provide psychological and emotional support will enable breast cancer patients to improve their post-diagnosis quality of life. It may also lengthen their survival time. CBCRP research reflects the complexity of the psycho-social aspects of breast cancer. Topics include: aspects and types of successful support groups; the impact of cultural beliefs; how, and in what ways the support of significant others is important; and how to help women transition back to normal life. All of this research is aimed at lessening the isolation, uncertainty, and fear experienced by women who are at high risk, newly diagnosed, or coping with treatment and post-treatment. Although there is more knowledge about how to help these women than there was a decade ago, much remains to be discovered and put into practice.

Research Conclusions

Two CBCRP grants studying the Sociocultural, Behavioral, and Psychological issues of breast cancer were completed in 2003.

Do Community Cancer Groups Enhance Well-Being? Matthew Cordova, Ph.D., at Stanford University, investigated how women with breast cancer who have had traumatic experiences earlier in their lives think and feel about their illness. The research team is also investigating whether and how several types of support groups can help these women who are at high risk for distress about their disease. The team found: (1) Women who believe more strongly that breast cancer threatens their lives and who have greater resources to deal with this threat may be more likely to experience a sense of personal growth. (2) Women who write about their cancer experience using more cognitive words and fewer emotional words report greater emotional distress. (3) Women who have higher confidence in their ability to manage their feelings about cancer are more likely to use a fighting spirit to decrease their emotional distress. Dr. Cordova is continuing this research, with the goal of improving support group services available to women with breast cancer in California. Results of Dr. Cordova’s studies have been published in Journal of Consulting and Clinical Psychology 2001 Aug; 69(4):706-11, Health Psychology 2001 May; 20(3):176-85, and Advances in Mind-Body Medicine 2001 Winter; 17(1):38-41.

Communicating Breast Cancer Risk in Ethnically Diverse Women.
To make informed decisions about taking the chemotherapy drug tamoxifen in order to reduce their risk of getting breast cancer, women need to know the risks and benefits of the medication and to carefully consider their own individual risk for the disease. Linda Lillington, R.N., D.N.Sc., at the Harbor- UCLA Research and Education Institute, conducted research to fill a need for educational materials that health care providers can use to present information about breast cancer prevention to minority women. The materials are written at a 6th-grade reading level and are designed to give women who speak English or Spanish a clear understanding of the risks and benefits of taking tamoxifen. The materials are based on extensive interviews with African American, Hispanic, and white physicians and patients. The educational materials have been evaluated by a panel of physicians and nurses and via focus groups with English- and Spanish-speaking women. Women who took part in the study made very positive comments about these educational materials, saying they wanted to share the information with other women and that they were going to make changes in their own lives to promote breast health.

Research in Progress

A number of ongoing CBCRP grants in the topic of Sociocultural, Behavioral, and Psychological Issues reported substantial progress in 2003.

Cognitive Changes after Adjuvant Therapy for Breast Cancer.
Many breast cancer patients who receive chemotherapy say that they suffer memory and concentration problems, even years after therapy, and previous research shows this may be true. Rebecca Rausch, Ph.D., at the University of California, Los Angeles, is investigating possible changes in attention and memory in breast cancer patients receiving standard-dose adjuvant chemotherapy after surgery and breast cancer patients treated with antiestrogen (tamoxifen) therapy after surgery. She is comparing these women’s memory functioning with breast cancer patients not treated with either therapy, and with age-matched healthy women with no history of cancer. Before and after treatment, the women are given a battery of tests that assess their mood, hormone-related behavior changes, quality of life issues, and aspects of memory and cognition processing. The women’s hormone levels are also measured. So far the team has found that nine months after chemotherapy, women had decreased performance on objective memory tests of verbal learning, compared to their performance before treatment. On timecoded learning tests, chemotherapy patients had lower scores than healthy women.

Mechanisms of Radiation-Induced Fatigue in Breast Cancer.
Fatigue is one of the most common side effects of radiation treatment, significantly disrupting the lives of women who receive this therapy. Little research has been done on radiation-induced fatigue, and women have few resources to help them manage this symptom. Julienne Bower, Ph.D., at the University of California, Los Angeles, is investigating factors that contribute to fatigue during radiation treatment, including immune system changes, as well as psychological and behavioral responses women have to breast cancer. Dr. Bower is collecting blood samples and questionnaires from women diagnosed with early-stage breast cancer—before, during, and after radiation treatment. So far, the research team has found that fatigue levels increase until treatment week 4, then decline after treatment is completed, but there is a lot of variation among individuals. This research could pave the way for the development of methods to reduce fatigue during radiation treatment and also may help identify women at risk for fatigue.

Impact of Breast Cancer and Its Therapy on Osteoporosis.
After women go through menopause, their bones can become weaker and smaller, which puts them at risk for osteoporosis. Carolyn Crandall, M.D., at the University of California, Los Angeles, is investigating whether women with breast cancer start out with stronger bones than women who don’t get the disease. She is also investigating whether survivors of breast cancer and women who haven’t had the disease lose bone mass at different speeds after menopause. Finally, she is investigating whether levels of hormones in the blood can predict the rate at which breast cancer survivors lose bone mass.

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. This is especially true for women who don’t get support from their intimate partners. Beth E. Meyerowitz, Ph.D., of the University of Southern California, Los Angeles, is investigating how partners’ reactions during this transition relate to patients’ quality of life, relationship adjustment, personal growth, and coping. Initial results show that the partners who decided to take part in this study were married to or living 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, have better general health, and have more sexual problems than the survivors whose partners didn’t participate. These findings provide evidence of possible biases in recruitment of partners for this type of study.

A Support Group Alternative for Rural and Isolated Women.
Cheryl Koopman, Ph.D., at Stanford University, and Mary Anne Kreshka, M.A., at Nevada Memorial Hospital Cancer Center, Grass Valley, are evaluating a community-based workbook-journal as an alternative to a support group for isolated and rural women with breast cancer. The workbook, “One in Eight,” was developed by breast cancer survivors in a rural community in partnership with academic researchers (Journal of General Internal Medicine 2003 Jul; 18(7):499-507). A pilot study funded by the CBCRP showed that the workbook reduced stress and improved coping for a small group of rural women. This larger study includes 151 women. At the beginning of their participation in this study, 64 percent of these women had clinical depression and 15 percent were suffering from post-traumatic stress. These figures are far higher than shown by previous studies, underscoring the need for methods to provide support to isolated and rural women. Results have also been published in Breast Journal 7(1):25-33.

Constructed Meaning and Stress in Breast Cancer Experience.
Jill L. Mitchell, M.A., at the University of California, Los Angeles, is interviewing 40 women with breast cancer that has spread to other parts of their bodies to find out the different ways women give meaning to the experience. Dr. Mitchell is also looking at how the meaning changes over time, how each woman constructs meaning, and how the meanings women give to breast cancer are related to the amount of the stress hormone cortisol their bodies are producing.

Effectiveness of Internet vs. Face-to-Face Support Groups.
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, are testing whether Internet support groups improve quality of life as effectively as groups that meet in person. So far, they have compared Internet support groups led by mental health professionals with Internet support groups led by women with no professional training. 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 nonprofessional leaders, on the other hand, offered support and suggested fighting the cause of the negative feelings. Research results have been widely published in several journals, including Cancer 97(5):1164-73 and Group Dynamics 6(4):267-76.

Women with Breast Cancer: Quality of Life and Dietary Adherence.
A diet that includes high amounts of vegetables, fruit, and fiber may protect women from recurrence of breast cancer. Wayne A. Bardwell, Ph.D., at the University of California, San Diego, is looking for personal characteristics that might determine who will stick with this type of strict diet and investigating whether the diet improves women’s mood, daily functioning, and relationships. Their data comes from a six-year study of over 3,000 women called the Women’s Healthy Eating and Living Study. So far, the team has investigated what caused depressive symptoms in women who had completed treatment for their breast cancer but had not yet begun the diet. Having a more serious diagnosis or a particular type of treatment did not lead to more depressive symptoms. Women who had more depressive symptoms were more likely to be pre-menopausal, younger, less optimistic, and more ambivalent about expressing negative emotions. They also were more likely to experience more pain and menopausal symptoms and have less social support. The fewer years that had passed since their breast cancer diagnosis, the more likely the women were to have depressive symptoms. This research resulted in a publication in Annals of Behavioral Medicine 24 (2002):S175.

Efficacy of a Community Program in Increasing Access to STAR (Study of Tamoxifen and Raloxifene).
Although African American women have a lower rate of breast cancer than other ethnic groups, their death rate from the disease is higher. African American women are under-enrolled in clinical trials to test whether chemotherapy can 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, are collaborating on methods to increase awareness of chemotherapy prevention trials among African American physicians and women. From focus groups, interviews, and a survey, they found that barriers include physicians not having time to discuss chemotherapy prevention with patients, physicians not being familiar with the available research trials, patients distrusting doctors and medical research, and researchers not getting information about previous trial results to the community. To break down these barriers, the research team held a Continuing Medical Education presentation for African American women physicians, developed an educational presentation on chemotherapy to prevent breast cancer, and trained a group of African American women physicians to give the presentation. The education presentation has been given at community churches; 94 percent of the women attending found it useful and 72 percent said they would now consider taking part in a medical research study.

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, are investigating whether culturally-tailored health education will motivate Hmong American women to be more aware of breast cancer and obtain mammograms. Breast cancer is among the leading causes of 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 presented to Hmong men and women in their language at home, usually with the men and women in different small groups. After the education, 25 percent more women in the communities had a mammogram, compared to only a 5 percent increase in the Hmong communities where no educational programs were held.

Breast Cancer Prevention and Control among Deaf Women.
Breast cancer and breast health programs are often inaccessible and inadequate for women who are deaf or 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, are conducting the first-ever7 exploratory research that we know of in this population. The team is using signed languages of the deaf to interview 70 deaf women (10 of whom are breast cancer survivors) over 40 about their knowledge, behavior, and preferences about detection and other breast health practices. The team has completed 49 interviews and will use information from this study to craft excellent, tailored, breast health and breast cancer programs for deaf and hard-ofhearing women.

Network-Based Intervention for Chamorros in Southern California.
Sora Park Tanjasiri, Ph.D., of the University of California, Irvine, is collaborating with Lola Sablan-Santos, of the community organization Guam Communications Network in Long Beach. The research team is testing the effectiveness of using lay health leaders to provide information about breast health and breast cancer to Chamorro women (Chamorros are people indigenous to the Mariana Islands, including Guam). The goal is to increase the number of Chamorro women receiving screening mammograms and clinical breast exams. The research team has recruited and surveyed 422 women. The team has trained six Chamorro women as lay health educators, and developed educational materials, focusing on materials for use with small groups of women in social settings.

Research Initiated in 2003

Six new projects studying the sociocultural, behavioral, and psychological issues of breast cancer began in 2003.
‘Art for Recovery’: Expanding Access for the Underserved. Kate Collie, Ph.D., at Stanford University, is investigating Art for Recovery, a program at the UCSF Comprehensive Care Center. The program provides support services for women with breast cancer based on visual creative expression. Dr. Collie will find out how well the program meets the needs of women with breast cancer, especially minority women, low-income women, and other women who have little access to breast cancer services. She will also investigate how to improve the program.

Assessing the Impact of Shame and Guilt in Recovery.
Janine Giese-Davis, Ph.D., at Stanford University, is investigating whether women may suffer unnecessarily from shame (about, for example, losing a breast or changes in their sexual feelings) and guilt (about, for example, spending less time with their children) after breast cancer treatment. She will use recently developed methods to measure shame and guilt, including coding of videotapes for head and body movements. She will also investigate whether these feelings impair the women’s relationships with family and friends, their interactions with health care professionals, or their recovery from breast cancer.

Interplay of Family Context and BRCA1/2 Testing.
Tests to see if a woman has genes that put her at greater risk for breast cancer have been available for years; however, few minority women have taken these tests. Beth Glenn, Ph.D., at the University of California, Los Angeles, will investigate women from five ethnic groups: white, African American, Hispanic, and two of the largest Asian subgroups in Los Angeles with the highest rates of breast cancer: Filipino and Japanese. She will study the role that families play in decisions about whether to have genetic tests.

Latinas and DCIS: Treatment Decisions and Quality of Life.
DCIS (ductal carcinoma in situ) is a small pre-cancerous growth in the breast. Some cases of DCIS will go on to become invasive breast cancer; others will not, but there’s no way to tell which is which, so many women with DCIS have breast surgery. Celia Kaplan, Ph.D., at the University of California, San Francisco, will survey 300 Latinas and 300 white women with DCIS to compare the way they make decisions about treatment, their quality of life, and the follow-up care they receive.

Late Cognitive and Brain Changes after Breast Cancer Therapy.
H. Rebecca Rausch, Ph.D., at the University of California, Los Angeles, is investigating whether the chemotherapy to treat breast cancer causes longterm loss of memory, attention, and concentration. Building on a study previously funded by the CBCRP that tested the mental function of breast cancer patients before they had chemotherapy or estrogen-blocking therapy, the research team will re-test the women two years later.

Feasibility of a Clinical Trial Matching Tool.
Only 3 percent of breast cancer patients take part in clinical trials. John Park, M.D., and Morton Lieberman, Ph.D., at the University of California, San Francisco, are investigating the effectiveness of a Web site (BCT.org) to recruit breast cancer patients and match them, according to their medical history, with appropriate research to test new treatments.