Sociocultural, Behavioral and Psychological Issues Relevant to Breast Cancer
While we search for new prevention and treatment strategies, we cannot ignore the social and cultural context in which women who are faced with breast cancer live and make decisions. These aspects of human life influence health-related behavior, quality of life, and the biological response to breast cancer. Understanding these aspects will help us to further reduce the human cost of breast cancer in California.
Research Conclusions
Karyn Angell, Ph.D. of the Stanford University School of Medicine investigated whether social stress and social support influence a woman's delay in seeking treatment for symptoms of breast cancer. Results from her postdoctoral study revealed that women who experience the death of a parent or close family member during the year before diagnosis are over 7 times more likely to delay treatment for breast cancer, and women with severe chronic stressors of two or more years duration are 4 times more likely to delay treatment. The presence of close friends or relatives in whom a woman can confide does not predict less delay in seeking treatment. However, women whose social network includes people who are critical or demanding are 2.5 times more likely to delay treatment for their breast cancer. These results suggest that even though a woman may know about symptoms of breast cancer and have access to medical care, her decision to seek medical care for herself is strongly influenced by the social and emotional demands of close friends and family members. Thus, this study, (which should be replicated with a larger and more ethnically diverse group of women) points to the importance of a woman's social environment in affecting the way she takes care of herself. We cannot ignore the role of a woman's social network in our treatment and prevention efforts.
Long-term survival: Socio-cultural, behavioral, and psychological factors
People have suspected for some time that stress affects well being, but new evidence suggests that expression of stress-related emotions might also affect length of survival in cancer patients. Janine Giese-Davis, Ph.D. of Stanford University coded the emotional expression and talk-time from videotape as women participated over time in Dr. David Spiegel's supportive-expressive group for metastatic breast cancer. Her preliminary results indicate that the mean survival time is doubled for women who do not constrain anger (3.7 years compared with 1.8). This is the first behavioral study in a relatively naturalistic setting which links bottling up anger with shorter survival. It appears also that women with a healthy, responsive, stress-hormone (cortisol) level benefit from the group intervention by living longer if over time in the group they 1) increase the duration of moments of genuine positive emotional expression, particularly affection, or 2) express longer moments of direct anger, fear, and sadness. The data also suggest that women with a flat or unresponsive stress hormone level do not improve their survival through emotional expression in the group. They appear rigid in their emotional coping style in a way not modified by the group. These results indicate that the physiologically unresponsive women need either an additional or quite different kind of therapy.
Mary Anne Kreshka, at Sierra College in Nevada City and Cheryl Koopman, M.D., Ph.D. of Stanford University used CBCRP's CRC pilot award mechanism to form a collaborative partnership to investigate whether a workbook-journal could help fill a social and psychological support need experienced by many women in rural California. Based on focus groups and the psychological literature on the subject, they developed the journal, entitled “One in Eight,” which addresses such topics as how to relate to doctors and medical technicians, how to talk to family and friends, and how to cope with hair loss, energy loss, and other side-effects of chemotherapy and other issues important to newly diagnosed breast cancer patients. They found that women who received the journal showed a significantly greater reduction in their traumatic stress symptoms related to having cancer compared with women who did not receive it. These women also experienced significantly greater increases in fighting spirit toward having breast cancer as well as greater decreases in feeling fatalistic regarding their breast cancer. The partnership was able to build on this experience and receive a full CBCRP CRC award to study women who live in urban areas but who nonetheless may be isolated for reasons of disability, age, income, and other factors.
Decision-making and Issues of Genetic Testing
Susan Stewart, Ph.D., Marion Lee, Ph.D., and Joan Bloom, Ph.D. of the Northern California Cancer Center, the University of California, Berkeley and the University of California, San Francisco, respectively, are conducting a study to test a telephone counseling strategy for women that are at higher than average risk for breast cancer. During the first year, the multi-disciplinary, multi-ethnic research team designed an assessment tool which will assist the telephone counselor to understand the psychosocial and emotional needs of the women who will be involved in the study. Previous research has found that most sisters of women who have had breast cancer will over-estimate their own chances of having a breast cancer diagnosis, perhaps resulting in increased anxieties and worries. To this end, the team has developed counseling messages that will support and promote positive breast health behavior and reduce both system and psychosocial barriers to an affirmative approach to breast health care.
Nangel Lindberg, Ph.D. a postdoctoral fellow at the University of California, Los Angeles is studying factors among high-risk women that affect their attendance to preventive programs and their compliance with medical recommendations. During the first year, Dr. Lindberg has begun to characterize the clinic population. Initial survey results indicate that about half of participants report having made minimal to moderate changes in their daily routines as a result of a relative's breast cancer, but no changes in their long-range life plans. 40% reported minimal to moderate changes in their long range plans, and over 7% reported extensive life changes as a result of their relative's illness. Many clinic patients have seen the results of their relative's surgery; among them, about half described that experience as traumatic; while most feel they have adjusted, a third report having continuous feelings of distress. One third of patients report slight to extreme changes in their own body image, including changes in sexual functioning, as a result of their relative's breast cancer. Participants experience minimal levels of anxiety about getting a pap smear, but significantly more about obtaining a mammogram or performing breast self-exams. This anxiety is significantly higher for women whose relative has died from breast cancer.
Recently Initiated Research
Seven studies look at various dimension of social support. The first three address social support related to issues of education and screening in special populations: African immigrants, Hmong Women (and Men), and survivor's of Hodgkin's disease. Yewoubdar Beyene, Ph.D. of the University of California, San Francisco will conduct an anthropological study to explore differences in perceived risk of breast cancer and related cultural factors in a sample of African immigrant women in order to make recommendations about what would and what would not be appropriate mechanisms to employ when interacting with African immigrant women about breast cancer risks, and early detection. Marjorie Kagawa-Singer, Ph.D., R.N., M.N., of the University of California, Los Angeles, Mary Anne Foo, M.P.H. of the Orange County Asian & Pacific Islander Health Alliance and Sora Park Tanjasiri, Dr.P.H. of the University of California, Irvine (co-PIs) will investigate whether, and what elements of, a culturally-tailored health promotion would best motivate the hard-to-reach Hmong population to be more aware of breast cancer screening issues and obtain mammograms. Steven Hancock, M.D. of Stanford University will examine: the emotional impact of being notified of an increased risk of cancer due to prior treatment for Hodgkin's disease; whether risk notification leads more women to screening behaviors; and whether mammograms contribute meaningfully to identifying early, curable tumors in younger Hodgkin's survivors (who have a higher-than-average risk for breast cancer). Nilsa Gallardo, Psy.D. of the University of California, Los Angeles will look at the manner in which Latinas, who have been diagnosed with a breast abnormality suspicious for cancer, define and use social support during the period in which they are undergoing treatment and awaiting a final diagnosis. By developing an assessment tailored to Latina women, she hopes to measure the impact of social support on psychological well-being, and provide clinicians with information useful in identifying women at risk for emotional distress and potentially negative health-seeking behaviors. Diane Estrin of the Women's Cancer Resource Center and Rani Eversley, Ph.D. of the University of California, San Francisco (co-PIs) will look at social support issues in the workplace. At present, little is known about: the relationship between the responsiveness of the workplace to women's needs after undergoing surgery and women's ability to return to work; possible ethnic differences in this factor (African American women appear to encounter more difficulties in their ability to return to work, as measured by the rate of return, three-months post surgery); or, about the relationship between return to work and quality of life among women who have undergone breast cancer surgery, or how this differs among ethnic groups.
Matthew Cordova, Ph.D of Stanford University and Morton Lieberman, Ph.D. of the University of California, San Francisco will look at organized support groups. Dr Cordova is interested in which specific aspects of the therapeutic group support process are the most important, especially among a group of women who have had some prior psychological trauma; Dr. Lieberman will explore the feasibility and effectiveness of the online support groups for women with breast cancer which are becoming more popular. Three other studies, those of Jay Azarow, Ph.D. of Stanford University, Beth Meyerowitz, Ph.D. of the University of Southern California and colleagues, and Cheryl Koopman, M.D., Ph.D. of Stanford University and Mary Anne Kreshka (co-PIs), will look at the personal and familial dimensions of support. Dr. Azarow will examine how it is that many women with breast cancer are able to elicit a commitment to the creative re-examination and pursuit of what is subjectively most important in their lives, and whether the ability to find positive meaning in illness is, in fact, a key predictor of psychological well-being and improved quality of life. Dr. Meyerowitz and colleagues will investigate how partners' reactions during the immediate post-treatment period relate to patients' quality of life, relationship adjustment, personal growth, and coping. With support from federally-supported research, they also intend to develop and evaluate a brief videotape intervention to prepare women for the transition from treatment to survivorship and to help partners understand the difficulties facing patients at the completion being of treatment, so that their partners will be more likely to be able to provide helpful support. Koopman and Kreshka will also explore efficacy in self-support, specifically the extent and effectiveness of a workbook journal developed in a previous CBCRP study. Women who may be psychologically, socially, or physically isolated will be targeted-an extension of the geographic isolation studied in the previous study. Finally, Debra MacDonald, R.N., M.S., of the City of Hope National Medical Center and Joy Melnikow, M.D., M.P.H. of the University of California, Davis will examine how best to support women in personal decision-making, specifically with respect to cancer-risk assessment and risk-reduction. Dr. MacDonald will endeavor to learn more about women of diverse socio-economic status who are seeking genetic counseling. She will compare among women appropriate for counseling, those who choose to undergo counseling and and those who don't, measure impact of counseling, with the aim of helping clinicians in referral decisions. Dr. Melnikow intends to develop a deeper understanding of how women eligible to take tamoxifen prophylaxis weigh risks versus benefits in their decisions.
