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 have the highest quality of life. CBCRP research reflects the complexity of the non-medical aspects of breast cancer. Topics include: what aspects and types of support groups work best, the impact of cultural beliefs, how and in what ways the support of significant others is important, and how to help women in the 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. The CBCRP continues to encourage and support this research.

Research Conclusions

Beliefs and Risks of Breast Cancer Among African Immigrants.

Understanding cultural beliefs can help shed light on why some groups of women don't get early breast cancer detection services and tend to consult a doctor when their disease has progressed to later stages. Women diagnosed with breast cancer in Africa are, on average, a decade younger than their counterparts in this country, and the disease is most often advanced at the time of diagnosis. Over one million African immigrant women live in the United States, the majority in California. Yewoubdar Beyene, Ph.D., of the University of California, San Francisco, conducted a qualitative anthropological study, interviewing in depth 20 African immigrant women and holding focus groups with 100. The goals were to identify culturally-specific factors that influence how African immigrant women in California understand breast cancer symptoms and perceive their risks, and find out how these beliefs create barriers to early detection. Dr. Beyene found that immigrant African women do not generally feel comfortable with breast self-examination, even in private, because touching the breast is considered sexual. They often associate breast cancer with death. African immigrant women generally have little knowledge about treatments available when a diagnosis is made early. The most common consequence of breast cancer they mention and fear is mastectomy. Many Africans believe in reincarnation, and that a person who has body parts removed will return with those body parts missing. If a woman becomes disabled or disfigured, she and her whole family carry a strong stigma; therefore women with breast cancer never disclose their illness to others and have no social support outside of their families. The media and current guidelines are not reaching African immigrant women. Most women interviewed said that small group discussions are the best way to educate their population.

Social Support and Breast Cancer Control Among Latinas.

Nilsa Gallardo, Ph.D., at the University of California, Los Angeles, interviewed 20 Spanish-speaking low-income women, ages 20-74, who had recently been diagnosed with a breast abnormality that might be cancer. Women in this situation may be so upset that they do not seek follow-up treatment. Research has shown that social support can help women cope and can influence their decision to seek treatment, but this research has mostly been done on white, English-speaking women. This research was designed to understand better the role of social support for Latinas facing possible breast cancer. The women interviewed generally felt that seeking help for emotional distress outside the family was difficult, although the majority felt they could ask for financial help. Half the participants reported that female family members, such as daughters, provided more emotional support than husbands or sons. A substantial number of the women did not want to overburden their family or friends by asking for emotional support until they knew whether or not they actually had breast cancer. This study was an initial effort; additional research is needed to fully understand the role of social support among Latina women diagnosed with possible breast cancer. There is also a need for an appropriate Spanish-language questionnaire to assess social support and a need to develop and test interventions that can increase social support for this group of women.

Risk Notification for Women at High Risk for Breast Cancer.

Susan Stewart, Ph.D., at the Northern California Cancer Center; Joan R. Bloom, Ph.D., at the University of California, Berkeley; and Marion Lee, Ph.D., at the University of California, San Francisco, investigated telephone counseling for women whose sisters were diagnosed with breast cancer at age 50 or younger. These women have a higher-than-average risk for breast cancer. The research team first used a questionnaire to measure the women's psychosocial and emotional counseling needs. Then the team provided telephone counseling—designed to promote the women getting mammograms and provide a realistic assessment of their risk for breast cancer—tailored to each woman's needs. On average, women overestimated their risk of getting breast cancer by 25%, and the more they overestimated their risk, the greater their breast cancer worries. However, this didn't keep them from getting mammograms. Telephone counseling reduced the women's overestimation of their risk of getting the disease, and was most effective with women age 50 and older. Women who had counseling also increased their use of mammograms during the study. The research team then made this counseling process available over the 1-800-4CANCER help line. Callers also overestimated their risk of getting breast cancer by 25%, counseling was effective in reducing their overestimate, and the women increased their use of mammograms. This shows that the positive effects of this type of telephone counseling can be translated for use in help lines, even though the counseling session is shorter.

Communication, Content, and Impact of Genetics in Breast Cancer.

Deborah MacDonald, R.N., M.S., C.S., at the City of Hope National Medical Center, Duarte, investigated how to improve genetic counseling and testing services for women who may have inherited a higher-than-average risk for breast cancer. Using questionnaires from 451 women and focus groups involving 121 women, the research team examined the motivations, concerns and characteristics of women who seek genetic counseling and testing. The team found that genetic cancer risk assessment counseling appropriately impacts these women's perceptions of their risk of breast cancer, their concerns about breast cancer, their discussions about breast cancer with relatives who are at risk, and their decisions about risk-reducing strategies and genetic testing. Study results have allowed the research team to tailor counseling to provide more appropriate services at three City of Hope screening sites, which serve one of the largest groups of women seeking genetic counseling and testing in California. The research team has also used results from this study to educate health care professionals to provide more appropriate and responsive care to women who seek genetic counseling. The team expects that as they continue to present and publish their findings, more women will be appropriately referred for genetic counseling and testing. Women found to be at high risk for the disease could be targeted for preventive strategies, such as tamoxifen therapy. This could help reduce the risk these women face and improve their quality of life.

Tamoxifen Prevention: Is it Acceptable to Women at Risk?

The chemotherapy drug tamoxifen has been shown to reduce the incidence of breast cancer in women at high risk for the disease who have been enrolled in clinical trials. However, numerous concerns remain about tamoxifen's potential adverse effects and the drug's benefits for highrisk women in the general population. Joy Melnikow, M.D., M.P.H., of the University of California, Davis, investigated how women at high risk of breast cancer weigh the risks and benefits of tamoxifen. She developed an educational script, which includes a flip chart and color-coded beads to represent probability of risk, and used it to educate women at high risk for breast cancer about the potential benefits and risks of tamoxifen. The team interviewed 255 white, Asian, Latina, African American, and other women who all faced a higher-than-average risk of breast cancer. They found that these women greatly overestimate their risk of getting breast cancer. The women, on average, rated their 5-year risk at 33%, while the estimated risk according to National Cancer Institute guidelines was only 2.8%. After receiving the education developed for this study, the number of women who were inclined to take tamoxifen (18%) did not change; however, the number disinclined to take tamoxifen increased from 28% to 49%. If women have a realistic estimate of their risk for breast cancer, they can make better decisions about whether to take tamoxifen. This could reduce the number of women taking the drug who would not benefit from it.

Do Community Cancer Support Groups Reduce Physiological Stress?

Research has shown that women with breast cancer benefit from support groups run at Stanford University. David Spiegel, M.D., at Stanford University; Carol Kronenwetter, Ph.D., at Cancer Support Communities, San Francisco; and Mitch Golant, Ph.D., at The Wellness Community, Santa Monica, investigated whether community support groups are providing benefits comparable to those run in a university setting. The team evaluated the strengths and weaknesses of two community support groups run by The Wellness Community and Cancer Support Communities, comparing them with Stanford's Supportive-Expressive group therapy. Stanford groups are run by trained professionals based on a well-researched theoretical model. The Wellness Community Groups are also run by trained professionals; the theoretical orientation emphasizes decreasing unwanted isolation and increasing the women's ability to be effective in their lives. The Cancer Support Communities groups are run from the grassroots by women who have had breast cancer; they emphasize compassionate support for women with the disease, regardless of the women's treatment decisions. Women participating in the community groups changed at about the same level over four months as women in the Stanford group in five ways: fewer depression symptoms, fewer trauma symptoms, better social support, better perception of ability to be effective in life, and post-traumatic growth. The Wellness Community has six California locations and other sites around the US. It is therefore encouraging that women in more widely available community groups benefit at the same rate as women in the well-researched Stanford groups.

Research in Progress

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. The team will also look at the women's use of dietary supplements and the role that hot flashes—a common problem after breast cancer treatment —have on how women feel and function. So far, the team has found that younger women see diet as associated with mental health, while older women see diet associated with physical health. Over the coming year, the researchers will analyze their data, which they collected from a 6-year study of over 3,000 women called the Women's Healthy Eating and Living Study.

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, Inc., are conducting the first-ever exploratory research. The team is using signed languages of the deaf to interview 70 deaf women over 40 about their knowledge, behavior, and preferences about detection and other breast health practices. The research team has completed 15 interviews and will use information from this study to craft excellent, tailored breast health and breast cancer programs for deaf and hard-of-hearing 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. Juliene Bower, Ph.D., at the University of California, Los Angeles, is investigating factors that contribute to fatigue during radiation treat- ment, 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. The research team has recruited 28 women so far and completed gathering data on 20 of the women. Over the coming year, the researchers plan to recruit more women to the study and analyze their data. 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.

Efficacy of a Community Program in Increasing Access to STAR.

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. The goal is a tested method to increase African American participation in these trials. From focus groups, interviews and a survey, they have 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 black women physicians in April 2002, and will hold an educational presentation for African American women in the community.

Breast Cancer Screening in Women Surviving Hodgkin's Disease.

Women who have had radiation treatment for Hodgkin's disease have a risk of breast cancer 5.35 times higher than the general population. Survivors of Hodgkin's disease also get breast cancer at younger ages. Steven L. Hancock, M.D., of Stanford University, is examining how being notified of this increased risk emotionally impacts survivors of Hodgkin's disease. He is also evaluating whether the women are getting breast cancer screening, and investigating whether telephone counseling helps decrease the emotional impact of learning about being at high risk and increases the women's rates of screening for breast cancer. Finally, he is investigating whether getting frequent mammograms does benefit these women. The research team is in the process of enrolling 470 women who have received radiation therapy to treat their Hodgkin's disease before age 35, with treatment ending at least five years ago.

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 has surveyed 552 Hmong women in three communities to assess current community practices, breast cancer screening rates and breast health resources. They held culturallytailored breast health workshops with 327 of the women and also 321 Hmong men. They surveyed the original 522 women after the workshops to determine whether the workshops change their breast health knowledge and attitudes. The researchers are now analyzing their data.

Breast Cancer Prevention: The Views of Women and Physicians.

Celia Kaplan, Ph.D., of the University of California, San Francisco, is investigating how doctors advise their patients about breast cancer risk, and the knowledge, attitudes, and practices of women and physicians with regard to breast cancer prevention. She is conducting a telephone survey of 1,200 women ages 40-75, from four ethnic groups, who have recently had mammograms. Women at high and low risk of breast cancer from each ethnic group will be included. Dr. Kaplan is also surveying 1,000 randomly selected Bay Area physicians about their views on obstacles to breast cancer prevention. The research team has completed telephone surveys in Spanish and English with 88 women and has received completed questionnaires from over 920 physicians. They have begun entering data into their database. Next steps include telephone surveys with more women, adding a Cantonese version of the survey, and data analysis. Findings from this study could help improve patient-physician decision-making and communication about breast cancer prevention.

Alternative Support for Rural and Isolated Women in an HMO.

Cheryl Koopman, Ph.D., of Stanford University, and Mary Anne Kreshka, M.A., of Sierra Nevada Memorial Hospital Cancer Center, are investigating a support alternative for women with breast cancer who are psychologically, socially, or geographically isolated. The team has adapted a workbookjournal developed in a pilot CBCRP study. They have enrolled 151 women. So far they have found that at the outset, over 63% of the women are clinically depressed and 10% are experiencing post-traumatic stress syndrome. The research team is assessing the women three and six months after diagnosis, to determine whether receiving the workbook-journal reduces the women's distress and increases their coping skills, compared to women who do not receive the workbook-journal. The team will also examine characteristics of women who benefit most from the workbook-journal.

Child's Stress During Mother's Treatment for Breast Cancer.

Ellen Levine, Ph.D., of the California Pacific Medical Center Research Institute, San Francisco, and Dalia Drucker, Ph.D., of the California School of Professional Psychology, Alameda, are investigating how teenagers from various ethnic groups react emotionally and cope with their mothers being treated for breast cancer. The team will investigate factors that might influence the teenager's reactions, including the severity of their mother's illness, the intensity of side effects from her treatment, increased household responsibilities the teenager might have to take on, and the teenager's social support. The team is also looking at how the teenager's reaction affects the mother's quality of life. The researchers have developed a method for interviewing teenagers and are recruiting teenagers and their mothers for the study.

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 developed a Web site, trained facilitators, and recruited women with breast cancer for Electronic Support Groups initiated by the researchers. The researchers have also investigated Internet breast cancer news groups set up by other organizations. They have found that these groups have potential for helping women with breast cancer and are conducting more research on the news groups' effectiveness.

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. She has developed, designed, and printed questionnaires. So far, 174 partners of women with breast cancer have completed the first questionnaire 2 months after the women complete treatment; 119 have completed a second questionnaire six month's after the women's treatment ends. Preliminary data shows that women with breast cancer and their partners report good quality of life, marital adjustment, and mood after treatment ends. However, partners are only moderately accurate in judging whether the women with breast cancer experience fear of recurrence or disruptions due to fatigue.

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. Some 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 four groups. They are:

  1. breast cancer patients receiving standard-dose adjuvant chemotherapy after surgery,
  2. breast cancer patients treated with anti-estrogen (tamoxifen) therapy after surgery,
  3. breast cancer patients not treated with either of these two therapies, and
  4. age-matched healthy women with no history of cancer.

Before and after treatment, the women are given a battery of tests that asses 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 women who were going to have chemotherapy were more confused and nervous before treatment than those who were going to receive tamoxifen, and that this was reflected on objective memory test scores. After treatment, the women who thought they were having memory and attention problems have been shown to have them on objective cognitive tests.

A 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, Inc., 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 who have screening mammograms and clinical breast exams. The research team has identified all Chamorro women age 50 years and older in Los Angeles and Orange counties, where the educational intervention will take place, and also in three northern California counties, where the women will be part of a comparison group that does not receive any education. So far, 60 Chamorro women have been recruited for the study. The researchers have designed the survey they will use to test the effectiveness of diffusing information through lay health leaders and held a community kickoff event to promote the study in the Chamorro community.

Research Initiated in 2002

Constructed Meaning and Stress in Breast Cancer Experience.

Jill L. Mitchell, M.A., at the University of California, Los Angeles, will interview 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 will also look at how the meaning changes over time, how each woman constructs meaning, and how the meanings women give to breast cancer are related to a physiological measure of the stress they experience.