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. It may also lengthen their survival time. 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

Perceived Support in the Work Place and Return to Work. 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, in a pilot study investigated problems women with breast cancer face after returning to work. The team surveyed 116 women who had undergone breast cancer surgery. Forty percent had changed jobs after surgery; 17% were terminated or laid off. Twenty-nine percent felt they were harassed on the job due to breast cancer. Average monthly income dropped from $1,812 before surgery to $1,167 after. Caucasian women were off work an average of 23 weeks, African American women an average of 37 weeks, and Latinas, 11 weeks. African American women were twice as likely as Caucasian women not to be working after one year. Women who had children at home, were enrolled in disability insurance or who received a mastectomy were more likely to take off more time from work. Latinas returned to work more quickly, even when their disease was advanced. Very few had disability benefits. These findings may be related to their immigration status. The results of this study provide the basis for a larger research study funded in 2001 by the CBCRP.

Effectiveness of Electronic Support Groups for Breast Cancer. Morton A. Lieberman, Ph.D., of the University of California, San Francisco, tested the feasibility of conducting professionally-led support groups for women with breast cancer over the Internet. Since rural women may be unable to take part in face-to-face groups, the research team recruited two-thirds of their study participants from rural areas. After taking part in online support groups during the 16-week experiment, women with breast cancer had significant decreases in depression, expressed more zest for life, saw new possibilities, deepened their spiritual lives, and had fewer negative reactions to pain they were experiencing. Women who dropped out of the groups had, at the onset, a low ability to contain their anxiety and suppress negative thoughts about cancer. Pain was also interfering more with their lives. Online support groups are less likely to help women with these characteristics. The researchers found that online support group leaders need to intervene in ways different from those face-to-face leaders use. Online support groups don't provide any cues from tone of voice, body language or facial expression, so leaders must more often ask for clarification, express their own reactions, help the group focus on one issue at a time, direct members to interact with each other, and use metaphor and anecdotes to draw out members' feelings and reactions.

Quality of Life

When new breast cancer treatments are tested on humans, the U.S. and Canadian governments now require researchers to find out not just how the treatment works against the disease, but how it affects the patient's quality of life. Researchers and practicing physicians are also paying more attention to quality of life. Both developments have come since the upsurge in breast cancer activism over the past decade. Quality of life includes psychological well-being (such as anxiety, depression, mental functioning); physical functioning (such as the ability to work, play and be selfsufficient); bodily symptoms (such as pain, premature menopause, hair loss, nausea); social relationships, and a general sense of well-being that includes spirituality. For some patients, especially the elderly, quality of life is as important as added years of survival. QOL is measured by having the patient fill out a questionnaire.

Research in Progress

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 in the survey. 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 drafted questionnaires for both women and physicians, and begun designing a database to analyze future data. Next, they will hold focus groups to improve the questionnaires, recruit participants, and begin the telephone surveys.

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 treatment. The team is looking into changes in the immune system, as well as psychological and behavioral responses women have to breast cancer. They are collecting blood samples and questionnaires from women diagnosed with early-stage breast cancer—before, during, and after radiation treatment. The research team has recruited ten women so far, and plan to recruit more over the coming year. 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.

Communicating Breast Cancer Risk in Ethnically Diverse Women. Women can now take the chemotherapy drug tamoxifen to reduce their risk of breast cancer. Other preventive medications are likely to become available. Linda Lillington, R.N., D.N.Sc., at Harbor-UCLA Research & Education Institute, is investigating how best to communicate complex issues about breast cancer risk reduction. Patients need education to make informed decisions about risk-reduction therapy with their health care providers. Careful consideration must be given to individual risk factors and the potential risks and benefits of prescribed treatments. There are currently no educational materials that health care providers can use to effectively present quantitative information about recent breast cancer prevention results to ethnic minority women. Dr. Lillington is developing, and beginning to evaluate, educational materials written at a 6th-grade level and designed to give English-speaking and Spanish-speaking women at a public hospital a clear understanding of the risks and benefits of taking tamoxifen to reduce their risk of breast cancer. To date, the research team has held focus groups for health care providers, as well as separate groups for African American, Hispanic and Caucasian women. Preliminary results show that women over 50 feel less vulnerable to breast cancer and that women in their 40s often seek care because they know someone recently diagnosed with breast cancer.

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 recent publications also suggest that cognitive deficits may occur in women treated with high-dose or standard post-operative chemotherapy. Rebecca Rausch, Ph.D., at the University of California, Los Angeles, is investigating possible cognitive changes in four groups:

  1. Breast cancer patients receiving standard-dose adjuvant chemotherapy after surgery;
  2. Breast cancer patients treated with antiestrogen (tamoxifen) therapy after surgery;
  3. Breast cancer patients not treated with chemotherapy or hormonal therapy;
  4. Healthy women with no history of cancer.

Dr. Rausch is also investigating the relationship of any cognitive impairments to hormone changes induced by therapy, and assessing the role of factors such as menstrual history, age, educational level and tumor stage. Preliminary data suggests that women scheduled to undergo chemotherapy do not rate their memory differently from other individuals.

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, is investigating how to improve genetic counseling and testing services for women who may have inherited a higher-than-average risk for breast cancer. Using questionnaires and focus groups, the research team is aiming to discover the motivations, concerns and characteristics of women who seek genetic counseling and testing. The team will also measure the impact of counseling and testing on the women's perceptions of their risk of cancer, their concerns, the actions they take to reduce their risk, and their moods. Finally, the research team in investigating why some women for whom genetic testing is appropriate decide to get tested and others do not. To date, 275 women have taken part in the study, and 103 have agreed to participate in focus groups. Study results will allow health care professionals to provide more appropriate and responsive care to women who seek genetic counseling, and also educate health care professionals about the complex ethical, social, medical, psychological, and legal issues involved. Results may also lead to more appropriate referrals of women for genetic counseling and testing, ultimately contributing to the prevention and earlier detection of breast cancer.

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 high-risk women in the general population. Joy Melnikow, M.D., M.P.H., of the University of California, Davis, is developing a deeper understanding of how women at high risk of breast cancer weigh the risks and benefits of tamoxifen. She has developed an educational script, which includes a flip chart and color-coded beads to represent probability of risk, to be used to educate women at high risk for breast cancer about the potential benefits and risks of tamoxifen. After interviewing 183 white, Asian, Latina, African American and other women, Dr. Melnikow has found that women who are eligible to take tamoxifen greatly over-estimate their risk of getting breast cancer. After receiving the education developed for this study, the number of women who were inclined not to take tamoxifen increased from 28% to 49%.

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. Ninety-five partners of women with breast cancer have completed the first questionnaire, two months after the women complete treatment. Partners will also complete a second questionnaire at a later date. Understanding the role that partners play in patient adjustment will enable medical teams to provide couples with information to enhance quality of life and communication.

Improving Quality of Life in Older Women after Breast Cancer. Rose Maly, M.D., M.S.P.H., at the University of California, Los Angeles, has found that newly-diagnosed older and ethnic minority breast cancer patients are less likely to receive a wide range of breast cancer-specific information, compared to younger and white patients. The types of information covered in this study included books, videos, pathology reports, and information provided in conversations with physicians about tumor aggressiveness and chance of recurrence. Although they received less of this information, older and minority patients rate the informational sources and topics as more helpful than do white patients. In the general population, women who receive more information are more likely to have a lumpectomy rather than a mastectomy. Differences in the amount of information older and minority women receive may account for differences in the treatments they receive.

Alternative Support for Rural and Isolated Women in an HMO. Cheryl Koopman, Ph.D., Stanford University, and Mary Anne Kreshka, M.A., 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 workbook-journal developed in a pilot CBCRP study. They have enrolled 71 women in the study and are continuing to enroll more. 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.

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 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 are in the process of holding culturally-tailored breast health workshops with 451 of the women. The team is also including 300 Hmong men in the workshops. Workshop materials developed for this study include a flip chart, a brochure, a video, and a key chain made of beads that represent various sizes of lumps that can be detected by different forms of screening. After the workshops are completed, the team will assess the women for changes in breast health knowledge and attitudes.

Beliefs and Risks of Breast Cancer Among African Immigrants. Cultural beliefs affect women's health care behavior. Understanding cultural beliefs can help shed light on why some groups of women don't get early 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. Yewoubdar Beyene, Ph.D., of the University of California, San Francisco, is conducting a qualitative anthropological study. He has held in-depth interviews with 20 African immigrant women and held focus groups with 100. The goal is to identify culturally-specific factors that influence how African immigrant women in California understand breast cancer symptoms and perceive their risks, as well as how these beliefs create barriers to early detection. Data from this study suggests 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. Disability and disfiguring carry strong stigma that affects the whole family; 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. Small group discussions seem to be the best way to educate this population.

Breast Cancer Screening in Women Surviving Hodgkin's Disease. Women who 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, Palo Alto, 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. So far, 65 women are taking part in the study, and Dr. Hancock is recruiting more participants. A complicating factor is that many of the Hodgkin's disease survivors are under age 27, the minimum appropriate age for screening mammograms.

Research Initiated in 2001