Dialogue with Breast Cancer Survivors

Institution: San Francisco State University
Investigator(s): Grace Yoo, Ph.D. -
Award Cycle: 2006 (Cycle 12) Grant #: 12MB-0180 Award: $23,995
Award Type: Joining Forces Conference Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

Initial Award Abstract (2006)
Non-technical introduction to the research topic: It is estimated that in 2005, 19,240 African American women were diagnosed with breast cancer. Survival rates differ among ethnic groups; notably African American women have a lower 5-year survival rate compared to Caucasian women and this gap is widening. Part of this gap is due to the fact that African American women are more likely to be diagnosed at a later stage compared to Caucasian women. In addition, poverty and mistrust of the medical system may result in poor standards of care. While not all African American women are low income at diagnosis many are, and others become poor because of lack of health insurance and the cost of medication/surgery.

African American women have been found to gain significantly more weight during treatment compared to other ethnic populations, and body weight and weight gain has also been associated with increased risk of breast cancer recurrence and increased risk in all-cause mortality. Many African American women also have low knowledge of breast cancer risk, benefits of treatment, etc. and this impedes them in from being active in their own care.

The question(s) or central hypotheses of the research: The primary aim of this retreat is to dialog with breast cancer survivors, practitioners and researchers about the needs of African-American women with breast cancer who live in the San Francisco Bay Area. Our hypotheses are:
ēIt will be feasible to develop a weekend symposium for breast cancer researchers, clinicians, and African American survivors?
ēThe symposium will educate patients, practitioners, and researchers about the challenges that African American women with breast cancer face.
ēAfrican American women from the Bay Area community will give researchers insight into how to design an interesting and feasible multi-modal intervention that includes exercise, to address the problem of weight gain during chemotherapy treatment.

The knowledge gained from the retreat will be used to apply for NIH funding to study the benefits of interventions designed as a result of this conference. In addition it is hoped that the knowledge gained by the survivors will help them to become more active in their own treatment and to educate other survivors.

The general methodology: The symposium will include 32 members from Sisters Network and other African-American women with breast cancer that might not yet be part of the group. We also will also invite leading breast cancer researchers from the University of California, San Francisco (UCSF) Comprehensive Cancer Center and San Francisco State University (SFSU) to share their findings, dialogue and to work on future collaborative research projects with other researchers and women from the Sisterís Network. The retreat will take place, Friday-Sunday, Aug. 25-27, 2006. The sessions will last for 90 minutes and will include a 20-minute researcher/clinician/survivor dialogue, with the remaining 30-45 minutes devoted to group discussion. Each group will have a note-taker that will summarize the results of the session. Proceedings from the conference will be published on the SFSU/UCSF RIMI grant website.

Topics of discussion are: treatment and diagnostic issues; health disparities, specifically those facing African-American women; benefits of exercise; environmental health and breast cancer; spirituality and social support; and social services for women with breast cancer.

Innovative elements of the project: This symposium is innovative in that it invites African American breast cancer survivors to be full partners in the planning and participation. They will be a vital part of the symposium, and they will be invited to share their views and experiences as well as hopes for further psychosocial interventions. We intend for this symposium to be an education for the researchers/clinicians, as well as the survivors.

Advocacy involvement and human issues: The advisory board consists of survivors and advocates, as well as researchers. They include representatives from the Bayview Hunterís Point, Marin Breast Cancer Watch, and Sisterís network. As stated above, the symposium is dedicated to reducing the burden of breast cancer for African American women.

Final Report (2007)
The primary goal of this application was to conduct a retreat to dialogue with breast cancer survivors, practitioners and researchers about the needs of African-American women with breast cancer who live in the San Francisco Bay Area. The goal was to educate the survivors as well as educate the researchers/clinicians about issues and problems faced by African American women with breast cancer.

The specific aims of this symposium included:

Forty four African American breast cancer survivors participated in this symposium. Twenty researchers/clinicians, providers and advocates representing the University of California Comprehensive Cancer Center, San Francisco State University, African American organizations, and other bay area cancer organizations participated in this event. We were concerned that African-American breast cancer survivors might be hesitant in sharing openly their needs as breast cancer survivors, but that was not the case. The participants were open and willing to talk about a variety of subjects to researchers, clinicians/providers and advocates. Another barrier was time. Our dialogue between survivors and researchers covered a wide range of issues such as environmental health, sexuality, exercise, nutrition, spirituality, psycho-social needs, and clinical/diagnostic concerns which left little time for women to relax.

Overall, the symposium was well-received by survivors, researchers and clinicians. Women received not only valuable current research information on breast cancer, but were also active in sharing with researchers and other breast cancer survivors on both their physical and psychosocial needs. Breast cancer survivors had significant decreases in distress at the end of the symposium.

We received a high interest in starting an intervention for African American breast cancer survivors. Based on the reviews from the retreat we then designed with Ms. Bishop of Sisters Network an eight-week diet/exercise intervention. Eight survivors participated and we found increases in physical, functional and overall well-being. We also found decreases in anxiety, anger, and overall distress, with an increase in vigor. Fruit and vegetable intake increased, and for some women fat intake decreased. Overall participants did maintain some form of physical activity at least three times a week for 15-20 minutes. During the group walk, several participants stated that walking as a group motivated them to walk a longer distance.

The findings of the effectiveness of the symposium were presented at the 2007American Psychosocial Oncology Meetings in Austin, Texas (Levine E, Yoo G, & Lynn B, 2007). We are currently searching for funding to conduct another symposium this fall for African American survivors to focus on spirituality, nutrition, exercise and psycho-social concerns. In addition, we are also revising a proposal for a longer intervention (12 week) for African-American breast cancer survivors that will focus on diet and exercise changes and will promote healthy behaviors.

Symposium Abstract (2007)
Purpose: To establish a dialogue between researchers/clinicians and African-American breast cancer survivors. Methods: Forty-four African-American breast cancer survivors participated in a three-day retreat, meeting with cancer clinicians and researchers. Topics included sexuality, environmental causes of cancer, quality of life, spirituality, exercise, and treatment issues. The average age of the women was 61 years with a range from 43-85 years. Twenty-seven percent were married or partnered, 14% were single, 23% divorced and 14% were widowed. Sixteen women had lumpectomies and 17 had mastectomies. Pre and post distress, family, physical, practical, and spiritual concerns and confidence that they could cope with the concerns were compared.

Results: The most common concerns were: finances, anxiety, worry, memory, fatigue, and sleep. There was a significant decrease in distress at the end of the retreat (t=3.77, p=.001). There were no differences in concerns or confidence. The women were highly satisfied with the retreat, but wanted more time to talk to the clinicians and researchers. They found this was a time to ask the questions that they would not have been able to ask their medical professionals because of the time constraints.

Conclusions: The women enjoyed and found benefit from a short retreat, but may benefit from a longer intervention. They especially wanted more time to talk with the cancer surgeon about treatment issues, and wanted more discussion about sexuality.

Research Implications: This study showed that a retreat is feasible and valuable to African-American breast cancer survivors. Research on whether or not there are added benefits from a longer retreat as well as the effectiveness of retreats for other ethnic groups should be considered. Clinical Implications: The women had many concerns that could be addressed by doctors, nurses, psychologists and social workers. However, there should be enough time is a visit for the woman to ask her questions. Attention should be paid to the most common concerns. Discussions of the effects of breast cancer and itís treatment on the sexual lives of the women should also take place. Acknowledgement of Research Funding: This research was funded by the California Breast Cancer Research Program #12MB-0180.