1. Breast Cancer in Marin The Power of Community Engagement Marin Community Forum October 15, 2009 Janice Barlow Executive Director, Zero Breast Cancer

2. Once upon a time… Once upon a time… Photo by Dennis Anderson

3. Community-Based, Participatory Research Community-based participatory research is a “collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community, has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities.” WK Kellogg Foundation Community Health Scholars Program

4. The Adolescent Risk Factor Study and the Development of Breast Cancer in Marin County (1997-2002) The Adolescent Risk Factors Study and the Development of Breast Cancer in Marin County (ARFS) was a community-based, participatory research study funded by the California Breast Cancer Research Program (1997-2001). It was a collaboration between Zero Breast Cancer, formerly Marin Breast Cancer Watch, and University of California, San Francisco. Researchers from the Northern California Cancer Center, Lawrence Berkeley National Laboratory and Kaiser also participated in the study. The study was designed to understand if adolescent and pre-adolescent exposures and experiences differ between women with and without breast cancer living in Marin County. Interviews were conducted with approximately 300 Marin County women diagnosed between July 1, 1998 and June 30, 1999 with breast cancer (cases), and 300 Marin County women without breast cancer (controls), matched for age and ethnicity.

5. Adolescent Risk Factors Study Physical development and changes Adolescent stress, family and social connections Detailed adolescent and contemporary socioeconomic factors Passive and active smoking Alcohol use Residency and migration Standard breast cancer risk factors Factors used for comparison between cases and controls included:

6. Factors that were not found to be significantly different between controls and cases: Having a first degree relative with breast cancer (20 % of controls and 18 % of cases) History of a non-cancerous breast biopsy Current socioeconomic status Age at first birth or pregnancy (mean of 25.1 for controls and 25.3 for cases) Use of hormone replacement therapy Height Health insurance status Frequency of pelvic exams and pap tests Lifetime number of years lived in Marin was 24.2 years for both groups The mean age first lived in Marin was 28.8 for controls and 29.6 for cases Adolescent Risk Factors Study

7. Resulting Differences Cases were more likely than controls to report: A high socioeconomic status before the age of 21 Four or more mammograms in 1990-1994 Giving birth without breastfeeding Being premenopausal Never having used birth control pills Having a lower highest body mass index Beginning drinking after age 21 Drinking on average two or more drinks per day Being raised in an organized religion Adolescent Risk Factors Study

8. Results suggest that both groups are at a high risk for breast cancer. Specific findings, in combination with the results of other recent prospective studies, suggest that decreased alcohol consumption and increased breastfeeding after childbirth - modifiable risk factors in adults - might help to reduce breast cancer risk. Adolescent Risk Factors Study

9. Spawned additional studies and peer reviewed publications using the ARF’s data: Recent changes in breast cancer incidence and risk factor prevalence in San Francisco Bay Area and California women: 1988-2004 (Clarke, et al) Risk Factors for Estrogen Receptor Positive Breast Cancer (Hwang, et al) Geographic Excess of Estrogen Receptor-Positive Breast Cancer: 2003 (Benz, et al) Risk factors for breast cancer in a population with high incidence rates (Adolescent Risk Factor Study): (Wrench, et al) Breast Cancer and Psychological Factors: Early Stressful Life Events, Social Support and Well-Being (Spiegel, et al) Validation of OncoVue in a Population of Women in Marin County: 2009 (Dalessandri et al) Laid the foundation for bringing in funding for and community participation in additional research: Personal Environmental Risk Factor Pilot Marin Environmental Data Study The Marin Women’s Study Cancer Clustering for Residential Histories Bay Area Breast Cancer and the Environment Research Center Pathways: Prospective Study on Breast Cancer Survivorship Building Research and Community Capacity

10. Targeted Dissemination of Research Targeted Dissemination of Research Adolescent Prevention Risk Reduction and Education Program “I did learn the environment can have a large effect on breast cancer” “It’s really important to convey this information on risk factors so we can make better choices, like how to take care of your body and how healthier choices can benefit you”

11. Incidence Rates: Invasive Breast Cancer Marin County Incidence Rates: Invasive Breast Cancer Marin County Influence of revised estimates on previous observations from 1990’s

12. Newspaper Headlines in 2002 Marin’s Breast Cancer rate jumps 20% Unseen killer stalks Marin The new breast cancer hot zone What’s killing the women of Marin County? Study: Is Marin County carcinogenic? Cancer cluster Is there a link between the environment and breast cancer? California’s breast cancer blight Marin’s breast cancer mystery?

13. The Bay Area Breast Cancer and the Environmental Research Center Windows of Susceptibility Breast Development In utero Puberty PregnancyMenopause Lactation

14. Community Outreach & Translational Cores Janice Barlow Zero Breast Cancer Bay Area Breast Cancer and the Environment Research Center Project Two “Environmental and Genetic Determinants of Puberty” Dr. Larry Kushi, PI Kaiser Permenante DOR Administrative Core Robert Hiat, MD, Ph.D Project One “Environmental Effects On The Molecular Architecture And Function Of The Mammary Gland Across The Life Span” Dr. Zena Werb, IP USSF School of Anatomy

15. Epidemiology Research Questions Is the onset of puberty occurring in girls today earlier than it did in past generations? What environmental factors influence when puberty occurs? Do exposures to chemical compounds that influence female hormones affect the age at onset of puberty?

16. Community Outreach Translation Core

17. Incidence Rates: Invasive Breast Cancer All Races/Ethnicities 2000-2007

18. Incidence Rates: Invasive Breast Cancer Bay Area Counties 2003-2007 All Races/Ethnicities

19. If you want to go quickly go alone; If you want to go far go together. - African Proverb