Advocacy and breast cancer are not new words in my vocabulary. When I was thirteen, my mother was diagnosed. In those years, cancer isolated my mother from her friends and acquaintances as then the belief was that it was like polio and likely contagious. My high school and college years were very different than those of my peers. As the only other female in the family, I needed to help my mother with treatments. While I was in college she died.
A pattern in my life is to address issues with direct action.
I have no formal education in the science of medicine and, after completing my American Studies and Education, I taught elementary school. That lead to getting a masters in reading and working as a reading specialist with children from underserved communities. In those positions I experienced, through my students, the social determinants of health and the impact of foster care. This led to my advocacy through founding a nonprofit on foster care and action on boards (advisory and nonprofit) on the county and state levels.
Cancer became very personal when my son was thirteen and I was diagnosed with breast cancer. A year to the day of my first diagnosis, I was diagnosed with a new early-stage breast cancer. It was time to educate myself and step forward in advocacy. I educated myself through local resource groups and then moved to attend NBCC’s Project LEAD. I attended state programs on cancer and went to a national meeting in San Antonio to further my ability to understand the science along the breast cancer continuum. I later applied for grants to attend several training programs which deepened my knowledge and allowed me to develop a network of other advocates.
I volunteered on the local Komen board and worked on educational outreach, and later the Komen affiliate’s Community Grants Committee. My previous experiences translated to roles I could serve in and learn from as I took steps to add value within the Carbone Cancer Center at the University of Wisconsin-Madison (UW-Madison).
Two researchers invited me to the UW-Madison research and organizational tables. I participated with researchers and as a research advocate asked questions relevant to moving the work to clinical application with a strong bias to limiting toxicities. I have also used reading literacy skills to help write lay abstracts, develop educational materials and look thoroughly at what patient participation “costs.” The toxicities often go beyond physical to financial, etc.
It was through participation in the AACR Scientist-Survivor program that I really learned to look with an expanded vision of cancer. I learned about the overlap in mechanisms in different cancers. I called this my awakening to the cancer “signature” as important as well as the site of the cancer.
My other experiences include serving on grant review and operational committees, strategic planning, the patient family advisory council and several quality improvement committees at UW Madison. In addition, I served as a Scientific Research Advisor at the Oregan Health and Science University (OHSU)’s Knight Cancer Center for a decade. My research advocate appreciation for relevance of signature became particularly impactful as immunotherapy research expanded. At OHSU as well as at the UW Madison I worked in multi-institution collaborative projects (UW-Madison- NIH Breast Cancer Environmental Research Program & OHSU-International Alliance for Early Cancer Detection with US and English research centers).
At ACE I’m looking forward to connecting with research advocates from other research institutions and organizations. That ACE includes advocates with “learned” and “experience” knowledge in cancer located in other sites will be particularly relevant and will inform my future efforts.
My third diagnosis of breast cancer has limited my expanding involvement beyond current commitments and my role as a Trustee at a Hispanic Serving University (HSU) in the Chicago area. My goal is to support new advocates and community-based health navigators. I want others to know even without extensive science background you can bring other skills as well as learn new skills to contribute and add value to improving lives of those facing cancer.
