Consumer Involvement
Posted June 21, 2022
Lori Petitti, Lobular Breast Cancer Alliance
In the summer of 2010, I felt a thickening in my left breast. My doctor ordered a mammogram which appeared normal but it did note that I had dense breasts. After 6 months the thickening did not go away and I pushed for another mammogram and was diagnosed with Stage 2 pleomorphic invasive lobular breast cancer. There was no history of breast cancer in my family and I was unaware that breast cancer could present as something other than a lump. That was the start of my breast cancer advocacy journey.
In 2016 I retired from my career as a television and documentary producer in the Los Angeles area. I attended my first conference, the International Invasive Lobular Carcinoma Symposium, and met a group of like-minded advocates. Together we formed the Lobular Breast Cancer Alliance (LBCA) to help raise awareness for this breast cancer subtype that affects 12-15% of all patients. As a founding member, I was involved in the design of our website, the educational materials we developed and our first poster developed to educate about lobular breast cancer that was presented at the San Antonio Breast Cancer Symposium.®
My oncologist and I have a great relationship and she was the one who told me about the DOD Breast Cancer Research Program (BCRP) and encouraged me to get involved. I attended the National Breast Cancer Coalition’s Project LEAD® to learn more of the science of breast cancer and in 2017, through the LBCA, I applied and was accepted into the DOD BCRP consumer reviewer program.
Reviewing for the DOD BCRP program is my absolute favorite part of my advocacy. I have learned so much from the proposals and panel members. I enjoy the challenge of reading and interpreting the information, critical thinking, knowing the right questions to ask, and learning how to listen effectively. I realize the importance of having a patient’s voice present during the panel reviews. And the panel members are so gracious in clarifying information and listening to my comments. It is clear that the scientific community understands the myriad of challenges facing the breast cancer community – patient care, safety and efficacy, improving life expectancy and working to eradicate disease. I strongly feel that by participating in the DOD BCRP panel reviews, I can make a difference in ending cancer.
I am an active participant in the breast cancer community and serve as a mentor to newly diagnosed patients for two large organizations. I am also active in Los Angeles with the Breast Cancer Care & Research Fund where I oversee a micro-grant program for advocates and researchers working in their communities to address the challenges breast cancer patients face. And every day I take a long walk with my dog and remember to be grateful to all the passionate and dedicated people working within the cancer community!
Last updated Thursday, December 5, 2024