Many women with lobular breast cancer who have found their way to the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed want to help build a community among peers, to share the most current information about invasive lobular carcinoma (ILC) detection, treatment and clinical trials, and to raise awareness about this common yet understudied and sneaky breast cancer that needs more research. Sharing their ILC story is just one of those ways.
I am an entomologist with a lifetime of studying insects on university campuses. I grew up and had my first career in New York. Presently, I live in Georgia. As a hobby, I am an experienced animal trainer, having spent time with dolphins, birds of prey, otters, bears, bobcats, and other species.
I was diagnosed with pleomorphic invasive lobular carcinoma on biopsy at the beginning of the COVID epidemic in 2020. Hospitals were closing their doors to patients needing diagnostic tests and surgery. I was afraid to travel to a metropolitan breast cancer center for a second opinion because of the virus spread.
As I have a substantial amount of experience in experimental biology, statistics, and genetic research, I became my own second opinion. I studied my pathology and test reports and compared my results to the National Comprehensive Cancer Network guidelines on breast cancer. I turned to the research journals to look up clinical trial results. Through a medical center’s website, I found the link to the Lobular Breast Cancer Alliance and all its resources regarding ILC. This included fact sheets, educational videos, and a research publication library.
With consultation from my doctor, I had same-day double mastectomy surgery and 30 radiation treatments. Based on my Breast Cancer Index™ test results, I will be taking anti-estrogen therapy for 10 years. I feel compelled to keep abreast of advances in ILC research. This is facilitated greatly through the resources provided by the Lobular Breast Cancer Alliance.
More Learning Needed About ILC
Although there are now many more ILC research studies, which is notably different from invasive ductal carcinoma (IDC), there has still not been enough research conducted to warrant changes in breast cancer treatment guidelines. Treatment protocols for ILC remain the same as those for IDC. My advice for patients newly diagnosed is to find a medical team in which you have complete confidence, and give a little part of your life to learning about lobular breast cancer and advocating for more research.
Would you like to tell others your ILC story? Send an email to email@example.com to request more information.