Many women with lobular breast cancer have found the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed. They 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 breast cancer subtype that needs more research. Sharing their stories is one of those ways.
My name is Jeri, and I am a retired oncology registered nurse (RN) living near West Chester, Pennsylvania. I was diagnosed with de novo metastatic invasive lobular carcinoma (ILC) in April 2021 after an annual mammogram identified a portion of an abnormal looking lymph node.
I had just turned 60 a week prior, was asymptomatic, and very active. The biopsied lymph node was positive for ILC. A subsequent PET scan identified multiple active areas, but an especially concerning finding was an active, enlarged ovary. Surgery identified ILC in not only both ovaries, but also the fallopian tubes and the uterus. A bone scan found bone metastases.
While my ILC is ER+, PR-, HER2-, two types of estrogen therapy each combined with another drug were unsuccessful, and I progressed after each. Ten months post diagnosis, I was placed on a different drug and have stabilized.
Finding the Lobular Breast Cancer Alliance
As an oncology RN, I understood much of the information on breast cancer, but I found the Lobular Breast Cancer Alliance’s resources to be extremely helpful in explaining the uniqueness of ILC and its pattern of metastasis. LBCA also helped me understand why ILC continues to be missed by traditional scanning.
Last October, during Breast Cancer Awareness Month, I used my Instagram account to post a fact a day about breast cancer and ILC, as I have found that many people believe that breast cancer is a singular disease. There’s a real need for education within the breast cancer arena, especially when it comes to ILC.
One area I pursued with my oncologist was engaging a physical therapist who was knowledgeable about safely exercising with bone metastasis and osteoporosis. I was a long-time runner, cyclist, etc., but I understood that some of my activities may not be safe if I wanted to avoid unnecessary fractures and spinal compression. I was referred to a physical therapist who was certified in oncology. The therapist was instrumental in educating me on unsafe exercises and developed a program specifically for me. I find it empowering and it allows me to live my life to the fullest while being safe.
While Jeri used Instagram last year to educate others about ILC, this year she is using Facebook to raise money for LBCA. You can donate to her The LOVE YOUR LIFE Challenge #beyond pink fundraiser via LBCA’s Facebook page or follow her lead and create your own Facebook fundraiser.
Are you interested in telling others about your own lobular breast cancer story? Please email firstname.lastname@example.org to request more information on how to submit your story. For more information about lobular breast cancer or to make a gift visit lobularbreastcancer.org.