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.
Meet Alma
My name is Alma. I’m originally from St. Louis, Missouri, but moved with my husband and two sons to Australia in 2015. My mother, who recently turned 80, was treated for breast cancer almost 30 years ago, so I’d always been vigilant about self-checks and annual mammograms as soon as I turned 40.
Not long after we’d moved to Australia, I began having recurring pain on my left side and armpit. It was annoying more than anything, and easily explainable– maybe I’d slept funny, was sore from working out, or perhaps my bra was too tight.
The pain persisted, and I began to suspect something wasn’t right. I had a mammogram and was told it looked fine, and I wouldn’t need to come back for another year. Two different doctors also gave me a clean bill of health.
On my own, I finally found a breast specialist. With a quick ultrasound she almost immediately identified a suspicious mass. Two days after a biopsy, I received the call confirming cancer.
During my lumpectomy, the tumor in my breast that was missed during at least two mammograms turned out to measure almost two inches (5 cm). On my pathology report “invasive lobular carcinoma” jumped out at me. I had never heard of it before. Googling wasn’t especially useful. It was 2017 and not much information was available online.
I was advised to undergo chemotherapy and radiation followed by 10 years of tamoxifen. Unfortunately, 4.5 years after my initial diagnosis, I found a local recurrence. Once again, I had clear scans, but repeated pain under my arm told me otherwise.
Educating Myself and Others About Lobular Breast Cancer
I’m grateful for the Lobular Breast Cancer Alliance for providing resources and education not just for patients like myself, but clinicians and researchers. When I was diagnosed, none of my doctors or care team mentioned lobular to me. It’s always been something I’ve had to raise. I’d like to see greater awareness of lobular from diagnosis to treatment, especially here in Australia. Though we are fortunate to have generally good medical care, our smaller population size means access to specialists, clinical trials, and tools are limited compared to the US or Europe.
I’ve recently connected with a researcher and pathologist in Queensland. I’m hoping together we can connect the dots between the amazing research she and her teams are working on and patients like myself.
My hope is that someday lobular cancer will be detectable through traditional imaging, but until then, we need to create enough awareness so that anyone can access non-standard imaging and get a correct diagnosis right away.
Are you interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.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.
