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 Carol and I live in Pennsylvania. I was diagnosed with invasive lobular breast cancer (ILC) in July 2022 at age 70 and had a lumpectomy in August. Fortunately, it was caught early at Stage 1A. My margins were clear, and my lymph nodes were cancer free. The surgeon said I was lucky that it was caught because there were calcifications in the area and the tumor itself was not able to be felt or even be seen on the mammogram.
No one in my family has ever had breast cancer of any kind. I didn’t know anything about ILC, so I researched the disease online and found the Lobular Breast Cancer Alliance (LBCA) and signed up to receive the newsletter right away!! I was impressed by the amount of information LBCA has on its website.
My surgeon sent me to a medical oncologist and radiation oncologist nearby. A doctor friend advised me to get second opinions because apparently there are differing opinions on what to do. So, I arranged to get second opinions at another hospital.
Learning More about ILC
Around the same time as this was all going on, the LBCA newsletter came out. It included a link to a helpful document entitled Current and Future Diagnostic and Treatment Strategies for Patients with Invasive Lobular Breast Cancer by Karen Van Baelen, et al.
I am a chemical engineer by training and am able to understand scientific stuff, so I eagerly read this article and was surprised by how much information it had and how NO ONE on my medical team had shared this information with me.
It never occurred to me that lobular cancer spread differently but was treated the same as invasive ductal cancer. The publication helped me make decisions about my course of treatment and what I might want to consider asking for in the future in addition to mammograms. With all of the information I received from the medical and radiation oncologists, I felt good about the treatment decisions I made. I am now on an aromatase inhibitor and am doing well on it (what’s a hot flash every now and then!).
My advice to all my friends is to be aware that ILC is not the same as ductal breast cancer. We definitely need research specific to ILC – it is a different disease!
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.