Because I have dense breasts, I receive annual mammograms. In the fall of 2021, at age 55, I went for what I expected to be another routine appointment. The next day, I received a call asking me to come back for further testing. They had seen calcifications – white specks – in my right breast. I was told this was common and likely nothing to worry about. At this follow up appointment I had a contrast mammogram, an ultrasound and a biopsy.
Not long after that, my family doctor called with the biopsy results and said it was ductal carcinoma in situ (DCIS). I was referred to a surgeon, and based on thinking it was DCIS, I chose to have a lumpectomy without doing a sentinel node biopsy. Everything moved really fast. I met the surgeon and had surgery within ten days.
Then the pathology came back, and it turned out it wasn’t DCIS after all. It was stage one invasive lobular carcinoma (ILC). That was a moment where everything shifted. What I thought I was dealing with suddenly wasn’t what I had been told.
So I had to go back in for a second surgery to do the sentinel node biopsy and take wider margins. Looking back, I think the hardest part is that I didn’t really understand what lobular breast cancer was at the time. No one explained to me how it’s different from other types of breast cancer. If I had known more, I might have made different choices about my treatment.
Because everything happened so quickly, I didn’t really start learning about it until after my surgeries and radiation were done. I pulled out my pathology report and began researching on my own. That’s when I realized that lobular breast cancer behaves differently and can be harder to detect.
Finding the Lobular Breast Cancer Alliance (LBCA) was a turning point for me. For the first time, I had access to information specific to ILC. The LBCA website is full of research, resources, and guidance that helped me better understand my diagnosis and what to watch for moving forward.
In my case, the cancer was caught early (stage one, 3.5 mm) and I feel really lucky about that. But what concerns me most is how easily it could have been missed. My cancer didn’t show up on imaging and was only definitively identified after surgery. For women with dense breasts, especially those with lobular breast cancer, detection is so much more challenging.
What I’ve also come to understand is that much of the research and many treatment approaches are still based primarily on ductal breast cancer. Lobular breast cancer hasn’t been studied in the same way, and that gap shows up in how information is shared, and sometimes not shared, with patients.
If I could change one thing, it would be ensuring that anyone diagnosed with invasive lobular carcinoma is given clear, upfront information about what it is and how it differs from other types of breast cancers. It’s different, and those differences matter. They shape the choices you make, and they can change the path you go down.
Are you interested in sharing your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request information about how to submit your story.