My name is Janelle, I am 41 years old and I live in Maryland – in a suburb about 30 minutes outside of Baltimore. I am a small town, blue crab-lovin’ Maryland girl who moved to Baltimore in 2001 to pursue my dreams. I married my college sweetheart, and from that union came two amazing tiny humans and more recently, a fluffy goldendoodle. For the last 16 years, I’ve worked to support and protect participants in human research studies, and for the last few years, I’ve led efforts to support multi-site clinical research studies across the United States.

At 17, I noticed a lump in my right breast. I underwent an ultrasound, and it was determined to be a benign cyst. Although it was considered unproblematic, I carried the fear of ‘what if…’ for years after that ultrasound. In my late 20s, I mentioned the lump to my Gynecologist. She agreed with the prior diagnosis but understood my concerns and my family history [my mother was diagnosed with ovarian cancer at age 40]. She ordered a baseline mammogram. I then had mammograms every year after age 35. I am thankful for having a Gynecologist who listened to me.

In May 2024, after my yearly mammogram [my first after 40], the radiologist noted an increase in calcifications in my right breast in comparison to previous scans and recommended a biopsy. I underwent a stereotactic biopsy in June 2024, and a day later, I was informed that I had breast cancer. I found out via myChart message from my GYN! Not ideal. It was late in the afternoon, so the radiologist was not available to call me and provide the results over the phone. I had to sit with that news, no stage or prognosis information, all night long. I was breathless, worried, and honestly felt frozen in time. What would I say to my husband? My daughters? Why me?

My official diagnosis came the next morning – stage 1a lobular carcinoma, ER+, PR+, Her2-. Because I work in research, I have a basic understanding of cancer prognosis, so this news actually put me at ease. The more information I gained, the better I felt, and the ‘why me’ became a ‘why NOT me?’ I am 40 years old. I am healthy, eat well, and this should not have happened, but now I must find the purpose in it.

I wasn’t given any information about Invasive Lobular Carcinoma (ILC). I reviewed all current research being conducted by my institution and I found no active research studies. Was ILC rare? Is the standard of care treatment the same as IDC? Should it be? After a quick google search, I discovered LBCA. I was amazed at the information available on the website. One of the more shocking metrics I found was that ILC is most often diagnosed in white women in their 60s. I was a 40-year-old black woman. That data was telling — I need to be included in future research studies focused on ILC. Suddenly, my purpose was clear. Are there others like me? How do I find them and connect with them? How do I diversify existing clinical research? How
do I help other women learn about ILC from a reliable source like LBCA?

I am eager to learn more information about the prevalence of ILC and research studies that focus on treatment and management of this cancer type as opposed to IDC. I was ecstatic to see the new SEER demographic statistics, which I plan to share with several “Breasties” and support groups I’ve joined during the last 6 months. It was disheartening to not have that information at the time of diagnosis; however, having found LBCA as a resource, future patients with ILC will, with the help of advocacy from survivors like me, have immediate access to
ILC-focused data at the time of diagnosis. It’s only scary when you don’t have a plan. Information is power!

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.