Many women with lobular breast cancer have found 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 Jessica

My name is Jessica. I live in California, am married, and have two teenagers from a previous marriage. I had a baseline mammogram in 2019 that was clear but showed dense breast tissue.

In early June 2023, I went for a routine mammogram screening (now I know I should have asked for ultrasound testing), where a swollen axillary lymph node was observed. I was called back for an additional screening that revealed a “distortion” along with it. This was the beginning of a long process involving ultrasounds, biopsies, CT and bone scans, MRI, etc. I was finally diagnosed with invasive lobular carcinoma (ILC) that had spread to my axillary sentinel lymph node.

I had never heard of ILC. Like most women, I thought you would “feel a lump” if you had cancer or you would feel sick! I felt fine, no symptoms other than the slight sensitivity in the lymph node. In fact, I was riding my horses and working out doing CrossFit and other exercises routinely!

Now, thanks to the Lobular Breast Cancer Alliance, which I found on Facebook, and others I have learned more than I ever thought I would need to know about ILC. I’ve been extremely fortunate with support from my husband, friends, family, healthcare providers, the cancer community, and more.

I underwent a double skin sparing mastectomy in August 2023 without reconstruction; an axillary lymph node dissection; and a lymphovenous bypass surgery, which creates a path for lymphatic fluid to flow away from the arms. I started AC Chemo “dose dense” protocol in October and will follow that up with radiation in 2024 and ultimately Tamoxifen for 10 years.

If I could offer advice to someone newly diagnosed, I would say:

1. Take things one step at a time.
2. Always get a second opinion even if you trust your doctor(s).
3. If you notice anything “off” in your body before, during, or after treatment be your own advocate and ASK questions.
4. Be kind to yourself during this process. It is at times very humbling, ask for help!

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.