I struggled with back and hip pain since my early thirties, but it worsened and I went for a consultation in June 2022 — only to be told I was just “getting older.” In late October, I noticed an inverted nipple and went to my PCP right away. After a mammogram and ultrasound, the radiologist — 90 miles away — told me I needed a biopsy and that it looked like cancer.
Right after my bilateral mastectomy, my surgeon declared me cancer free. However, after further examination, cancer was found in a lymph node, and a PET scan revealed invasive lobular carcinoma (ILC) in my spine and pelvis. It was ultimately determined that my diagnosis was actually Stage 4 ER+/PR+, HER2- ILC – de novo metastatic.
I found LBCA through online research and studied the resources available on the website. I learned that ILC is difficult to see on imaging and often doesn’t form lumps, so I added routine ctDNA testing to my care. I also learned that certain treatments that work for ductal cancer have not been tested specifically on lobular breast cancer and so don’t necessarily work as well for ILC. I am now an advocate for LBCA and a Hear My Voice Advocate with Living Beyond Breast Cancer (LBBC). My goal is to connect rural breast cancer patients with information, resources, and support. I have shared information about LBCA with my regional hospitals and asked my oncologist to provide information about ILC to her patients. Unfortunately, because clinical trials typically do not study ILC specifically they do not address findings based on lobular versus ductal carcinoma, it is difficult to know the best treatment options for ILC.
It is exciting to see a growing number of hospitals with ILC-specific programs. I would love to see everyone who receives a breast cancer diagnosis — whether living in a rural, suburban, or urban community — get the best care for their specific type of cancer. Researchers need to develop more clinical trials specifically for ILC, and to detail findings from existing clinical trials based on histological subtype. LBCA is an expansive resource, and I recommend that everyone diagnosed with ILC use the site to connect with current research and experts, and to learn the specific questions to ask their providers to improve their care.
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.