When I was diagnosed with breast cancer in September 2023, I had never heard of invasive lobular carcinoma (ILC). Because ILC generally doesn’t produce masses or tumors, it is hard to detect on mammograms, especially if you have dense breasts. This means many women do not receive a diagnosis until they are in later stages. ILC affects about 10-15 percent of individuals with breast cancer, with an average diagnosis age of 62 years.
I was one of the lucky ones because my radiologist saw a scar on my mammogram and wanted a biopsy. It turned out that I had early stage lobular cancer. Two months later, I had a double mastectomy and reconstruction but did not need chemo or radiation. I am now cancer free, at least for now. ILC tends to come back later (after five years), so I need to be vigilant about new symptoms.
ILC symptoms include changes in breast size and nipples, dimpling, thickening, and pain. In my case, my breast size increased dramatically, from a 34B to a 36D over a couple of years. I kept buying new bras because my button-down shirts were busting off my chest like Superman when I moved by arms. I asked my primary care doctor and OBGYN about it, and they told me it was fat, related to menopause and estrogen loss. I hadn’t gained much weight during menopause, so this seemed odd to me, but I went with it. I know now that I need to strongly advocate for myself when I think something is wrong with my body.
As soon as I was diagnosed with ILC in September 2023, I started searching the internet, and fortunately, found the Lobular Breast Cancer Alliance (LBCA) website. It includes comprehensive resources about lobular breast cancer and questions for your doctor etc., translated into many languages. In addition, they have a lobular breast cancer research publication library, stories from others with ILC, and a list of open clinical trials on lobular breast cancer around the world. It is a wonderful resource, particularly because many patients are not given any information by their clinical care teams. LBCA is also a great convener of others with lobular breast cancer and provides information about how to advocate effectively for more lobular breast cancer research. It is through LBCA that I was able to form the Local Advocacy Team DMV with another member to raise awareness of lobular breast cancer in Washington D.C., Maryland and Virginia.
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.
