My name is Mandy, I live in Kentucky and manage marketing and recruitment for a nonprofit community blood center. I have two children who were 15 and 12 years old at the time of my diagnosis.  In April 2024, I had my routine mammogram. I had lost about 30 pounds since my last annual screening and the tech mentioned I shouldn’t be concerned if I was called back for a diagnostic mammogram since breast tissue can appear differently after weight gain or loss. On May 28, I had my diagnostic mammogram. After several rounds of images, they told me they wanted to do an ultrasound. I had been down this path before and wasn’t worried.

However, they began an ultrasound on an area that was not the spot they were looking at initially. The radiologist was concerned and did an immediate biopsy. Three days later, I got the call. Invasive Lobular Carcinoma (ILC). Fortunately, the lymph node they had also biopsied was negative and so I hoped my ILC was contained.

I made an aggressive choice to have a bilateral mastectomy. I was the fifth woman on my maternal side of the family to be diagnosed with breast cancer, and the youngest at age 44. Friends in cancer care said the same thing…” don’t mess around with lobular cancer.” I knew I had to do everything in my power to be around for my kids. On June 25, I had my double mastectomy. The anxiety that month was unbelievable. I couldn’t imagine living with the worry of it coming back if I’d only done the lumpectomy. I realize everyone has their own particular circumstances and makes their own choice based on what is right for them. This made sense to me.

I was fortunate to have a low Oncotype score which meant I would not likely benefit from chemotherapy. Because my cancer was estrogen and progesterone “fed” (i.e., positive), I will be taking the estrogen suppressing drug tamoxifen for the next several years until I am just a week shy of my 50th birthday. I also had genetic testing – and was remarkably, despite my family history, negative for 70 known cancer-causing genes. Two months after my mastectomies, my maternal aunt was diagnosed as well…all three daughters in one family… with invasive ductal carcinoma. Despite what the genetic tests indicated, I wonder if there is a gene we all carry that just hasn’t been identified as cancer causing.

What I do know is this…my daughter will know more than I knew. My 10-year risk of recurrence is 3%. Managing even those small odds has provided me with lots of anxiety. I’m not through my reconstructive surgeries and seeking out support groups to help me with the question of “what’s next?” I was very well versed in breast cancer given my family history. And yet, I had never heard of lobular breast cancer. I found the LBCA website when I was panicked and confused and am so thankful that resources about lobular breast cancer exist there.

I would tell someone facing this diagnosis to listen to their gut. Some people thought I was being overly aggressive to do a double mastectomy at stage 1A, but I knew I had to do it. My pathology showed possible pre-cancerous cells in both breasts and my surgeon supported my choice. It wasn’t easy, and I’m still wrestling with the person I see in the mirror. 10 months later, but I don’t believe for a moment I should have done anything differently.

Are you interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request  information about how to submit your story.