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 Stephanie
My name is Stephanie. I am 50 years old, and I live in Central New Jersey with my husband and two sons aged 11 and 16. I am a homemaker and stay-at-home mom.
On July 2, 2018, I found a lump in my right breast. After consulting with my gynecologist, I was sent for a mammogram and ultrasound. The lump was confirmed, and I saw a surgeon who scheduled me for surgery in early August. The lump was removed and sent for biopsy. The results came back that the lump was a benign tumor, but they also found lobular carcinoma in situ, a risk factor for cancer.
To be proactive, my doctor sent me for an MRI of both breasts. This showed a mass in the right breast. A subsequent ultrasound a week later showed two areas of concern. In September, I went for an MRI needle biopsy and three samples were taken. The results came back on September 21. I was diagnosed with invasive lobular carcinoma (ILC).
Learning More About ILC
As I wanted to know more about my ILC, I started doing research. That’s how I found the Lobular Breast Cancer Alliance (LBCA). The articles I found on their website were very informative and helped me form questions for my doctors. The information I learned also helps me inform others about ILC.
I had a unilateral mastectomy on November 13, 2018. The surgery revealed that there had been 22 small tumors. My oncologist sent a part of my tumors to get my Oncotype DX score, which was a seven, indicating that chemo would have little to no effect. It was also determined that radiation would not be needed as all the cancer was removed in the surgery and had not spread to the lymph nodes. I started a 10-year course of tamoxifen in January 2019 and had reconstruction that February.
The advice I would give someone facing an ILC diagnosis is to get as much information about lobular breast cancer as possible. I would tell them to visit the LBCA website for the resources, such as the ILC Fact Sheet and Questions for My Doctor. These will help you to be the best advocate for yourself that you can be.
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.
