Many women with lobular breast cancer have found the Lobular Breast Cancer Alliance (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 Tanya
My name is Tanya. My husband and I have been married 27 years, and we have two beautiful children. We live on an acreage in Nebraska and have two horses and three dogs. I am the vice president at a bank and lead a team of professionals in providing employee benefit accounts for employers.
In November 2020, I went in for my annual physical and my doctor sent me for a routine mammogram. I was 47 years old. The next day I got called back for a 3D mammogram. They had found a few small calcifications. I had a biopsy and received the call that it was ductal carcinoma. I was scheduled to see a surgeon.
In the meantime, a dear friend of mine urged me to get my genetics testing done and see a high-risk cancer nurse practitioner (NP). I did, and the genetic testing came back negative. The NP also ordered an MRI. The MRI discovered a large lobular tumor that had been completely missed on the mammograms.
This completely changed the trajectory of my treatment. Instead of a lumpectomy, I was now facing a mastectomy. I reached out to a female oncology surgeon for a second option. She helped me accept that a bi-lateral mastectomy with immediate reconstruction was the best option for me. In the meantime, my Oncotype score come back as a 27, meaning I would need chemo. The tumor would end up being 3.2 cm, but I was fortunate that there was no node involvement. My surgeon ordered a Mammaprint on the tumor and it came back “low risk.” Now I had the dilemma of a high Oncotype score and a low risk Mammaprint. Ultimately, I did decide to do four rounds of chemo. A month after completing chemo, I started Tamoxifen.
Finding the Lobular Breast Cancer Alliance
Throughout my diagnosis and journey, I searched for information on lobular breast cancer. The best information I could find was on the Lobular Breast Cancer Alliance (LBCA) website. Prayer, the support of my family and friends, and my dog and horse got me through the toughest times. I am so blessed!
A few months later, my mom was also diagnosed with lobular breast cancer. Her genetic testing had also come back negative. She would undergo a single mastectomy and 25 rounds of radiation.
I knew I had to get involved in advocating for more research and better treatment for lobular breast cancer because I have a daughter and nieces. Last summer I joined the LBCA Board of Directors.
On February 7, I joined women at the Nebraska State Capital to support the Nebraska LB 145, which would mandate insurance companies to cover supplemental breast screening to those with dense breast tissue and those who are high risk for breast cancer.
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.
