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.
My name is Tara. I am from Queens, NY, and live on Long Island now with my husband and four children. I’m a fitness professional, avid runner, and previous marathon runner. After leaving a hectic corporate environment, I turned my hobby/outlet of fitness into a flourishing career.
As someone who had open heart surgery at 2 1/2 years old, a corrective sternum surgery at 12 years old, and developed heart enlargement/arrhythmia during the last decade, I’m no stranger to dealing with adversity. I also was diagnosed with melanoma in 2021.
Throughout the years, I had many call backs after mammogram screening mainly attributed to fibrocystic changes. Having extreme dense breast tissue, it was difficult to get a clear picture. A doctor once told me “trying to find cancer in a patient like you is like trying to find a polar bear in a snow storm.”
Just after my 50th birthday on August 22,2022, I went for a routine mammogram/sonogram and got a call back. My previous mammogram was just one year prior. The radiologist who read my report saw something called “architectural distortion.” Having a loop recorder inside my left chest to record my heart rhythm, we were hoping the tissue was distorted for this reason.
Following the diagnostic mammogram/sonogram three days later, the radiologist told me I needed a biopsy. On August 29 I had a compression biopsy. The following day, my doctor called to say it was invasive lobular carcinoma (ILC), and two days later I had an MRI. If I was considering a lumpectomy, the radiologist said more areas were concerning and additional biopsies would be needed.
I started my research straight away, and it led me to the Lobular Breast Cancer Alliance (LBCA). The website had so many great articles, and the support and information were powerful. I found a wonderful doctor in New York City who recommended a bi-lateral mastectomy, which I had in September. I had the tissue expanders implanted that day as well.
My surgeon called me on October 3, also my daughter’s birthday, to tell me she cleared my margins and that the nodes looked good. My sister was with me and screamed “Let’s Go!” with excitement and gratitude.
My pathology report said there was cancer in all four quadrants of my left breast and lymph vascular invasion Stage 2. The multi foci tissue with pleomorphic features spoke of more aggressive disease. The right breast had lobular carcinoma in situ, which the MRI didn’t pick up. In my surgeon’s words “it’s nothing short of remarkable that your lymph nodes are clear with the amount of cancer and invasion.”
When asked how the cancer didn’t get to the nodes from the invasion, she replied, “It didn’t have time to reach them.” I acted fast!
After going back to the LBCA website, I decided to seek the advice of a doctor who worked with lobular patients. In Boston, I confirmed that my course of systematic treatment in New York was sufficient and that the estrogen-based cancer wouldn’t need chemo and that it would be dangerous for me, regardless, due to my heart. He spoke at length about the advances in research of lobular and all the work the LBCA is doing to promote awareness of this type of cancer. I will continue to advocate and share information about lobular breast cancer!
Are you interested in telling others about your own lobular breast cancer story? Please email email@example.com 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.