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 Kathy, and I’m a physician who recently retired from a career spanning both women’s health and research in pharmaceutical safety. I hail from upstate New York but for over 40 years my home and my heart have been in Philadelphia where I met my husband-to-be in a community choir just as I was completing my medical training. We have four wonderful children (including two doctors!) and three awesome grandkids. I look forward in retirement to spending more time with my family, indulging in musical hobbies (I sing baritone with a female “barbershop” chorus and am learning to play the folk harp), and supporting the LBCA.
I was diagnosed with invasive lobular carcinoma (ILC) in 2019. Ironically, I received the news on October 1, the first day of Breast Cancer Awareness Month. After years of regular mammograms, I underwent my first 3-D study in August of that year and an abnormality was noted in the left breast that merited further testing.
Over several worrisome weeks, this area was evaluated with more mammographic views and an ultrasound-guided biopsy, but all findings were nonspecific. Finally, a bilateral MRI showed the LEFT side to be unremarkable but revealed an abnormality in the RIGHT breast. This had been invisible on mammography.
The surgeon who reviewed the results seemed unsure of their significance, so I reached out to a trusted specialist at a cancer referral center for a second opinion. She immediately suspected the correct diagnosis and, almost two months after the initial mammogram, a right breast biopsy yielded a definitive diagnosis of ILC, eventually staged as 1B. I often wonder if, were it not for that initial “false positive” mammographic finding on the left that prompted the MRI, the cancer on the right might yet be undetected and untreated.
As a former researcher, I turned to online medical literature for answers about ILC to help inform my early treatment decisions. However, I also discovered the LBCA website and was inspired by their commitment to expanding awareness and providing up-to-date information about ILC.
I was stunned to learn that because of its unique histology, ILC is so often missed on routine mammography. I was also amazed that there are such gaps in knowledge regarding best diagnostic and treatment approaches for this specific subtype despite its being the second-most common variety of breast cancer.
LBCA‘s mission has motivated me to become a member of its Board of Directors and to participate in initiatives of the Research and Advocacy Committee. As new information becomes available, it’s exciting to hear about novel avenues of scientific investigation that could ultimately result in greatly improved methods of detection and treatment of ILC.
If you’ve been diagnosed with ILC, you’re not alone! Learn all you can about your disease, be sure your care team is aware of its unique characteristics, look to other patients for support, and explore advocacy opportunities! Together we can help fulfill LBCA’s vision of “a world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.”
Are you interested in telling others about your own lobular breast cancer story? Please email firstname.lastname@example.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.