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 Lizzie
In October 2020, after finding a questionable lump, I went in for a mammogram. It had been 19 months since my most recent due to COVID (with consistent screenings prior). It felt like the same dense breast tissue I had felt in the past. But it wasn’t changing with my monthly cycle. A month later, I was diagnosed with Stage 2 ILC and LCIS in my right breast. Follow up testing (MRI, additional biopsy and oncotype scoring of my tumor), plus the results of a key research study, determined my course of treatment. The choices I had to make were whether to do a single (necessary) mastectomy or a bi-lateral, and whether I wanted reconstruction.
In January 2021, I had my first surgery for a single mastectomy with lymph node removal. (The second surgery in October 2021 was related to breast reconstruction.) Two nodes tested positive, kicking off 5 weeks of radiation. I am currently on a 10-year aromatase inhibitor course.
I live in a rural region in upstate New York and chose to do my treatment in Boston. It was the height of COVID lockdowns. Boston is a city I know well. My family was not allowed to join me at any of my appointments. Not one. I lived at a hotel for five weeks in an empty city, walking 5 miles daily to and from the hospital.
What I thought would be an “event” turned into a healing journey. There is a perception that not needing chemo makes it all easier. Cancer is still cancer, and whatever treatment you go through is hard and will leave an impact. Knowing I have friends all over who support me and that there are places where I can find information about my breast cancer type really helps.
Through my oncologist, I was connected to and began to volunteer for a strong, dedicated (breast cancer) patient advocacy group at my cancer center. The work supports building awareness around clinical trials, and ensuring patients understand, in plain language, all our options, and how to navigate breast cancer and survivorship. Through this work, I learned way more about lobular cancer and heard about the Lobular Breast Cancer Alliance. I learned that the growths that occur are often hidden in (dense) breast tissue, making tumors harder to detect. This knowledge has led me to self-advocate for additional screening. Lobular is not often studied within breast cancer studies or clinical trials with participants with the more common ductal breast cancer type (yet!) so asking questions of researchers about whether it is going to be studied and/or if the study could focus on lobular too is important.
LBCA has become a resource I turn to, especially with lobular-specific questions. I am optimistic that the work being done by LBCA and other patient advocates to push for more lobular-focused research or at least increase the instances when the lobular cohort within a larger study will get some analytic focus and lead to specific treatment options for lobular.
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.
