My ILC Story – Susie

Many women diagnosed with lobular breast cancer have found their way to the Lobular Breast Cancer Alliance (LBCA). So have many of their friends and family members, who are also looking for ways to share the most current information about ILC detection, treatment and clinical trials, and to raise awareness about ILC. This includes mothers like Susie. Learn how she became an LBCA advocate after her daughter’s diagnosis. 

Meet Susie

My California daughter was 42 when she was diagnosed with 8cm of invasive lobular carcinoma (ILC), also known as lobular breast cancer, in her left breast. As with many patients with lobular breast cancer, her mammogram was clear the year before, and no one had told her that dense breasts might need a higher level of scrutiny. The family had a flurry of decision making: One or two breasts for mastectomies? Nipple-sparing or not? What kind of reconstruction? Why biopsy the “funky” liver before chemo?

With both grandmothers having had breast cancer, what is the risk for other family members? How many chemo treatments? Ice caps for hair loss, armpit-less shirts for radiation burns, a hysterectomy which flipped her into menopause, the story goes on. What could a “Momma Bear” do? Maybe I should channel my outrage into advocacy?

In 2016, the same year of my daughter’s diagnosis, the 1st International Lobular Breast Cancer Symposium was held. I loaded the Twitter app on my phone and followed Dr. Matt Sikora who Tweeted from Pittsburgh in real time the revelations from ILC specialists. I fiendishly Googled medical terms. A retired history teacher, I embraced research, but I had a huge learning curve ahead of me.

As my daughter struggled with side effects from different endocrine therapies, I became impassioned about research being needed specifically for ILC treatments. An advocacy group of dynamic women was formed, the LBCA. I volunteered for the Steering Committee. I now serve on the Research Committee of this important organization that promotes ILC education, advocacy, and research. I reach out to researchers, drug companies, and clinicians to “nudge” them to not only include ILC patients in their studies, but to report out results on a lobular cohort. I also help the LBCA publications curator compile data on research and clinical trials.

Our family set up a Lobular Fund at the Cleveland Clinic with the money put toward collating a retrospective registry of lobular patients from 1990-2020. The Cleveland Clinic collated their data with the University of Pittsburgh and Ohio State University, forming the Great Lakes Breast Cancer Consortium, and analysis specific to lobular protocols was made possible. I was excited when lobular breast cancer was featured at the 2019 Great Lakes Breast Cancer Research Symposium at Ohio State University, and An Evening of Learning about Lobular Breast Cancer, broadcast internationally, was held at the Cleveland Clinic. I may be an empty nester, but a Momma Bear’s work is never done!

Would you like to tell others your ILC story? Please email communications@lobularbreastcancer.org to request more information on how to submit a story.

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