In June 2022, invasive lobular carcinoma (ILC) researchers, clinicians, and patient advocates came together in Utrecht, Netherlands, for the joint International ELBCC/Lobsterpot & LBCA ILC Symposium and Summer School.
On the morning of June 20, the Lobsterpot Summer School took place providing a focused and accessible introduction to ILC for all, regardless of any attendee’s level of knowledge on the topic. After being welcomed by ELBCC Chair and Lobular Breast Cancer Alliance (LBCA) Scientific Advisory Board (SAB) member Dr. Patrick Derksen, various presenters spoke on the topics of Mammary Gland Development and ILC Histology/Pathology, ILC Model Systems, Systems Biology Approaches for ILC, and Risk Factors, Clinical Diagnosis, and Treatment of ILC.
At the end of the Summer School sessions, ILC patient advocates had time to engage with each other and discuss how they could increase advocacy efforts in Europe and North America.
The first afternoon brought the official opening of the ILC Symposium, which included a Keynote Address by LBCA Founding SAB Chair Dr. Steffi Oesterreich titled What have we learned about ILC, and does it matter? Dr. Oesterreich was followed by a science session on Hormone Receptor Function and Drug Responses in ILC. The final session of the afternoon featured LBCA funded researchers Drs. Candace Frerich, David Lim, and Karen Van Baelen discussing their ILC projects.
The second day of the ILC Symposium kicked off with a two-hour Patient Advocate Session. Topics included The Biology and Clinical Aspects of ILC, How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research, and presentations on what patient advocacy groups such as Lobular Breast Cancer UK, LBCA, Lobular Ireland, and others in Europe are doing to spread the word about ILC and the need for more ILC research.
The afternoon sessions included a keynote lecture by Dr. Sabine Linn, MD, PhD, titled Toward Precision Medicine for ILC followed by presentations on the topics of Cell Adhesion and the ILC Micro-environment. The complete agenda is available on the ILC Symposium’s website.
With the support of the Metastatic Breast Cancer Network, LBCA was able to provide travel scholarships for several ILC patient advocates. One advocate who attended was Dawn Wiklinski. She commented, “I was excited to attend the symposium. I learned so much! It was so exciting to see the passion dedicated to finding treatments for this specific type of cancer. I am anxious to get started helping and learn more about what I can do. I feel much more knowledgeable from being at the conference.”
Patient advocate Gitte Joergensen also attended the ILC Symposium with help from a travel scholarship. Gitte left the event with multiple takeaways. She said, “During the symposium, I met another ILC advocate from Norway, and we have plans to work together to get ILC represented in the European Nordic countries since I’m originally from Denmark. This would never have happened if I hadn’t attended the ILC Symposium.” Read Gitte’s other thoughts about the symposium and watch videos from her and other event participants below.
Organizing committee members for the ILC Symposium included: Dr. Derksen and Dr. Oesterreich; LBCA SAB Chair Otto Metzger, MD, PhD; ELBCC members Christine Desmedt, PhD, and Anne Vincent-Salomon, MD, PhD; Thijs Koorman, PhD; LBCA Executive Director Laurie Hutcheson; ELBCC Patient Advocate Rian Terveer-Couperus; Lobular Ireland Founder Siobhán Freeney; Lobular Breast Cancer UK Founder Claire Turner; and the late LBCA Founder Leigh Pate.
A virtual panel presentation recapping the ILC Symposium science in lay terms took place on September 14 from 11am to 1pm EDT.
Watch – ILC patient advocates and researchers discuss their experiences at the ILC Symposium.