LBCA staff and volunteers (including patient advocates and scientists) have brainstormed on various topics about patients’ experiences in treatment for invasive lobular carcinoma (ILC). We have developed survey instruments, analyzed anonymous data, written abstracts, and presented posters for the past three years at the largest breast cancer conference in the world, the San Antonio Breast Cancer Symposium (SABCS), which takes place each year in December. This activity builds from the roots of the early LBCA, when the group’s fully volunteer led team produced a poster about the formation of LBCA (2017), and another about how respondents confirm the value of the LBCA website and how it addresses an unmet information needs (2019). LBCA’s patient experience surveys have focused on experience with imaging (2021), living with metastatic ILC (2022), and last year on experience with surgery and surgical decision making (2023). 

Our goal in creating and sharing the results of our lobular patient experience posters is twofold.  The presentations enable us to use a significant public platform for sharing the issues that patients with lobular breast cancer experience.  And through increasing exposure to our issues, we can motivate researchers and clinicians who are the primary breast cancer conference attendees to focus their research on addressing the issues raised.

As the ILC patient advocate community grows, and more and more of us are seeking to educate and raise awareness of lobular breast cancer issues, our voice grows louder. We become that much closer to research discoveries of lobular specific treatments. An example of this happened recently when LBCA Patient Advocate Advisory Board member, patient advocate fellow with AACR, and poster co-author Gitte Joergensen, PhD, had the opportunity to present the findings of our most recent survey on ILC and surgical decision making at a second major cancer conference this fiscal year as part of her LBCA advocacy and her work with her fellow program. 

In our 2023 poster, 1,426 respondents with ILC who underwent surgery reported high rates of uncertainty about the accuracy of imaging, high rates of repeat surgery, bilateral mastectomies, and positive margins. We had found that respondents have varying degrees of understanding of how different surgical choices, such as mastectomy vs. lumpectomy might affect long term survival. Many indicated that their concerns about how well a recurrence of ILC might be detected with current imaging modalities influenced their surgical decision making. The survey results also conveyed that patients experience real challenges in having their lobular tumors staged accurately before surgery. Read more here. The results of our survey presented in 2019 legitimized the need for LBCA to form and be the central source for ILC information for patients on the web. Sharing these results then helped provide a catalyst for LBCA to grow and expand its resources. 

With the opportunity to present results of this 2023 poster a second time, to the extremely large AACR audience, we know that the hope, expressed by a majority of the ILC patient respondents has been amplified. And soon, there will be much more research focused on improving imaging and surveillance of ILC.