Invasive lobular carcinoma (ILC) researcher Karen Van Baelen, MD, shared the results of an abstract of a study focusing on ILC research in May at the European Society for Medical Oncology (ESMO) Breast Cancer Annual Congress held in Berlin, Germany. The research poster, titled Reporting on invasive lobular breast cancer in clinical trials and trials investigating gene expression and molecular screening programs: a systematic review, concludes that there has been very little or poorly conducted study of ILC in the majority of clinical trials.

The idea for the study was conceived during a dinner hosted by the Lobular Breast Cancer Alliance (LBCA) during the San Antonio Breast Cancer Symposium at the home of LBCA Board of Directors Member Dr. Deborah Mueller. The conversation over dinner turned to the fact that there are still no lobular-specific treatments and the distressing reality that lobular breast cancer is not being sufficiently or effectively studied in clinical trials.

Soon after the dinner, Dr. Van Baelen and Dr. Christine Desmedt proceeded to conduct a systematic review of the current status of ILC in clinical drug trials. They shared their results and preliminary findings with advocates who had attended the dinner, including LBCA Executive Director Laurie Hutcheson, as well as others in the ILC advocacy and research community worldwide. They also invited them to assist with writing up the results for publication. They and several other ILC researchers became the co-authors of the abstract that was submitted to ESMO and of the poster that was presented at the Breast Cancer Annual Congress.

The poster provided stark evidence that ILC is receiving little focus in clinical trials. It found poor documentation of the inclusion of patients with ILC; a lack of central pathology used in determining study participants’ breast cancer types; and a lack of specific analyses conducted to examine studied drugs’ effects on ILC and its subtypes.

Additionally, the review noted that the definitions of treatment response used in the majority of the clinical trials did not contemplate the unique biology and clinical course of ILC. The clear finding was that in most clinical trials, determinations about efficacy with respect to ILC cannot be accurately drawn.

The authors assert that “ILC deserves much more attention from both clinical investigators and the pharmaceutical industry.”

Dr. Van Baelen, also the recipient of the 2022 Conquer Cancer/Lobular Breast Cancer Alliance Young Investigator Award for ILC, thanked all of the patient advocates involved in drafting the abstract via social media. She wrote, “It was inspiring to make this happen with all of you. Together we will spread the news and get more attention drawn to ILC.”

LBCA was happy to help with this study that has raised more awareness of ILC and contributed significantly to the evidence that ILC needs more research.

This poster was dedicated to the memories of LBCA Founder Leigh Pate and Deborah Mueller, both of whom had passed away by the time the study was conducted.

The poster and the abstract are both available online. A full manuscript will be submitted for publication later this summer or fall.