Metastatic ILC Information
Learn About Metastatic ILC
The information and materials provided here were compiled for use by people with metastatic invasive lobular carcinoma (ILC) and others with ILC that seek to learn more.
ILC can metastasize many years after initial diagnosis. Because of ILC’s unique features there may be challenges in diagnosis, and differences in imaging, treatment, and clinical trials. LBCA hopes the provided information may be used by individuals to better understand the nuances of metastatic ILC and that it will be helpful in discussions with care teams.
LBCA strives to keep this page current as new information and research findings become available.
Sites and Symptoms of Metastatic Breast Cancer
If you have been diagnosed with lobular breast cancer, it’s important to know where lobular breast cancer can metastasize (spread) and the symptoms. Like patients with invasive ductal carcinoma (IDC), patients with ILC can experience metastases to the bones, lungs, brain, and liver.
However, ILC can also spread to unusual sites such as the gastro-intestinal tract, abdominal lining, reproductive organs, and other unusual sites. ILC can metastasize many years after diagnosis. Report unusual symptoms you may experience to your doctor.
Metastatic Trial Search is an easy-to-use clinical trial matching service developed specifically to meet the needs of people with advanced and metastatic breast cancer. With this service you can match to trials based on breast cancer subtype, including lobular; sites of lobular-specific metastases, biomarkers, and more. Users can view important trial information in a patient-friendly format. Metastatic Trial Search is designed to be used by patients, caregivers, navigators and healthcare providers.
MBCBrainMets.org, a website hosted by SHARE Cancer Support, is an education and resource hub for metastatic breast cancer patients living with brain or leptomeningeal metastases, and their caregivers. It is a place where users can access unbiased expert educational resources, read stories for building community and hope, and be connected to the tools that can assist them in finding better outcomes.
Here All Year Campaign
The Lobular Breast Cancer Alliance partnered with the Metastatic Breast Cancer Alliance for its Here All Year Campaign in July, 2021. Topics included the potential for ILC to metastasize to unusual sites, the imaging challenges of metastatic ILC, existing clinical trials and the challenges that exist in studying the disease, and how biomarkers and inherited mutations can help in the targeting of treatments for individuals with metastatic ILC.
Podcasts and Videos
As mentioned above, there are educational videos and podcasts, ILC- focused topics from past conferences, and videos on ILC Topics being discussed by our Scientific Advisory Board members and other ILC expert researchers available for viewing. The podcasts and videos below may be helpful to those with metastatic lobular breast cancer.
LBCA Scientific Advisory Board (SAB) member Dr. Jason Mouabbi discusses treatment outcomes for lobular breast cancer in a podcast from July 2022.
LBCA Executive Director Laurie Hutcheson, and Founding SAB Chair Dr. Steffi Oesterreich, and Dr. Adrian V. Lee discuss why ILC is so hard to research and what looks promising for the future in an episode of the podcast Our MBC Life.