Invasive lobular carcinoma (ILC), also known as lobular breast cancer, can metastasize many years after it is initially diagnosed. Sometimes the ILC metastasis goes to unusual parts of the body. Due to some of ILC’s unique features, there may be challenges in imaging and treating metastatic ILC and in the availability of clinical trials for patients with metastatic ILC. The Lobular Breast Cancer Alliance (LBCA) is committed to pressing for more research on and raising awareness about all stages of ILC. This month, and in recognition of Metastatic Breast Cancer Awareness Day on October 13, we highlight several ways LBCA focuses on metastatic ILC:

1. Posting Information about Metastatic ILC on the LBCA Website

Last year, in honor of Metastatic Breast Cancer Awareness Day, LBCA launched a new page on our website specific to metastatic ILC.  The page includes a Sites and Symptoms of Metastatic ILC graphic, information on clinical trials, and videos specific to ILC.

2. Partnering with Metastatic Breast Cancer Organizations

LBCA is proud to work with many organizations providing resources and information to the community of individuals living with metastatic breast cancer, including metastatic ILC. Here are some recent collaborations:

• As a member of the Metastatic Breast Cancer Alliance (MBCAlliance), information about LBCA and our resources are available on MBCAlliance’s recently relaunch website.
• Metastatic Trial Talk is currently featuring an article about metastatic ILC and seven of our current and past LBCA Scientific Advisory Board members.
• LBCA is also highlighting a new video about the importance of metastatic breast cancer clinical trials that can be found on the Metastatic Trial Talk website.

3. Ensuring Information about Metastatic ILC Research Is Included in the LBCA Publications Library

LBCA has compiled a collection of research publications related to lobular breast cancer in its ILC Publications Library. This includes at least 20 studies specific to metastatic ILC. The library is updated regularly with the help of volunteers and members of LBCA’s Scientific Advisory Board.

4. Raising Awareness about People Living with Metastatic ILC through Surveys and Presenting Our Work at SABCS 2022

In June LBCA conducted a survey of individuals living with metastatic ILC.  We recently received word that our abstract that discusses the findings from this survey, which was submitted to the San Antonio Breast Cancer Symposium (SABCS), has been accepted for publication. This means that we will be preparing a poster and presenting it at SABCS22. LBCA looks forward to sharing what we gleaned from many of you living with metastatic ILC at SABCS22 in December and when our abstract is published in the special SABCS journal issued in the spring of 2023.

5. Sharing the Stories of People with Metastatic ILC

LBCA’s ILC Stories features women with lobular breast cancer who wish to share their personal stories. Recently we have shared the stories of women with metastatic ILC such as Jeri, Leanne, and Lisa. ILC Stories are consistently the most read portion of our newsletters and allow others to learn from their experiences with this disease.

LBCA will continue to look for new ways to bring attention to metastatic ILC and educate those living with this diagnosis not just in October but throughout the year.