Local Advocacy for Lobular Breast Cancer
The Lobular Breast Cancer Alliance (LBCA) empowers patients and caregivers to educate others about invasive lobular carcinoma (ILC).
Information on invasive lobular carcinoma (ILC), also known as lobular breast cancer, can be hard to find in traditional breast cancer institutions and organizations. You can educate others about ILC and raise awareness in your community by working with the Lobular Breast Cancer Alliance (LBCA). LBCA supports education advocacy through periodic travel grants made to enable individuals to attend important breast cancer conferences and trainings.
Start or join an LBCA Local Advocacy Team
Launched by LBCA in 2024, Local Advocacy Teams invite ILC advocates who are interested in connecting with others locally. The goal of these teams are to gather those in a common geographic area to further LBCA’s mission through in-person advocacy, developing social connections, and planning educational and fundraising events. If you would like to learn more visit our Local Advocacy Team page and please contact the Local Advocacy Team Coordinator.
Spread the word about ILC
Not all breast cancers form a lump! Share the facts about sneaky ILC on social media, with friends and family, at events, and among your networks to educate others about ILC. Our sample social media posts may be helpful.
Share ILC and LBCA materials with your local organizations, support groups, and at local events. Most of these materials can be found on our ILC Fact Sheet, our FAQs, or our For Patients pages. There is also a flyer about ILC and LBCA available for download.
Watch our Advocate Chat series
Join other patient advocates as LBCA hosts discussions on topics to ensure individuals with a desire to educate others about ILC and to advocate for ILC research have the tools they need to do so.
Watch past sessions here and make sure you are signed-up for our newsletter to receive announcements of upcoming chats.
Share your personal ILC story
Sharing your ILC story is an impactful way to reach others with lobular breast cancer and help raise awareness of the need for more ILC specific research and treatment. Reading these stories is also so important to those going through their own journey with ILC. ILC Stories are featured in the monthly newsletter, on the website and social media (Facebook, Instagram, LinkedIn, Bluesky). You can share your story in written form or as a video, or both. Examples can be seen on the ILC Stories page.
Read the Guidelines on Sharing Your ILC Story and email communications@lobularbreastcancer.org for more information on how to submit it.
Advocacy Through Education
- Connect with others near you to strategize how to spread the word in person together locally.
- Organize lobular education forums and ILC-focused events or activities through your local breast cancer organizations, hospitals, and research institutions.
- Suggest that information about ILC be included in educational materials and on websites that omit or make no distinction between lobular and other cancers.
- Participate in online groups and discussions, and share reliably sourced news and information about ILC. Use our ILC Fact Sheet.
- “Say I have LOBULAR breast cancer” when telling your story. ILC is commonly referred to simply as “breast cancer,” resulting in many people having never heard of lobular breast cancer. ILC lags behind the broader breast cancer community both in education and research. A simple way to educate others that not all breast cancer is the same is to be specific referring to ILC in conversations and interactions with peers, clinicians, or online to spark more conversations and questions about the differences in lobular breast disease. You can also share this flyer about the different breast cancer subtypes.
- Speak up and ask the question, “What about lobular?” when attending breast cancer presentations, webinars, and meetings to engage the conversation and communicate the need to learn more about ILC and advance efficient research
CONTACT US at LATadmin@lobularbreastcancer.org to let us know your great work to spread the word about lobular breast cancer, if you have questions about educating about ILC, LBCA’s ILC materials or connecting with others in your geographic area.
Research Advocacy
You may also be interested in research advocacy, which focuses on involving advocates in cancer research to make sure it reflects patient needs and outcomes. You can learn more about research advocacy by exploring our Research Advocacy Toolkit. You can also go to the Research Advocacy Network (RAN) website and take the free, online, on-demand course, Basics for Research Advocacy.