Visit these organizations and social media groups offering additional support
The Lobular Breast Cancer Alliance (LBCA) wants people with invasive lobular carcinoma (ILC) to get the support they need.
The following are a sampling of breast cancer and other organizations that provide direct support to individuals with ILC, also known as lobular breast cancer. Help provided by these organizations may include peer counseling, helplines, and support groups. They may also provide other services and information.
These organizations provide support to patients with all types of breast cancer but often are adding individuals with ILC to their support staff. This means you may be able to be matched to someone with ILC. We encourage any advocates interested in being a volunteer peer counselor to others with ILC to contact these organizations directly to learn more about their peer counseling training.
This organization provides one-on-one or phone support (1-800-977-4121) for patients and caregivers and matches callers with individuals with similar breast cancer subtypes and treatment experiences. ILC advocates are invited to go through ABCD’s online training to become a Mentor. ABCD also holds a monthly webinar with guest speakers from various breast cancer fields. Learn more about LBCA’s partnership with ABCD.
This organization provides peer support via organized chat boards. It also provides educational links to some lobular specific educational information. They also host an ILC-specific forum.
The American Cancer Society website provides information and services for all cancers including breast cancer. They sponsor support programs for breast cancer patients throughout the country.
This organization hosts a general breast cancer support group and various patient discussion groups regarding metastatic ILC in the gastrointestinal tract and abdomen.
This organization has various information as well as support services for all breast cancers. This includes a helpline. Volunteers with lobular breast cancer are also available to speak with callers at 888-753-5222. You can also subscribe to the Living Beyond Breast Cancer newsletter.
Their mission is to educate, advocate and empower those with metastatic breast cancer. They provide direct support to callers and materials for both education and support. MBCNetwork is funding research to better understand lobular metastasis. You can subscribe to the MBC Network newsletter.
METAvivor has educational materials on research and awareness and peer-to-peer support for metastatic breast cancer patients. You can also subscribe to their newsletter.
This organization has educational tools and support services on the topic of breast cancer.
This organization offers support for breast and ovarian cancers. SHARE partners with LBCA to offer educational webinars on ILC and lobular specific peer support, which are archived on LBCA and SHARE’s website. SHARE’s website includes a Tools and Resources section that houses webinars, videos, and blogs. It also offers support services via helplines and groups, including ILC-specific peer support via its National Hotline (844-275-7427). SHARE’s support for those living with metastatic breast cancer includes various support groups and MBCBrainMets.org, an education and resource hub for metastatic breast cancer patients living with brain or leptomeningeal metastases, and their caregivers. Learn more about LBCA’s partnership with SHARE.
A peer mentor and support program that matches patients or caregivers with trained volunteer mentors who have undergone similar situations. ILC mentors are available.
This organization focuses on supporting younger women (ages 14-45) of all backgrounds, including those at heightened risk, those facing health disparities, and those with less access to care.
ILC Patient Groups on Facebook
LBCA does not administer, moderate or review the content posted in these social media groups.