ILC Research Priorities

The Lobular Breast Cancer Alliance seeks to advance research to improve the diagnosis, treatment and follow-up care of patients living with invasive lobular carcinoma.

The Lobular Breast Cancer Alliance (LBCA) is a national organization, founded by patients, with a network of health care professionals, patient-volunteers and advocates, and breast cancer clinicians and researchers actively collaborating to increase knowledge of invasive lobular carcinoma (ILC), also known as lobular breast caner, and promote and fund ILC research. 

LBCA’s vision is: A world in which lobular breast cancer is found early, treated effectively, and eradicated permanently.

To accomplish our vision and mission, LBCA is guided by five primary goals including one specific to advancing research through ongoing advocacy and funding. LBCA seeks to advance research to improve the diagnosis, treatment and follow-up care of people living with ILC.

Lobular breast cancer is a discrete breast cancer subtype. It is frequently diagnosed at later stages than other breast cancers because it is harder to detect with standard imaging methods. While it is often associated with a good initial prognosis, recent retrospective analyses suggest that overall long-term outcomes of ILC may be worse. Despite these facts and the fact that ILC is the sixth most frequently diagnosed cancer of women in the United States, with approximately 44,000 new cases being diagnosed annually, it is still not well understood and has been understudied. As a result, the current standard of care is the same as for all other estrogen positive breast cancers, though this is not necessarily the best option for all people with ILC.

More ILC research is essential. Patients and researchers have identified priorities for ILC research.

Priority Areas of Focus for ILC Research

Refine therapies for ILC:

Conduct ILC specific clinical trials to refine the most effective therapies for people with ILC and test promising new therapies.

Improve imaging for ILC: 

Develop valid, reliable screening and imaging tools that lead to better early detection and staging of lobular breast cancer and better surveillance for recurrence and improved imaging of metastatic ILC.

Advance targeted therapies: 

Support research to better understand the unique biology of ILC and its metastasis with the goal of developing targeted therapies for ILC.

Build the basic tools for ILC research: 

Develop ILC-specific mouse models, cell lines, and tumor banks, etc., to support basic research on ILC. Integrate lobular and metastatic sites into registries and databases.

Include ILC in Existing Studies: Integrate ILC outcomes into the objectives of appropriate large studies/clinical trials of breast cancer prevention, identification and treatment.

How LBCA Works to Advance Research

Fund ILC research grants:

LBCA is now collaborating with organizations such as Conquer Cancer/the ASCO Foundation and ACCR to solicit applications for, select, and fund early career/investigator ILC grants. LBCA raises funds expressly to support the organization and increase our capacity to sustain existing and fund an increasing number of ILC research grants.

Grant proposals: 

LBCA offers trained advocates who can partner with researchers and assists them in:

  • developing grant proposals
  • providing the patient advocate perspective to the implementation of grants that are awarded
  • providing meaningful support during trials and studies.

Publicize and share research: 

LBCA shares select ILC study and trial results on our website, to our subscriber list, and on social media to share important studies with an audience of stakeholders in lobular breast cancer.

Share information on ILC studies and clinical trials: 

LBCA encourages patients with ILC to participate in clinical trials and publicize information on clinical trials and research studies that include or are focused on ILC that are recruiting participants.

Advocate for ILC research within professional, research, and medical institutions: 

LBCA works with patients to advocate within their own institutions to request that ILC be part of their research programs, and that information about ILC and LBCA is included in disseminated patient information and other breast cancer education and support resources.

Build partnerships with breast cancer organizations to promote ILC inclusion: 

LBCA is partnering with breast cancer organizations around the country and internationally to integrate ILC into existing programs.

Contact us to Collaborate or if you Seek ILC Patient Advocates for your Grant

LBCA welcomes partnerships with researchers, clinicians, patient research advocates, and breast cancer organizations who want to pursue research and integrate lobular breast cancer into their programs and research.

If you are a researcher or breast cancer organization seeking to collaborate, or if you are applying for a grant for research that includes ILC and seek ILC patient advocate participation please contact us at Info@lobularbreastcancer.org

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