1. Historic View of Lobular Carcinoma Is Challenged by New Evidence
2. First International Lobular Breast Cancer Symposium Sparks New Patient Advocacy
- Patient advocates were hungry for quality information about their disease which was often omitted in breast cancer educational resources. This left patients without the tools to be informed partners in their self-care, lacking even basic information such as unusual sites where lobular tumors can spread and symptoms of recurrence to report to their treating physicians.
- Patient advocates expressed frustration and lack of confidence in standard of care imaging and therapies that were primarily designed and trialed on patients with IDC, but were not always the best fit or the efficacy was unknown in patients with ILC.
- Advocates were eager to identify and bridge gaps between research and patients and support studies and trials focused on ILC.
- Researchers and clinicians found that they needed critical input from advocates to identify the most important needs for patients.
- Researchers and clinicians needed the patient voice to advocate with funders, institutions and organizations to make the case for more ILC-focused research and to raise awareness of this disease in the broader breast cancer and research community.
3. Role of Patient Advocacy in Lobular Breast Cancer
4. Launching of the Lobular Breast Cancer Alliance and Global ILC-Focused Advocacy Efforts
- Lobular Breast Cancer UK (LBCUK) (Lobularbreastcancer.org.uk) is a patient-advocate-driven organization in the United Kingdom that has charitable status and a website. LBCUK’s goals are to drive education, research, policy change and ensure patient support is available for patients with ILC within outside organizations and support services. LBCUK will focus on informing and supporting patients to be their own best advocates, partnering with researchers, representing ILC advocacy at conferences and developing and driving funded lobular research programs. LBCUK has a Scientific Advisory Group involving researchers and clinicians from institutions across the UK working in partnership with the charity who provide scientific and medical advice and guidance and the opportunity to develop longer-term ILC-focused research programs.
- Lobular Ireland (LobularIreland.com) is a network of ILC advocates and breast cancer researchers from the Royal College of Surgeons, University College Dublin with a clinical advisor from Cancer Trials Ireland. Collectively, they advocate for more research into ILC and raise awareness about ILC. Lobular Ireland’s goals are to partner with researchers, build patient awareness and have ILC representation at key breast cancer conferences and seminars.
5. Elements of Successful Researcher and Patient Research Advocate Collaboration
- Timing and opportunity: As evidence mounted that ILC was a different disease, the research community realized there were unique aspects of ILC that deserved and required more research which would benefit from advocate participation. The new interest in research coincided with early communication and organization among patients with lobular breast cancer on early social media platforms, leading to strong advocate attendance at the 1st ILC Symposium and motivated engagement after the conference.
- Leadership: The prior professional experience of LBCA’s founding leader Leigh Pate in successful large-scale political and issue advocacy campaigns provided a strong foundation in organizing, strategic communications and management of volunteers and coalitions. Scientific Advisory Board founder and past-chair Steffi Oesterreich PhD leveraged her experience through various foundations and institutions, and passionately partnered with advocates to guide LBCA’s interactions within the breast cancer research community. This advocate/researcher partnership opened doors, lent professionalism and credibility to LBCA’s public content and efforts, and led to the engagement of a strong network of committed scientific advisors from diverse institutions as well as broad breast cancer organizational support.
- Partnerships: Importantly, LBCA’s leaders developed a strong working relationship and a level of trust that allowed them to pursue an ambitious agenda. LBCA’s early organizational structure was never dependent on one individual to carry the efforts, was consensus based and included a strong co-coordinator and advocate leader in Lori Petitti and a volunteer advocate steering committee with diverse backgrounds and skills.
- Collaborations: A founding tenet of lobular advocate leaders internationally is grounded in collaboration—the belief that patient advocates, clinicians and researchers must work together to overcome challenges in lobular research, create change and advance patient-centered research initiatives.
- Commitment to scientific review: LBCA developed educational content on lobular breast cancer, working with Scientific Advisors who lent their expertise, making LBCA a reliable resource within the breast cancer community and to our community partners.
- Dedicated communications platform: LBCA’s website and communications platforms, as well as a growing network of advocates worldwide, provide a center of information on ILC. This benefits not only patients looking for education and resources, but researchers who have a platform to share information with an audience specifically interested in ILC.
6. Challenges and Opportunities for Researchers, Clinicians and Patient Advocates to Accelerate ILC Research
6.1. Challenge #1: Define ILC Research Priorities
6.2. Challenge #2: Design Clinical Trials Focused on ILC and Share Trial Participation Opportunities
6.3. Challenge #3: Standardize Diagnosis of ILC
6.4. Challenge #4: Collect Data and Samples from Patients with ILC
6.5. Challenge #5: Assemble and Communicate Up-to-Date and Accurate Educational and Research Information on ILC
6.6. Challenge #6: Integrate ILC into Cancer Conferences, Professional Education and Cancer Organizations
6.7. Challenge #7: Establish a Collaborative, Coordinated Worldwide ILC Research Strategy
6.8. Challenge #8: Encourage Funding Focused on ILC Research
How Researchers, Clinicians and Advocates Can Work Together to Move Lobular Research Forward in the Future
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