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Information for Patients and Advocates

The Lee/Oesterreich Lab at UPMC Hillman Cancer Center and the University of Pittsburgh – led by Drs. Steffi Oesterreich and Adrian Lee – has been a driving force behind research and advocacy in Invasive Lobular Carcinoma (ILC). Recognizing that ILC behaves differently than other breast cancers, they have launched global efforts to improve awareness, research, and care for this unique subtype.

There is growing agreement across research and clinical communities that ILC differs meaningfully from invasive ductal carcinoma/no special type (IDC/NST) in biology, behavior, and—likely—optimal management. Hallmark features include near-universal loss of E‑cadherin (CDH1) with distinctive single‑file growth, discohesive morphology, unique metastatic patterns, and imaging/response profiles that often diverge from IDC/NST. Recent reviews and studies emphasize under‑representation of ILC in trials, different immune landscapes, and the need for ILC‑specific analyses.

Current clinical trials for ILC (as of July 28, 2025)

The Lobular Breast Cancer Alliance (LBCA) maintains the most up‑to‑date public list of ILC‑focused and ILC‑enriched studies. As of today, LBCA lists 8 open ILC‑specific/enriched trials or registries worldwide (7 US‑only; 1 outside the US).

Where to find all ILC trials

Advocacy

What Advocacy Means in Lobular Breast Cancer

Advocacy in breast cancer goes beyond public awareness; it is patients, caregivers, scientists, and clinicians working together to change practice and policy—from securing research funding and shaping clinical-trial designs to ensuring that every newly diagnosed person can find accurate, subtype-specific information and support.

Lobular Breast Cancer Alliance – LBCA

The Lobular Breast Cancer Alliance (LBCA) began in 2016 after two-time cancer survivor and public affairs consultant Leigh Pate attended the first International Lobular Breast Cancer Symposium in Pittsburgh. Confronted with the scarcity of resources and research on invasive lobular carcinoma (ILC), Pate teamed with researchers—including Dr. Steffi Oesterreich and Dr. Rachel Jankowitz—to draft a white paper that outlined urgent needs and to launch the first LBCA website. She then built the organization’s infrastructure, recruited a scientific advisory board, and created patient and clinician-friendly educational materials. By late 2017 LBCA was publicly active, with Pate serving as founding coordinator and director through 2020 and cementing the group’s mission to advance ILC research and advocacy. (ILC), Pate teamed with researchers—including Dr. Steffi Oesterreich and Dr. Rachel Jankowitz—to draft a white paper that outlined urgent needs and to launch the first LBCA website. She then built the organization’s infrastructure, recruited a scientific advisory board, and created patient‑ and clinician‑friendly educational materials. By late 2017 LBCA was publicly active, with Pate serving as founding coordinator and director through 2020 and cementing the group’s mission to advance ILC research and advocacy.

History:

September 2016 – UPMC Hillman Cancer Center, Pittsburgh, PA

The 1st International Invasive Lobular Breast Cancer (ILC) Symposium convened ~130 researchers, clinicians, and 30 patient advocates from around the world. During an evening advocate roundtable, participants drafted a “white paper” that outlined urgent needs—better imaging, ILC-specific clinical trials, and a unified patient voice.

Out of that discussion, a handful of advocates—including Julia Levine, Leigh Pate, and Elizabeth Viggiano—committed to building a permanent organization.

2017 – Formal launch of the Lobular Breast Cancer Alliance (LBCA).

The group incorporated, created a scientific advisory board, and began publishing plain-language summaries of ILC research and a curated list of ILC-focused clinical trials.

LBCA Today

The Lobular Breast Cancer Alliance (LBCA) is recognized worldwide as the flagship, patient led nonprofit devoted to invasive lobular carcinoma (ILC). It empowers the ILC community through comprehensive education—offering webinars, plain language fact sheets, and live conference coverage—while also advancing science by channeling research dollars into pilot grant programs in partnership with the Breast Cancer Research Foundation and other funders. LBCA’s website features the only continuously updated navigator for ILC-specific or ILC enriched clinical trials, helping patients and clinicians quickly find relevant studies. In addition, the organization partners with leading academic centers to convene the biennial International ILC Symposium, hosted at Dana Farber in 2019, virtually in 2021, and most recently in Leuven (Belgium) in 2024, ensuring that the latest discoveries and challenges in lobular breast cancer research remain front and center.

Local Advocacy: Pittsburgh Roots

  • The original planning team drew heavily from Pittsburgh-area advocacy networks, including the Breast Cancer Research Advocacy Network (bcRAN). Local advocates still help organize symposia, lobby Pennsylvania lawmakers, and mentor newly diagnosed patients.
  • Ongoing collaborations with UPMC Hillman Cancer Center and the Lee/Oesterreich laboratory have led to two investigator-initiated ILC clinical trials now recruiting in Pittsburgh.

“Other” Voices & Global Momentum

  • European Lobular Breast Cancer Consortium (ELBCC) integrates advocates across Europe to press for ILC-specific grants and multi-institutional studies.
  • National groups in Canada and Australia now include ILC patient-representatives, reflecting the worldwide rise of lobular-specific advocacy.

ILC Research with Patient Advocates

The Leigh Pate Legacy Project & BCRF Collaboration

To honor the late Leigh Pate, a fierce advocate for lobular research, the Lee/Oesterreich Lab partnered with the Breast Cancer Research Foundation (BCRF) to establish the Leigh Pate Living Biorepository. The goal is to establish a biobank of patient-derived organoids (PDO).

Global ILC Survey & Research Agenda

In collaboration with international partners and patient advocates like Leigh Pate, Steffi and Adrian co-led the first International ILC Research Survey, collecting input from nearly 1,800 stakeholders worldwide. The findings, published in NPJ Breast Cancer, now guide research priorities across basic science, clinical trials, and patient-centered care for lobular breast cancer.

Read the research agenda:

• Pate L, Desmedt C, Metzger O, Burgess Hutcheson L, Turner C, Freeney S, Oesterreich S How Researchers, Clinicians and Patient Advocates Can Accelerate Lobular Breast Cancer Research. Cancers (Basel). 2021 Jun 22;13(13):3094. doi:10.3390/cancers13133094. PMID: 34206261

• Oesterreich S, Pate L, Lee AV, Chen F, Jankowitz RC, Mukhtar R, Metzger O, Sikora MJ, Li CI, Sotiriou C, Shah OS, Koorman T, Ulaner G, Reis-Filho JS, Davidson NM, Van Baelen K, Hutcheson L, Freeney S, Migyanka F, Turner C, Derksen P, Bear T, Desmedt C. International survey on invasive lobular breast cancer identifies priority research questions. NPJ Breast Cancer. 2024 Jul 20;10(1):61. doi: 10.1038/s41523-024-00661-3. PMID: 39033157; PMCID: PMC11271268.

Hope for OTHERS – (Our Tissue Helping Enhance Research & Science) Tissue Donation Program

The “Hope for OTHERS” program is a patient-driven rapid autopsy initiative that collects metastatic breast cancer tissue after death to support research. It provides well-annotated samples to study treatment resistance and disease progression. The program was built in collaboration with patient advocates and aims to advance understanding of advanced breast cancer.

How to Get Involved:

Research Participation & Clinical Trials

Raise Awareness Through Storytelling

  • Personal stories shape how ILC is perceived in the public and medical communities.
  • LBCA ILC Stories
  • Share on social media, blogs, or podcasts
  • Speak at events through NBCC, LBCA, or your care center

Additional Advocacy Resources

  • LBCA – Training, events, and research collaborations
  • Susan G. Komen – Public policy and patient support
  • NBCC –Project LEAD education & legislative efforts:

ILC Meetings:

International Invasive Lobular Breast Cancer (ILC) Symposium

Dr. Steffi Oesterreich co-founded the International Invasive Lobular Breast Cancer (ILC) Symposium, the first and only scientific meeting dedicated entirely to ILC. Held every 1–2 years in rotating locations, this meeting unites researchers, clinicians, and patient advocates to:
– Present the latest scientific discoveries
– Define clinical and research priorities
– Foster global collaboration and inclusion of patient voices

More info: http://ilcsymposium.com/

ILC Globmob

GlobMob is a patient advocate organizing committee for the ILC Symposium, bringing together a diverse group of global voices to ensure patient perspectives are integrated into the event. It features leaders like Lori Petitti (BCRF), Claire Turner (LBCUK), Siobhan Freeney (Lobular Ireland), Laurie Hutcheson (LBCA), and others from across Europe, North America, and beyond.

Scientific symposia including ILC-topics

San Antonio Breast Cancer Symposium (SABCS)
– When: Every December
– Where: San Antonio, TX & virtual
– Why: ILC has gained increasing presence with talks, posters, and patient advocate sessions

Great Lakes Breast Cancer Symposium
– When: Every Fall
– Where: Midwest USA (hybrid)
– Why: Regional research showcase with ILC representation and patient involvement

ESMO Breast Cancer Congress
– When: Every Spring
– Where: Europe
– Why: Features lobular-specific updates and international research presentations