Welcome to the
European Lobular
Breast Cancer Advocates
Your Title Goes Here
In Europe 576,300 Breast Cancers were diagnosed in 2022.
86,500 (15%) were Lobular Breast Cancer.
Our Goals
1. Establish Common Research Priorities:
- Identify key research areas to advance understanding of Lobular Breast Cancer (ILC).
2. Increase Education and Awareness:
- Educate and raise awareness about Lobular Breast Cancer among patients across Europe.
3. Advocate for Policy Recognition:
- Work towards the recognition of Lobular Breast Cancer as a distinct disease in EU policy.
4. Enhance Education for Healthcare Practitioners:
- Provide education on Lobular Breast Cancer to primary healthcare practitioners to improve early detection and management.
5. Foster Collaboration:
- Strengthen partnership with leading ILC-dedicated medical professionals and researchers.
Our Patient Advocates
Siobhán Freeney
Ireland
Lobular Ireland
Silvia Knoll
Austria
Tone Lien
Norway
Rian Terveer-Couperus
Netherlands
Stichting Lobulair Borstkanker
Hélène Bonval
France
Claire Turner
United Kingdom
Lobular Breast Cancer UK
Esther Geven
Netherlands
Stichting Lobulair Borstkanker
Gabrielle Beck
Netherlands
Lejla Cengic
Germany
Andrea Lener
Isle of Man
Lori Petitti
Consultant Advocate, USA
Independent Advocate
Our Global Partners
European Lobular Breast Cancer Consortium
The ELBCC was founded in 2018 with the intent to increase the understanding of the biological cues that underpin Invasive Lobular Breast Cancer (ILC). The main aim is to translate this knowledge into succesful implementation for improved diagnosis, disease monitoring, treatment and prognosis of ILC.
ELBCAdvocates were formed within the ELBCC COST Action LOBSTERPOT (CA19138), an EU funded initiative to facilitate Consortium building
To achieve its goals, the ELBCC has developed a multidisciplinary platform to bring together discovery scientists, translational researchers, clinical experts, and patient advocates. Together with global peers, they organize regular meetings and a biannually International ILC Symposium.
The joint ELBCC/ ELBCAdvocates approach is central and key in raising awareness for ILC, informing patients on the basics of ILC and the latest developments, and assuring an effective approach towards better diagnosis, treatment and disease outcome.
Our Scientific Advisory Group
Christine Desmedt, PhD
KU Leuven
Belgium
Anne Vincent-Salomon, MD, PhD
Institut Curie, Paris
Cathrin Brisken, MD, PhD
EPFL Lausanne
Switzerland
Patrick Derksen, PhD
UMC Utrecht
Netherlands
Chris Lord, PhD
Institute of Cancer Research
London
Our International ILC Advocacy Partners
Lobular Breast Cancer Alliance
The Lobular Breast Cancer Alliance is a US based organization whose mission is to
- make all who are touched by Lobular Breast Cancer (ILC) aware of its unique characteristics and the critical need for more ILC research
- be the go-to source for information on ILC studies, clinical trials and educational tools
- foster partnerships among patients, scientists, clinicians, and breast cancer organizations to increase dialogue about ILC and research advocacy
- fund vital ILC research
Lobular Breast Cancer UK
At Lobular Breast Cancer UK we work to save more lives by unlocking the challenge that is Lobular Breast Cancer.
Our vision is that Lobular Breast Cancer is understood comprehensively, diagnosed effectively, treated uniformly, and patients have access to support across the UK.
Lobular Ireland
Lobular Ireland is a network of patient-advocates, with Lobular Breast Cancer (ILC), working closely alongside a scientific board of breast cancer researchers and clinicians.
Lobular Ireland advocates for research into ILC and aims to raise awareness about Invasive Lobular Breast Cancer.
Stichting Lobulair Borstkanker
We are a Dutch foundation, founded in late 2024, with the goal to raise money, awareness and education about lobular breast cancer.
Our mission is to improve health care (diagnosis, treatment, follow up) and survival rates for lobular breast cancer patients, with better quality of life.
About Lobular: Background
1. Introduction:
- First mentioned in 1941 by Foote and Stewart.
- Classified as the most common special type of breast cancer by the World Health Organization.
2. Prevalence:
- 15% of all breast cancer diagnoses are Invasive Lobular Cancer (ILC).
- 86,500 European women were diagnosed with Lobular Breast Cancer in 2022.
3. Characteristics:
- It is an often luminal breast cancer primarily expressing estrogen receptors.
- Tumors rarely form palpable lumps.
- ILC cells grow in a distinctive linear pattern.
- Loss of cell-to-cell adhesion through E-cadherin inactivation enables infiltration of distant organs as single cells, remaining dormant for extensive periods.
4. Challenges in diagnosis:
- Up to 30% of invasive lobular carcinomas are not identified on mammograms.
- Ultrasound often fails to detect ILC, and detection is often delayed.
5. Challenges in Treatment:
- Difficult to treat when endocrine interventions fail.
- Metastasizes to unusual sites: bone, peritoneum, ovary, digestive tract, skin, eyes, leptomeninges
Challenges
- Lack of standardized diagnostic or treatment protocols for Lobular Breast Cancer (ILC) across Europe.
- Diversity of languages in Europe poses a challenge in translating clinical information for patients.
- Operating as an organization with a patient advocate representative in each European country.
- Diverse healthcare systems, policies, and economic structures across European countries.
- Not all European countries are members of the EU.
- Ensure appropriate support and finance for ELBCAdvocates to attend major research and clinical conferences.
What we do: Achievements
ELBC Advocates joined the European Lobular Breast Cancer Consortium meeting in Leuven 2019 – the first time that ILC Patients attended a meeting of the consortium
Next steps
1
Establish European Charitable Status for ELBCAdvocates
2
Work to ensure that ILC is included in Clinical Trials
3
4
Find ILC funding
5