Lobular Breast Cancer in the Spotlight Across Europe
They raised awareness, shared knowledge and connected communities around lobular breast cancer (invasive lobular carcinoma, ILC). From webinars and symposiums to in‑person meetups and educational initiatives, here’s an overview of the month’s events.
Jump to: The Netherlands | United Kingdom | Norway | Ireland | France
The Netherlands
In October, our Dutch patient advocate Rian Terveer, who also serves as a patient advocate for the Dutch Breast Cancer Association, helped to co-create two major events: the “ILC Webinar” and the “National Breast Cancer Symposium”.
Alongside with fellow patient advocate Esther Geven, she hosted an information stand at the Symposium and met with university students to discuss lobular breast cancer.
These events brought patients, healthcare professionals and students together, raising awareness and fostering meaningful conversations, while helping to support vital lobular breast cancer research in the Netherlands through the Dutch Lobular Breast Cancer Foundation.
Webinar: Global Lobular Awareness Day (15 October)
330 registrations – researchers, clinicians, advocates and patients
To mark Global Lobular Awareness Day on 15th October, the Dutch Lobular Breast Cancer Foundation organised a major online webinar in collaboration with Utrecht Medical Center, Erasmus Medical Center, the Netherlands Cancer Institute-Antoni van Leeuwenhoek, and Maastricht UMC+.
The programme covered:
- The biology of ILC
- Imaging and the latest developments
- Options for personalised treatment
The response was overwhelmingly positive. Many participants shared how empowering it felt to learn more about lobular breast cancer and how valuable it was to see increased engagement among healthcare professionals.
Feedback from participants
Great that you have organised another valuable meeting. Thanks!
I would like to thank the people who put a lot of time and energy into organising the webinar. My compliments!
Many thanks also to the medical specialists who took the time to share their knowledge, which was incredibly valuable.An extra bonus: my nursing specialist was also there, after I forwarded the link. It’s great to see knowledge being shared and taken on board.
Building on this momentum, the team plans to host a live symposium next year.
Watch the recorded webinar here.
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Rian Terveer-Couperus
Esther Geven
Breast Cancer Symposium
“A Woman Goes to the Doctor”
(Frisian Medical Centrum)
130 participants – patient advocates and healthcare teams
This in-person symposium in Leeuwarden, was co-created by patient advocate Rian Terveer and Roelie, Wiepkje, Wikje and Marthe from the Frisian Medical Centre.
Thanks to their combined expertise, visitors received clear, helpful answers, sparking many meaningful conversations throughout the day.
As part of the day’s event, the Dutch Lobular Breast Cancer Foundation hosted a dedicated information stand. Rian and fellow patient advocate Esther Geven, offered clear, accessible information about lobular breast cancer. Visitors could ask questions and pick up patient information leaflets about ILC in multiple languages.
These exchanges raised awareness and knowledge of lobular breast cancer and deepened mutual understanding between patients and healthcare professionals.
Feedback from participants
It’s great that you brought patients and professionals together, and that there was plenty of time for questions.
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The Lobular Experience within University Master/Bachelor Program
Bridging Science and Patient Reality
(Utrecht Medical Centre, 17 October)
Patient advocates Esther Geven and Rian Terveer hosted an engaging session with students from the Utrecht University’s Biomedicine Student Research Lab for an open and honest conversation about living with lobular breast cancer.
The students explored the real-world challenges behind the science, and Esther and Rian offered insights from their personal experience that brought the research topics to life.
Afterwards, several students shared how deeply the stories had resonated with them and how their view of breast cancer research had shifted – and for some, even sparked an interest in pursuing a future career in ILC research.
Feedback from students
It touched me so deeply that I want to dedicate myself to helping patients with lobular breast cancer.
The session resonated so strongly that it will now take place on a regular basis.
United Kingdom
This October, our UK advocate Claire Turner and Lobular Breast Cancer UK brought together patient advocates, clinicians and researchers to share insights and experiences, as well as the first NHS data on lobular breast cancer.
London Lobular Breast Cancer Research Partnership Day
The 3rd Lobular Breast Cancer Research Partnership Day, hosted by Lobular Breast Cancer UK, took place at The Institute of Cancer Research (ICR), Chester Beatty Laboratories.
The day brought together clinicians, researchers and patient advocates, combining cutting-edge science with lived experiences of people affected by lobular breast cancer – creating an inspiring space for learning, sharing and collaboration.
Presentations and discussions covered:
- Current challenges and latest research in ILC
- Leptomeningeal disease and its clinical relevance
- Advances in imaging, including whole-body MRI
- Updates on ILC clinical trials and translating research into care
- The importance of patient samples in advancing research
- Patient perspectives and advocacy
The programme was developed in collaboration with Guy’s & St Thomas’ Hospital, Lobular Breast Cancer UK, St George’s Hospital, the Institute of Cancer Research and the Royal Marsden, ensuring a comprehensive mix of scientific knowledge, clinical expertise and patient experience.
The impact of the day clear: 100% of patients attending the day stated that it increased their knowledge and understanding of Lobular Breast Cancer, and they all came away wanting to get involved in research as advocates.
Feedback from patients
Networking with other women and health professionals made me feel less alone.
The dedication of the researchers and the inspiration, hope and special interest really came through, as much as the actual scientific information.
Reflections from Claire, Lobular Breast Cancer UK
Our Research Partnership Days are essential to emphasise the importance of the patient voice in driving forward Lobular research and to demonstrate the commitment and drive around Lobular research in the UK
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Claire Turner
First-Ever Full Year NHS England Statistics on Lobular Breast Cancer
This October, working with the National Disease Registration Service (NDRS), Lobular Breast Cancer UK have released the first ever annual data from NHS England on Lobular Breast Cancer.
This collaboration with NDRS will provide crucial insights for patients, clinicians and researchers and provide a benchmark to understand who is being diagnosed with Lobular, track changes in diagnosis and disease progression, design future studies and develop appropriate changes in clinical practice.
The data clearly shows that Lobular is not a rare disease and affects around 15% of everyone with a breast cancer diagnosis in England.
Annual updates are planned to track trends over time, with 2023 data expected later this year.
Outlook from Claire, Lobular Breast Cancer UK
Our next steps are to access the data for Northern Ireland, Scotland and Wales, and to work alongside other charity partners to obtain enhanced data for metastatic disease.
Find the full report and download the factsheet here.
Norway
In Norway, our patient advocate Tone Lien hosted the country’s first in-person meeting for people living with lobular breast cancer – a significant step towards establishing a national patient network.
The gathering took place at the Deichmanske Library in Bjørvika, Oslo, and brought together fifteen patients for an evening of connection, support and shared purpose.
The meeting provided a safe and welcoming environment to discuss:
- The challenges ILC patients face
- How patient voices can drive better care and awareness in the future
The atmosphere was warm and encouraging. It gave patients a sense of community and a space to share experiences, reassuring everyone that they are not alone.
This was only the beginning!
A follow-up meeting has already been scheduled for 27th November at Deichmanske Library, and plans are underway to involve researchers and clinicians in future activities.
One participant summed it up perfectly:
A very positive meeting, filled with warmth and the feeling that everyone wants to contribute to a better future. We need to join forces.
Tone Lien
Ireland
In Ireland, October saw strong advocacy efforts from Lobular Ireland and patient advocate Siobhán Freeney who continue their national awareness and educational work. Throughout the month, they’ve been focusing on the upcoming National Breast Cancer Screening Health Technology Assessment, which will include the assessment of two public submissions written by Lobular Ireland in 2022 and 2023.
These submissions incorporate sections on the unique biology of invasive lobular carcinoma, the need for earlier diagnosis particularly for the cohort of women who have dense breasts, essential and appropriate imaging.
Lobular Ireland has also been appointed to participate in the Breast Cancer Screening Health Technology Assessment Expert Advisory Group, with the process to commence shortly.
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Siobhán Freeney
On 15th October, Lobular Breast Cancer Alliance (LBCA) patient advocate Ciara Mohan-Gustafson, originally from Drogheda and now living in Michigan, USA, hosted a special gathering at Millmount Tower.
She shared her personal lobular breast cancer journey, raised awareness of the biology of ILC and distributed educational materials, creating a meaningful occasion for everyone who attended.
In a touching tribute, Ciara was honoured by the district council as a “Community Champion” in recognition of her dedication to raising awareness and supporting women affected by lobular breast cancer.
Ciara is passionate about spreading the word, about securing the funding to tackle this form of cancer and talking to doctors, nurses and advocates who ‘offer strength when needed most.’
Ciara’s advocacy has an impact not only in Ireland but also across the world, showing how patient leadership can drive change globally.
France
Education and Patient Perspectives
In celebration of Global Lobular Awareness Day, Institut du Cancer des Femmes (Institut Curie) hosted a webinar in French with subtitles, bringing together patient perspectives and scientific expertise.
Highlights included:
- Françoise Feger (Collectif Triplettes Roses)
Sharing insights from her graphic novel “Cancer Royal”, which documents her journey with triple-negative lobular breast cancer. - Laure Guéroult-Accolas (Patients en Réseau)
Introducing the French online patient network that connects individuals and their families affected by cancer, providing a supportive, expert-moderated space to share experiences and knowledge. - Caroline Malhaire and Romain-David Seban (Institut Curie)
Discussing advances in imaging for lobular breast cancer under the theme ‘Seeing better to treat better’.
The event emphasised the importance of visibility, community and continued research for lobular breast cancer in France.
Celebrating Advocacy Across Europe
From webinars and patient meet-ups to symposiums and pink-lit landmarks, October 2025 demonstrated the strength of patient advocacy and community.
Across Europe, patient advocates worked tirelessly to:
- Raise awareness of lobular breast cancer
- Share knowledge and educational resources
- Build supportive networks for patients
- Promote research and collaboration
The events highlighted here are just a small selection – countless other activities took place throughout the month.
Every conversation, every gathering and every effort counts.
Together, these actions are helping to raise awareness of lobular breast cancer, improve understanding of it and ensure it is prioritised – proving that even small steps can drive meaningful change.
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