Lobular Breast Cancer UK

Lobular Breast Cancer UK

At a glance


  • Health and well being / research and care

Other details

Organisation type: 
Geographical remit: 
National - Britain


We are the only UK charity dedicated to improving outcomes for people with a Lobular Breast Cancer diagnosis.

Launched in September 2021, we are committed to ensuring that everyone with a Lobular diagnosis lives, and lives well.

We do this through providing much needed information about Lobular that enables patients to advocate for themselves; clinicians to understand more about this disease; and the general public to be aware of its unique signs and symptoms.

We support and connect patients through Wellbeing workshops and online seminars, ensuring that the fear and loneliness of a diagnosis is reduced. By working in partnership with larger charities, such as Breast Cancer Now, we ensure that they remain informed of the particular needs of Lobular patients who seek out their support services.

Despite our small size, we work internationaly and collaborate with patient advocacy groups, clinicians, researchers, charities and organisations around the world. We support for expert Lobular clinicians and researchers to gain funding from grant bodies and drive forward Lobular research, and have worked with De Montfort University, Kings College London, the University of Edinburgh, the Institute of Cancer Research (ICR), the Royal Marsden, Leuven University and the University of Pittsburgh. 

We believe that working in this supportive way is the best use of our limited resources as a volunteer-led small charity. We have been co-author on a number of published Lobular specific research studies published in journals.

We conduct our own patient-led research focused on the needs of Lobular Patients, and the impacts of a Lobular diagnosis. This has been presented at UK and international conferences.

Despite the research evidence showing large differences, Lobular is treated the same as the more common Ductal Breast Cancer. We campaign for its recognition as a distinct disease and the development of specific personalised treatment to ensure better outcomes for patients. 

15% of all Breast Cancers diagnosed are Lobular Breast Cancer and 22 people in the UK are diagnosed with this disease every day.

Due to the lack of specific diagnosis and treatments, we are often diagnosed at a later stage and with larger tumours. This impacts on both the patient and the more comprehensive treatments that they require. Longer term outcomes for people with a Lobular diagnosis are worse. We want to ensure that everyone with a Lobular diagnosis lives and lives well.


We participate in Lobular specific research with clinicians and researchers, ensuring that it meets the needs of patients and increases knowledge into this distinct disease.

We provide support for patients through the provision of accurate and evidence based information that is designed with patients. We ensure that key breast cancer charities are up to date and informed about Lobular research. For example, we advised Breast Cancer Now on the recent updating of their Lobular brochure and provide workshops for their Helpine nurses. 

We raises awareness and understanding of Lobular and how it presents and behaves differently through communications campaigns, such as our #22ADayUK campaign. 

We raise funds through our #WalkingOurMammaries fundraising initiative, walking mountains and mounds that look like and/or are named after boobs.

We work with clinicians, researchers and other bodies to ensure that the treatments recommended for Lobular in the UK are in line with the latest research. we do this through the delivery of campaigns and lobbying on behalf of patients. 

In partnership with De Montfort University, we conduct our own research into the specific needs, concerns and impacts of a Lobular Breast Cancer diagnosis.

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