Lobular Breast Cancer UK

Lobular Breast Cancer UK turns 4! - Lobular Breast Cancer UK On 22 September 2025 we're celebrating our 4th birthday and everything we've achieved as a small, mostly volunteer-led charity.

Happy 4th birthday to us! 🎈 🎉

Read all about what we have done over the last 12 months, thanks to the support of our fundraisers, volunteers and supporters: lobularbreastcancer.org.uk/lobular-brea...

To learn more about #OneCancerVoice and our specific calls for Lobular, visit our website: lobularbreastcancer.org.uk/lbcuk-joins-...

- For better screening programmes and imaging as a priority, as Lobular can be difficult to be seen on mammograms for some patients
- For more clinical trials and for Lobular patients to be proportionately represented and their data to be reported on

As Lobular Breast Cancer is still under-studied and rarely recognised as the distinct disease that it is, we are specifically calling for:
- Lobular Breast Cancer to be recognised as a distinct disease and for appropriate Treatment Guidelines

Yesterday we were proud to join 60 cancer charities to speak as #OneCancerVoice. Together, we are calling on the government to deliver a fully-funded National Cancer Plan for England. In order to make real change happen for people living with cancer, the Plan must meet six essential tests.

A huge thank you to Laurie Burgess Hutcheson and @lobularbca.bsky.social for sponsoring Claire’s place.

One of our goals is to support people to become their own best advocate & get involved as patient advocates in research & campaigning. The learning that Claire will be bringing back will strengthen our current strategy & collaboration with researchers, clinicians & other breast cancer charities.

“I've already learnt so much about the basic biology of breast cancer and know I'm going to come back with a much clearer strategy, evidence base and knowledge.
I'm aiming to think better, challenge bolder, and be a transformative advocate for research and policy change in breast cancer.”

This month, our CEO, Claire Turner, was in San Diego attending the @nbccstopbc.bsky.social's Project Lead - the world leading 6-day patient advocacy science training programme.

Due to its unique growth pattern, Lobular Breast Cancer rarely forms a lump, making it hard to detect on scans.

Remember - you know your body best, so always be aware of any changes or differences that you see and feel.

The signs & symptoms of Lobular: lobularbreastcancer.org.uk/signs-and-sy...

Hi there, apologies but the survey has now closed.

Just a reminder that the deadline to apply to become a LBCUK Trustee is Wednesday 11 June.

The survey will take about 15 – 20 minutes to complete and the deadline is 30 June 2025. Please only take part if you're a woman diagnosed with Lobular Breast Cancer.

iahs.qualtrics.com/jfe/form/SV_...

We need to be really clear that it’s of benefit for the patient and of real use. This study is not simply academic research. We will be using the findings to improve the support we provide at LBCUK for patients online. And we'll share the findings afterwards.

At LBCUK, we are receiving requests to develop more opportunities to gain support and to meet up in online settings. To meet this need, we want to ensure that we are providing services that will be of most benefit to you and what you want.

Are you a woman with Lobular Breast Cancer? Got 15 -20 mins to spare?

In partnership with University of Aberdeen, we're conducting research to understand the emotional & informational needs of women with Lobular & how these needs can be supported through online resources.

This #VolunteersWeek we’d like to say a huge ‘Thank You’ to all our amazing Trustees. We couldn’t do what we do without you 🧡

And we’re recruiting for new Trustees to join our small but mighty charity! Could this be you? ⬇️

Thank you Ellie for a great article and for featuring us!

We're recruiting for Trustees who can help us to continue improving our work, challenging how we do things, and who want to make positive change in the lives of everyone affected by Lobular. Read more & download our Trustee Recruitment pack: lobularbreastcancer.org.uk/could-you-be...

LBCUK welcomes Claire Turner as Interim CEO - Lobular Breast Cancer UK We are delighted to announce Claire Turner as part time Interim CEO at Lobular Breast Cancer UK.

Read more about Claire's experience and her appointment on our website: lobularbreastcancer.org.uk/lbcuk-welcom...

Due to the growth of LBCUK’s activities and our expanding role in advocacy and research across the UK and internationally, we’re delighted to announce that Claire Turner has been appointed as Interim part time Chief Executive for the charity.

Sankari also sits on our Scientific & Medical Advisory Group, providing us with advice, guidance, information and support. Thank you Sankari for all you're doing to for everyone affected by Lobular 🧡

She is currently interested in developing Lobular specific gene biomarkers and targeted therapies for patients who lose important chromatin-associated proteins.

For the past 14 years, Sankari has worked on hormonal positive breast cancers in the context of ductal cancers and has now developed her group towards exploring the non-genetic mechanisms of cancer progression in Lobular cancers.

A headshot of Sankari. The text top left reads Meet the research scientist. The bottom text reads Dr Sankari Nagarajan, Breast Cancer Research Scientist & Lecturer in Chromatin Biology

Meet Sankari Nagarajan, a Breast Cancer Research Scientist at Cancer Research UK Cambridge Institute, Deputy Director at the @mcr-breastcentre.bsky.social and lecturer in Chromatin Biology.

YouTube video by Lobular Breast Cancer UK Jane Hill in conversation with Oncologist Elinor Sawyer

What are the challenges in diagnosing Lobular and what new methods of testing are available?
BBC News presenter Jane Hill interviews Professor Elinor Sawyer to find out. Watch the interview on our YouTube channel. www.youtube.com/watch?v=H6D6...

This research has been primarily driven by researchers @icr.ac.uk and we thank everyone involved.

Whilst it is fantastic news that NICE has recommended this drug for England and Wales, we encourage Northern Ireland and Scotland to approve capivasertib with fulvestrant too.

The drug blocks the effects of ATK, a protein molecule that drives cancer cells to multiply. This should help to slow or even stop the spread of the disease, but will not cure metastatic disease.

The drug will be given with fulvestrant, a hormone therapy for the treatment of metastatic disease, to patients who also have one or more abnormal "PIK3CA", "AKT"1 or "PTEN" genes.