iiinova — where your digital self keeps evolving

Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/04/2026

Fantastic to see another Lobular Breast Cancer research programme from Dr Megan Cruse who also works closely with patient advocates and is a key part of the international Lobular research community.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 27/04/2026

Next year our Interim CEO, Claire Turner, is lacing up her trainers to take on the London Marathon to support our work and we have two Silver Bond places for you to join her!

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 27/04/2026

Huge congrats to Ben, our first ever #LondonMarathon runner! Yesterday Ben smashed his target time by 9 minutes. He was aiming for 3 and a half hours and completed the marathon in 3 hours and 21 mins - what an epic achievement. Ben has also smashed his fundraising target of £5,000 🙌 Thank you Ben!

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 09/04/2026

Thank you for meeting with us, Andy and for sharing our information leaflet.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 22/09/2025

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...

lobularbreastcancer.org.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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 28/08/2025

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

lobularbreastcancer.org.uk

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 28/08/2025

- 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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 28/08/2025

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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 28/08/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 11/08/2025

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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 11/08/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 11/08/2025

“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.”

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 11/08/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/07/2025

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...

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 23/06/2025

Hi there, apologies but the survey has now closed.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 08/06/2025

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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 05/06/2025

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_...

iahs.qualtrics.com

Qualtrics Survey | Qualtrics Experience Management

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 05/06/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 05/06/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 05/06/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 02/06/2025

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? ⬇️

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/05/2025

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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 28/05/2025

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...

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 06/05/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/04/2025

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 🧡

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/04/2025

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

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/04/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 29/04/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 17/04/2025

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...

youtube.com

Jane Hill in conversation with Oncologist Elinor Sawyer

YouTube video by Lobular Breast Cancer UK

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/04/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/04/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/04/2025

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.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/04/2025

Capivasertib will benefit an estimated 1,100 women a year in England and Wales with hormone receptor positive (HR) and human epidermal growth factor receptor 2 negative (HER-2) breast cancer - many who have had a Lobular diagnosis.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/04/2025

We welcome the news that capivasertib with fulvestrant will be offered on the NHS to women with metastatic breast cancer in England and Wales.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 09/04/2025

The extracellular matrix is a a network of proteins and other molecules that surrounds and supports cells and tissues. Renée aims to uncover molecular mechanisms driving ILC and identify markers in the blood, body fluids or tissues that show how well the body responds to different treatment. 2/2

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 09/04/2025

Meet Renée, a Postdoctoral Research Scientist at The Institute of Cancer Research in London. Renée's work explores the therapeutic potential of targeting extracellular matrix (ECM) remodelling in Invasive Lobular Carcinoma (ILC). 1/2 #LobularBreastCancer #WomenInScience #CancerResearch

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 04/04/2025

Ollie is running the #BrightonMarathon on Sunday for LBCUK! It's his first ever marathon and he's running in support of his mum, Angela 💜 Drop a 🙌 to wish him luck! If you'd like to support Ollie, you can donate to his JustGiving page here: www.justgiving.com/page/oliver-...

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 03/04/2025

The Government is writing a new national cancer plan. Share your opinions & help inform them of the wider needs of Lobular patients – how it’s a distinct disease that needs better understanding, more research and more effective treatment guidelines. consultations.dhsc.gov.uk/shaping-the-...

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 24/03/2025

Please only fill out the survey if you have metastatic Lobular Breast Cancer. If you have had multiple misdiagnoses, you can complete this survey more than once — once for each separate misdiagnosis. The deadline is 31 March. Take part in the survey here: pitt.co1.qualtrics.com/jfe/form/SV_...

pitt.co1.qualtrics.com

Qualtrics Survey | Qualtrics Experience Management

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 24/03/2025

Developed by patients, physicians, & researchers, their survey aims to gather insights into patients’ diagnostic journeys, including experiences with misdiagnosis and delays. The survey consists of 40 questions & will help guide future research. Results will be summarised in a manuscript.

pitt.co1.qualtrics.com

Qualtrics Survey | Qualtrics Experience Management

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 24/03/2025

Have you had a Metastatic Lobular diagnosis? Could you help Lobular Breast Cancer researchers at the Lee-Oesterreich Lab at UPMC Hillman Cancer Center and the University of Pittsburgh School of Medicine in the US with their research?

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 21/03/2025

We look forward to building greater collaborations and partnerships between Barts Health and LBCUK. Big thank you to Dr Vasileios Angelis, Medical Oncologist in Breast Cancer at Barts for inviting us to participate in their day.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 21/03/2025

There were also really interesting presentations on the importance of sleep for patients, the potential of AI in imaging, advancing care for brain metastases, controversies in surgical applications and a presentation by Future Dreams Breast Cancer Charity on their patient support services.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 21/03/2025

We talked about how we can work together with health professionals to improve conversations with our medical team, increasing understanding about Lobular and driving Lobular research and data capture to enhance clinical patient outcomes.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 21/03/2025

This time last week we were with the clinicians at St Bartholemew’s Hospital to participate in their annual Barts Health NHS Trust Breast Cancer meeting. Our Chair, Claire Turner, and Trustee, Emma Amos, did a presentation about the impact of a Lobular diagnosis on patients.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 20/03/2025

Do you know what one of the simplest things you can do to raise awareness of Lobular Breast Cancer is? Call it by its name. Most people have never heard of Lobular Breast Cancer so the more we name it and talk about it, the more awareness we will raise.

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Lobular Breast Cancer UK @lobularbcuk.bsky.social · 15/03/2025

So fabulous to see the archives being used for learning with current students.

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