Leiomyosarcoma - LMS Research UK

18/06/2026

Meet our Trustee...

Today we’re introducing Colin Grandison, Trustee at Leiomyosarcoma Research UK.

Colin spent 44 years working in banking, including the last decade of his career as an auditor for Citibank in Canary Wharf before retiring in 2019.

In early 2022, Colin was diagnosed with Leiomyosarcoma in his upper right arm. Following surgery to remove the tumour later that year, he now undergoes regular CT scan surveillance at The Royal Marsden NHS in London.

Colin brings both professional expertise and lived experience to the charity, helping support the growth and development of Leiomyosarcoma Research UK as it continues working to improve awareness and research into this rare cancer.

Like all of our trustees and volunteers, Colin understands first-hand the uncertainty and challenges that can come with an LMS diagnosis and the importance of ensuring patients feel informed, represented and supported.

Thank you, Colin, for everything you are doing for the LMS community.

15/06/2026

For many rare cancers, progress can feel painfully slow.

Leiomyosarcoma is rare, which means research opportunities, treatment developments and clinical understanding have historically been more limited than for more common cancers.

That is why research sits at the heart of what we do at Leiomyosarcoma Research UK.

💜 Research creates understanding.
💜 Research improves treatment pathways.
💜 Research gives patients and families hope for better outcomes in the future.

Although we are still a very young charity, we have already brought together a network of sarcoma professionals to help stimulate research projects and we have pledged funding towards our first projects.

Every breakthrough starts somewhere.

By supporting research into LMS, we are helping push forward knowledge, collaboration and the search for better treatments for people affected by this rare cancer.

Together, progress is possible.

13/06/2026

An interesting study on Uterine LMS and the recurrence.

Aggressive Tumor, Tough ChoicesLeiomyosarcoma (LMS) of the uterus is a rare but notoriously aggressive cancer, often returning even after surgery and proving stubborn against chemotherapy. For...

11/06/2026

Meet our Chair of Trustees...

Today we’re introducing Maisie England, Chair of Trustees at Leiomyosarcoma Research UK.

Maisie brings significant professional experience in connecting researchers together on large international research programmes - experience she now channels into helping drive progress for LMS research in the UK.

Maisie was diagnosed with Leiomyosarcoma in her bowel in 2023 and found the limited treatment and surveillance options deeply disappointing.

Rather than accepting the lack of progress around LMS, Maisie became determined to help create change.

She believes research is the key to improving outcomes for people diagnosed with LMS and has played a leading role in helping establish Leiomyosarcoma Research UK from the very beginning.

As a patient-led charity, lived experience sits at the centre of everything we do and Maisie’s determination continues to help shape the charity’s vision for the future.

Thank you, Maisie, for everything you are doing for the LMS community.

10/06/2026

So many charities and hospital trusts are working to develop the treatment they offer in order to improve results and the patient journey.

Great news from The Royal Marsden Cancer Charity below 👇 We know many of our supporters are patients at the amazing The Royal Marsden NHS

09/06/2026

One of the hardest things about Leiomyosarcoma is how unknown it still is.

Many patients and families say they had never heard of LMS before diagnosis. Some faced long periods of uncertainty, repeated appointments or symptoms being linked to more common conditions before answers were finally found.

Because LMS is rare, awareness matters enormously.

💜 Earlier conversations.
💜 Earlier investigations.
💜 Earlier referrals.
💜 Earlier diagnosis.

Those things can make a real difference.

At Leiomyosarcoma Research UK, we want more people to feel confident asking questions when something does not feel right.

We also want healthcare professionals, researchers and organisations to keep LMS on the radar and continue pushing forward understanding of this rare cancer.

Every conversation helps increase awareness.

Every shared story helps somebody feel less alone.

And every step forward in research helps create hope for the future.

07/06/2026

Leiomyosarcoma, often shortened to LMS, is a rare type of soft tissue sarcoma.

It develops in smooth muscle tissue - the muscles we do not consciously control - which means it can occur in many different parts of the body including the uterus, abdomen, bowel, blood vessels and other soft tissues.

Because LMS is rare, many people have never heard of it before diagnosis. Awareness can also be limited outside specialist sarcoma teams, which can sometimes lead to delays in diagnosis and treatment.

Every person’s experience of LMS is different and treatment pathways can vary depending on where the cancer develops and whether it has spread.

At Leiomyosarcoma Research UK, we are working to improve awareness, stimulate research and help ensure people affected by LMS can access the information and support they need.

Rare should never mean overlooked.

Learn more:
https://lmsruk.org/

06/06/2026

If you follow our page here at Leiomyosarcoma Research UK, it is highly likely that you have been diagnosed with the rare cancer or you care for someone who has.

Our friends at Cancer52 need a favour from you and we'd love for you to help. Please could you to take five and complete their anonymous patient/carer survey 👇🏼

This is a really important piece of research and will give a valuable insight into real-life experiences, challenges and priorities.

You response will help Cancer52 strengthen the voice of people affected by rare and less common cancers.

Please take the survey 👇🏼

https://www.surveymonkey.com/r/c52patientsurvey

05/06/2026

Leiomyosarcoma Research UK was created because people living with LMS saw a gap that urgently needed filling.

In early 2024, three Leiomyosarcoma patients came together after recognising there was no UK charity dedicated solely to the needs of people affected by LMS.

Although their experiences were very different, they all shared the same belief: people affected by Leiomyosarcoma deserve better awareness, more research, improved treatment options and stronger support.

The charity officially became a registered charity in October 2024 and since then has grown entirely through the work of volunteers and supporters.

Today, LMS Research UK is helping connect patients, families, researchers and healthcare professionals to help improve understanding and stimulate research into this rare cancer.

Everything we do is driven by one shared goal:
To improve outcomes for people affected by Leiomyosarcoma in the UK.

Our vision:
A world where people affected by Leiomyosarcoma in the UK can access the information, treatment, care and support they need.

Our mission:
To advance research into Leiomyosarcoma and improve patient pathways whilst supporting and informing patients and families affected by this rare cancer.

Learn more 👇🏼
https://lmsruk.org/

03/06/2026

Why did we choose the purple flower in our logo?

Because its story reflects the reality of living with Leiomyosarcoma.

The flower is called the purple saxifrage. It grows in the Arctic, one of the harshest environments on earth. While everything around it is still frozen, this small flower pushes through cracked ice and blooms - often becoming one of the very first signs of spring.

That felt deeply meaningful to us.

Leiomyosarcoma is a rare cancer. Rare can mean fewer treatment options, limited research, delayed diagnosis and a long search for information and support. Many people affected by LMS describe feeling isolated, as though progress moves painfully slowly.

But like the purple saxifrage, breakthroughs can still happen in the harshest conditions.

Our logo represents resilience, determination and hope for progress in LMS research, awareness and treatment.

It represents every patient, family member, volunteer, researcher and healthcare professional helping push forward change for this rare cancer.

We are incredibly grateful to Mike Smith, whose creativity helped shape the logo concept, and to graphic designer Adam Cardall, who brought it to life through their donated time and expertise.

This flower is now part of our identity - and a symbol of what we are fighting for together.