How Rare Is Leiomyosarcoma?

Find out how rare Leiomyosarcoma is, what "rare cancer" means and why specialist care and research are so important for people diagnosed with LMS.

One of the first things many people hear after being diagnosed with Leiomyosarcoma (LMS) is that it is a rare cancer.

That can feel unsettling.

You may wonder what “rare” actually means, whether doctors have experience treating it or if enough research is being carried out.

These are completely understandable questions, and while Leiomyosarcoma is uncommon, there are specialist teams, researchers and charities dedicated to improving outcomes for people affected by it.

What does “rare cancer” mean?

A rare cancer is one that affects a relatively small number of people compared with more common cancers such as breast, lung or bowel cancer.

Leiomyosarcoma is one of more than 100 different types of sarcoma, a group of cancers that develop in bone or soft tissue.

Because it is uncommon, many people have never heard of Leiomyosarcoma until they or someone they love receives a diagnosis.

How many people are diagnosed each year?

Leiomyosarcoma is a rare disease, accounting for only a small proportion of all cancer diagnoses.

Although exact numbers vary from year to year, it is estimated that around 500–600 people are diagnosed with Leiomyosarcoma in the UK each year, making it one of the rarer forms of cancer.

While that means relatively few people receive this diagnosis annually, every one of those people deserves access to expert care, research and support.

Does rare mean there isn’t specialist expertise?

Not at all.

Because Leiomyosarcoma is rare, patients are often referred to specialist sarcoma centres where healthcare professionals have experience diagnosing and treating sarcomas.

These centres bring together surgeons, oncologists, radiologists, pathologists and other specialists who work together to recommend the most appropriate treatment for each patient.

Being referred to a specialist centre helps ensure your care is guided by professionals with expertise in rare cancers.

Why is research so important?

Rarity brings challenges.

Compared with more common cancers, there are fewer patients available to take part in research studies and clinical trials. This can make it more difficult to answer important questions about diagnosis, treatment and long-term outcomes.

That is why charities such as Leiomyosarcoma Research UK are so important.

By raising awareness, supporting research and bringing together patients, clinicians and researchers, we can help improve understanding of Leiomyosarcoma and work towards better treatment options in the future.

You’re not as alone as you may feel

One of the most difficult things about a rare cancer diagnosis can be the feeling that nobody else understands.

Many people tell us they had never met another person with Leiomyosarcoma and struggled to find reliable information in the early days after diagnosis.

While Leiomyosarcoma is rare, there is a growing community of patients, families, healthcare professionals, researchers and volunteers working together to improve awareness and support.

You are part of that community now.

Looking to the future

Awareness of rare cancers continues to grow, and research into Leiomyosarcoma is advancing all the time.

Every research project, every patient who shares their story, every healthcare professional specialising in sarcoma and every supporter helping to raise awareness contributes to improving the future for people diagnosed with LMS.

Rare does not mean forgotten.

At Leiomyosarcoma Research UK, we are committed to improving awareness, advancing research and supporting everyone affected by this rare cancer.

Please remember: This information is intended as a general guide. If you have questions about your own diagnosis or treatment, your consultant or specialist sarcoma team is the best person to advise you.