Leiomyosarcoma (LMS) is a rare type of soft tissue sarcoma, which means diagnosing it isn’t always straightforward.
Many people are unfamiliar with Leiomyosarcoma until they are diagnosed themselves, and because it is rare, the symptoms can sometimes be mistaken for more common conditions.
If you’ve recently been diagnosed, you may be wondering how doctors reached that diagnosis and why you needed so many different tests.
There isn’t one single test
Diagnosing Leiomyosarcoma usually involves a combination of tests rather than one single investigation.
Your healthcare team will build up a picture using scans, medical history, physical examination and, most importantly, a biopsy.
These tests help doctors understand exactly what the tumour is, where it has developed and whether it has spread.
Recognising symptoms
The first step is often recognising that something isn’t quite right.
Symptoms vary depending on where the tumour develops, but people may experience things such as:
- A lump that continues to grow
- Persistent pain or discomfort
- Abdominal swelling or bloating
- Changes related to the uterus, such as abnormal bleeding
- Symptoms linked to the specific part of the body where the tumour is developing
Many of these symptoms are far more commonly caused by conditions other than Leiomyosarcoma, which is one reason diagnosis can sometimes take time.
Imaging scans
If your doctor suspects further investigation is needed, you may be referred for imaging scans.
These might include:
- Ultrasound
- CT scan
- MRI scan
- PET scan, in some circumstances
Scans help show the size and location of the tumour and whether there are any signs that it has spread elsewhere in the body.
A biopsy provides the diagnosis
The only way to confirm Leiomyosarcoma is by examining a sample of the tumour under a microscope.
This is called a biopsy.
A specialist doctor, known as a pathologist, examines the tissue and carries out detailed tests to identify exactly what type of tumour it is.
Although waiting for biopsy results can feel incredibly difficult, this step is essential because treatment decisions depend on an accurate diagnosis.
Why specialist sarcoma teams matter
Because Leiomyosarcoma is rare, many patients are referred to a specialist sarcoma centre.
These centres bring together healthcare professionals with expertise in diagnosing and treating sarcomas.
Your biopsy results, scans and other information are often reviewed by a multidisciplinary team (MDT), where specialists work together to recommend the most appropriate treatment for your individual circumstances.
Having access to specialist expertise is an important part of ensuring the diagnosis is as accurate as possible.
Will I need more tests?
Even after a diagnosis has been confirmed, your healthcare team may recommend additional investigations.
These tests help them understand more about the tumour before discussing treatment options.
Although this can feel frustrating, every piece of information helps your team develop the most appropriate treatment plan for you.
Waiting can be one of the hardest parts
Many people say the waiting between tests and results is one of the most emotionally challenging parts of diagnosis.
If you’re experiencing this, you’re not alone.
It can help to write down any questions you have for your next appointment and speak openly with your healthcare team if you’re unsure about what is happening or why another test has been recommended.
You don’t have to understand everything immediately
Being diagnosed with a rare cancer means hearing lots of unfamiliar words and medical terms in a short space of time.
It’s perfectly okay to ask your consultant to explain things again or to ask for information to be written down.
Understanding your diagnosis is a process, not something that happens after one appointment.
Related articles
- I’ve Just Been Diagnosed with Leiomyosarcoma. What Happens Next?
- What Questions Should I Ask My Consultant After a Leiomyosarcoma Diagnosis?
- What Is a Specialist Sarcoma Centre?
- Understanding Your MDT Meeting
Please remember: Every person’s symptoms, investigations and diagnosis are different. This information is intended as a general guide and should not replace advice from your consultant or specialist healthcare team.