Practice and Results in the Investigation and Management of Uterine Sarcomas (PRIMUS) Study

Dr Alex Lee (The Christie NHS Foundation, Manchester)

Uterine sarcomas are rare but aggressive cancers of the womb, with around 250 women diagnosed each year in the UK. One particularly serious type is uterine leiomyosarcoma (LMS). Although uncommon, these cancers can grow and spread quickly, making early and accurate diagnosis vital for improving survival and long-term outcomes.

Detecting uterine sarcoma early is extremely challenging. Symptoms such as heavy or irregular periods, pelvic pain, or abdominal swelling are very common and are usually caused by fibroids, which are non-cancerous growths affecting many women. Because fibroids are far more likely, sarcoma is often not suspected, leading to delays in diagnosis and treatment.

Current medical tests cannot reliably distinguish benign fibroids from dangerous cancers. Ultrasound and CT scans are usually unable to tell the difference, while MRI scans and biopsies can still be unclear or misleading. This leaves both patients and clinicians making difficult decisions without the certainty they need.

As a result, some women undergo surgery that unintentionally delays appropriate cancer treatment or worsens outcomes, while others may have major surgery, including removal of the womb and loss of fertility, only later to discover that their tumour was not cancerous. Care pathways also vary widely across the UK, meaning that where a woman lives can influence the care she receives.

To address these challenges, we are supporting Dr Alex Lee’s two-year research programme (Early Career Fellowship), which focuses on improving how uterine sarcoma, particularly LMS, is identified and managed. The programme will begin by mapping how women with suspected uterine sarcoma are currently diagnosed and treated across the UK, highlighting variation, gaps in care, and opportunities for improvement.

The research also includes a pilot study in Greater Manchester, recruiting women with suspicious fibroids or confirmed uterine sarcoma. Participants will receive advanced MRI scans analysed using artificial intelligence, alongside blood tests known as “liquid biopsies” that look for traces of cancer DNA in the bloodstream. Tumour samples will also be collected to support future molecular research.

Learning from this work will be shared nationally with gynaecological cancer specialists, including close collaboration with Professor Esther Moss at Leicester University Hospital, helping spread best practice and accelerate progress across multiple research projects. Women involved in the study will be followed over time to track outcomes such as recurrence and survival, with patients and families involved throughout. Together, this work aims to improve early detection, reduce unnecessary surgery, and deliver better, fairer care for every woman, wherever she lives.