Too often, symptoms of soft tissue sarcoma in children are not being investigated quickly enough, researchers and campaigners have warned. 

Children with soft tissue sarcoma can face years of diagnostic delays, charities have warned, with new guidance published this month which aims to help doctors spot the cancer sooner.

Around one in ten children with soft tissue sarcoma wait more than six months for a diagnosis, compared with one in 33 children with leukaemia, while researchers have found in one instance a child waited almost four years for confirmation. 

Soft tissue sarcoma can occur anywhere in the body, and its symptoms can resemble less serious conditions, such as infections, bruises or benign fatty lumps, making it difficult to recognise.

The new guidance, launched by CCLG: The Children & Young People’s Cancer Association through its Child Cancer Smart campaign, sets out how to assess for the condition. 

Sharna Shanmugavadivel, paediatric emergency medicine specialist and campaign lead, said one of the major pitfalls in diagnosing the disease is “recognising when something doesn’t fit the expected picture.” 

“We are seeing that a lump may be attributed to an injury despite no clear history of trauma, or continue to be diagnosed as an infection when it has not responded to antibiotics,” Shanmugavadivel said. 

Recognising that the lump has not improved or is getting worse and then investigating further is crucial, they added, as delays can have “serious consequences.” 

Longer delays mean the patient often requires more intensive treatment and, in some cases, surgery or even limb removal. 

The guidance aims to reduce avoidable delays and improve survival rates. It covers when clinicians should consider imaging, appropriate waiting times for ultrasound and MRI scans, and when to refer patients for further investigation.

The charity has also created lists for families to help them recognise symptoms such as unexplained lumps, swelling, pain and skin changes. Other symptoms can include a limp, restricted movement, unexplained weight loss, fever, bruising and bleeding.

Soft tissue sarcomas account for 7% of all childhood cancers, yet the diagnosis time is one of the longest.