July marks Sarcoma Awareness month. If you don't know what sarcoma is, you are not alone. A recent survey by Sarcoma UK revealed that 75% of the public do not know what sarcoma is, with 16.8% incorrectly believing that it is simply a benign lump. The lack of awareness around sarcoma means that it often goes misdiagnosed, diagnosed late or treated incorrectly leading to tumour growth and negatively impacting survivability.

In this blog, Imogen Westwood, a paralegal in our clinical negligence team, discusses sarcoma and why awareness of sarcoma is important.

What is sarcoma?

Sarcoma is a type of tumour that develops in the bone or soft tissues and as a result it can arise almost anywhere in the body. This type of cancer is rare with sarcomas accounting for only 1.3% of cancers in the UK. However, many of the individuals who make up this statistic are children and teenagers, with one of every seven people diagnosed being a young person.

Symptoms of primary bone cancer may include bone pain, which is often worse at night, problems with mobility such as a limp or stiff limbs, and tenderness over joints. Soft tissue sarcomas may present as a painless lump, a noticeable and painful lump, or could even be entirely unnoticeable until it causes secondary symptoms like numbness or swelling. Other symptoms include lethargy, bruising easily and a feeling of pins and needles in the affected area.

Unfortunately, as Sarcoma UK has found, there is a lack of awareness of sarcoma so symptoms can often be overlooked, especially in young people. Even when a patient presents to their GP with a clear lump they can often be misdiagnosed; as many as 40% of patients do not receive an initial accurate diagnosis of their sarcoma. Due to its rarity, it is often not something which is considered as part of an initial differential diagnosis by a GP or first-line treatment clinicians. As a result, sarcomas can be left undiagnosed for long periods of time which directly impacts survivability and limits treatment options.

The “Whoops Procedure”

Sarcomas can often be mistaken for bone cysts or benign bone tumours, the treatment for which is surgical excision. After the excision when it is revealed that the tissue was cancerous, this is known as a “whoops procedure”. This early misdiagnosis can have a huge impact on the trajectory of a sarcoma patient’s journey.

Why does this matter?

Outcome for sarcoma can be poor, even when it is accurately identified. When there has been a Whoops Procedure this can leave patients vulnerable to relapse or recurrence as the initial excision was not conducted with cancer-prevention in mind. If there was not total resection of the tumour this can lead to residual disease that increases the risk of local recurrence and compromises survival. This can lead to the need for a further, more extensive operation to re-excise the tumour and can also lead to the need for radiation treatment. As a result, Whoops Procedures can lead to less opportunities for limb salvage, lower rates of local control and increased amputation rates.

How can we prevent sarcoma misdiagnosis?

“Whoops Procedures” may occur because an assumption has been made on the nature of a lesion without adequate investigation. With greater general awareness diagnosis could be quicker, treatment could be more effective and more people could survive sarcoma.

Finding help for sarcoma

If you have been diagnosed with sarcoma, the treatment path may be daunting, but there are lots of organisations that offer information and support.

The Bone Cancer Research Trust and Sarcoma UK are two charities which are dedicated to supporting those with sarcoma. They fund research into the treatment of sarcoma and also have a wide range of resources to help guide patients through the physical, psychological and social impact of going through treatment.