Sarcoma Awareness Month aims to raise awareness of forgotten cancer that typically affects the young

Posted: 14/07/2021

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July is Sarcoma Awareness Month during which Sarcoma UK, the bone and soft tissue cancer charity, aims to raise awareness of sarcoma cancer, often referred to as the “forgotten cancer”.

Sarcomas are rare cancers of connective tissues that develop within the muscle, bone, nerve, cartilage, tendon, blood vessels, and fatty and fibrous tissues. The three main types are soft tissue sarcoma, bone sarcoma and gastrointestinal sarcoma (GIST), although there are approximately 100 sub-groups.

As tissues are found everywhere on the body, sarcomas can develop anywhere. Sarcoma cancers represent approximately 1% of all cancer diagnoses in the UK but three out of four people do not know what sarcoma is and the symptoms can often be mistaken for something else.

Key facts

Although sarcoma affects fewer than 500 people in the UK each year, it is the most common form of cancer in children and young adults. It accounts for 15% of all cancers for children up to 14 and 11% of teenage and young adult cancers (15-24 years). Sixteen per cent of patients with bone or soft tissues sarcomas are under the age of 30 and 37% are under the age of 50.

Symptoms

Although not every patient has obvious symptoms, patients with soft tissue sarcomas usually develop a lump in their leg, arm or torso. However, a patient may not have any obvious lumps or may have a lump elsewhere on their body that has not gone down over time.

Diagnosis

Early diagnosis is essential as early treatment is required.

The standard procedure for this is a clinical examination followed by a scan (ultrasound, x-ray, CT, EUS, PET or MRI depending on the location) and a biopsy of the lump.

Following a biopsy, if a patient is found to have sarcoma, a staging test for the cancer should be completed and an urgent care plan put in place for the treatment. If sarcoma is diagnosed, a patient should be referred urgently to a specialist sarcoma team as early as possible.

Often diagnosis can be difficult and this can lead to a delay in diagnosis if clinicians fail to recognise the symptoms correctly from the initial consultation.

Treatment

All treatment is dependent on the stage of the disease but most sarcomas require surgery to remove the tumour. This is often in addition to radiotherapy and/or chemotherapy.

• Radiotherapy – this is often performed before surgery to shrink the size of the tumour. It may also be used after surgery to kill any cancer cells that may have been missed.
• Chemotherapy – this may be used alongside radiotherapy before or after surgery to shrink the tumour and kill any leftover cancer cells. If the cancer has spread to other parts of the body, chemotherapy is used to shrink the tumours and help reduce the pain and discomfort from the tumours. However, chemotherapy is unlikely to eradicate the disease.

Post-treatment

Following treatment, patients can fully recover and enter into remission of sarcoma. As part of the ongoing care, any patient who has recovered or been treated for sarcoma should receive follow up appointments with a sarcoma nurse for several years. They should be examined regularly for returning sarcoma and have regular x-rays looking for secondary cancer in the lungs and main organs.

The Penningtons Manches Cooper clinical negligence team represents clients who have received a misdiagnosis or delayed diagnosis of sarcoma. Sadly, many cases that we are instructed on are made on behalf of a person’s estate as the cancer has been diagnosed too late and the cancer has spread.

If you or someone you know could have sarcoma, please encourage them to seek urgent medical attention and, if you are concerned about a delay in diagnosing sarcoma or the treatment received as part of your diagnosis, please contact us to speak with one of our specialist oncology lawyers.

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