Sponsored by Sarcoma UKSarcoma UK

Improving diagnosis and prognosis for sarcoma cancer patients

GPs may only ever see one case of sarcoma in their whole career, making diagnosis a challenge. Charity Sarcoma UK explains the red flags, prevalence, prognosis and provides advice on referral.

An MRI showing a sarcoma of the knee (Photo: semnic/Getty Images)
An MRI showing a sarcoma of the knee (Photo: semnic/Getty Images)

Latest statistics show that only 5,300 people each year in the UK are diagnosed with sarcoma, a cancer of the bone and soft tissue. This is a tenth of those found with breast cancer.

As a relatively uncommon cancer, a GP might only ever see one case of sarcoma in their whole career, making diagnosis and referral to the correct patient pathway very challenging to a non-specialist. As with all cancers, the earlier a sarcoma is diagnosed, the better the chance of successful treatment.

Sarcoma UK

Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma. www.sarcoma.org.uk

This article is funded by Sarcoma UK for GP Connect

Red flag symptoms

One of the key symptoms for sarcoma is a visible lump or swelling, possibly painful, that is growing in size.

General practice is usually the first place where patients present with a visible lump that may be sarcoma (usually appearing on the leg, arm or trunk). GPs knowledge of the clinical presentations of sarcoma, combined with a prompt referral to a specialist sarcoma centre for diagnosis and treatment, can make a crucial difference to a patient’s long-term prognosis.

With more than 100 sub-types, it can develop in people of any age and in any part of their body. Symptoms can also be non- specific, which in turn can lead to patients presenting late.

Soft tissue sarcoma, which accounts for seven in ten cases of all sarcoma:

  • Develop in supporting or connective tissue such as the muscle, nerves, tendons, blood vessels, and fatty and fibrous tissue.
  • Occurs most commonly in the arms and legs
  • Can also occur on the trunk, female reproductive system or as a gastrointestinal stromal tumour (GIST) anywhere in the tract from the gullet to the anus.
  • Around 5% of cases occur in the head and neck.

Bone cancers are more common in children and young adults with about 670 cases a year. In these cases, a lump can appear on the bone, destroying it as the tumour grows, with the possibility of it spreading too.

Early diagnosis

If sarcoma is correctly diagnosed when the lump is less than 5cm, patients have a 20% higher chance of a positive outcome because it’s less complicated to extract and has a reduced impact on the surrounding area. However, Sarcoma UK figures show that:

  • The majority of people are diagnosed when their sarcoma is 10cm — about the size of a large tin of baked beans.
  • Soft tissue sarcoma patients wait an average 92 weeks — almost two years — between spotting symptoms and being referred for investigation.
  • 27% of patients who visited their GP were started on treatment for another condition or told that their symptoms were not serious.
  • As many as 40% of patients do not receive an initial accurate diagnosis.

Prevalence and prognosis

On average, 15 people in the UK are diagnosed with sarcoma every day.

Presently, survival rates for sarcoma are poor and not as high as many other cancers. Only 55% of sarcoma patients will survive for five or more years. Compare this to testicular cancer which has an estimated five-year survival rate of 98%.

Despite the relative rarity of sarcoma, it’s important that frontline health care professionals are aware of any growing lumps anywhere on the body which might require further investigation.

Guidance on referrals

First line referrals where possible from GPs should be to one of the 16 specialist sarcoma centres, staffed by sarcoma multi- disciplinary teams across the UK.

The implementation of NHS England’s Sarcoma Service Specification will help to standardise improved treatment and increase survival rates.

The loneliest cancer

Sarcoma is a cancer that few have heard of. However, its rarity should not hide the catastrophic effect it can have on those who have experienced sarcoma or their family and friends. Being little recognised and far from fully understood has led to a plethora of issues which seem unique to sarcoma.

Sarcoma UK, the national charity for bone and soft tissue cancer, has just launched a patient campaign including commissioning a new report to take an overview of the current landscape for sarcoma patients and their families.

The report The Loneliest Cancer finds that even those who are successfully treated can suffer life changing after-effects, due to the aggressive nature of surgery including amputation. Many are left facing physical or mental barriers to overcome each day which can be hugely isolating. To read the full report click here.

For specialist information and support, GPs can refer patients and their families to the Sarcoma UK Support line. Monday to Friday 10am–3pm. 0808 801 0401 or email supportline@sarcoma.org.uk.

Sarcoma Diagnostic Toolkit

Early diagnosis of sarcoma is key to improving survival outcomes. Sarcoma UK has recently updated its range of free GP sarcoma diagnostic toolkits, which contain simple yet effective tools outlining clinical presentations, investigations for adults and children, guidance on how to refer patients to their appropriate sarcoma specialist centre for diagnosis and treatment and further information (e.g. NICE guidelines).

The following toolkits are available:

  • Is it bone sarcoma? (England, Wales and Northern Ireland) and (Scotland)
  • Is it soft tissue sarcoma? (England, Wales and Northern Ireland) and (Scotland)

Download the toolkits at sarcoma.org.uk/health-professionals/gps or contact the charity for printed copies.

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