STEP 2: Presentation, initial investigations and referral

This step outlines the process for establishing a diagnosis and appropriate referral. The types of investigation undertaken by the general or primary practitioner depend on many factors, including access to diagnostic tests and medical specialists and patient preferences.

The following signs and symptoms may indicate sarcoma. Symptoms of bone sarcoma include:

  • persistent non-mechanical pain in any bone lasting more than a few weeks
  • referred pain
  • pain that is unremitting and unresponsive to analgesics
  • nocturnal bone pain
  • a mass
  • swelling
  • a limp
  • limited mobility or loss of limb function
  • fractures with minimal trauma.

Symptoms of soft tissue sarcoma include:

  • persistent pain
  • any deep mass
  • any superficial mass with a diameter exceeding 5 cm
  • a small but growing mass
  • a rapidly growing change in a mass (over months)
  • a mass with atypical physical characteristics – for example, hardness, firmness, irregularity and/or atypical location
  • a mass where there is no associated history of trauma (differential diagnosis, for example, haematoma).

Examinations/investigations should include:

  • medical history and baseline blood tests
  • physical examination including assessing the physical characteristics of the mass and assessing the regional lymph nodes
  • plain x-ray (if there is bone pain)
  • specialist referral for a soft tissue lump (ultrasound is often of limited use and may be misleading).

The decision to perform a biopsy should be determined by a specialist in musculoskeletal tumours who is part of a specialist sarcoma multidisciplinary team.

All patients with suspected sarcoma should be referred to a specialist sarcoma multidisciplinary team before biopsy (Cancer Council Australia Sarcoma Guidelines Working Party 2014, ESMO 2014a, ESMO 2014b).

Patients aged under than 16 years should attend a paediatric specialist treatment centre. Patients aged 16–18 years should attend either a paediatric or adult specialist centre with access to a multidisciplinary team and supportive services appropriate to the AYA age group.

Referral for suspected sarcoma should incorporate appropriate documentation sent with the patient including:

  • a letter that includes important psychosocial and medical history, family history, current symptoms, medications and allergies
  • results of current clinical investigations (imaging reports)
  • results of all prior relevant investigations
  • any prior imaging, particularly a hard copy or CD where online access is not available (lack of a hard copy should not delay referral)
  • notification if an interpreter service is required.

Timeframe for referral to a specialist

Timeframes for referral to a specialist should be informed by evidence-based guidelines (where they exist) while recognising that shorter timelines for appropriate consultations and treatment can reduce patient distress.

The following recommended timeframes are based on expert advice from the Sarcoma Working Group1:

  • A suspected sarcoma should be referred to a specialist within two weeks.
  • The first specialist assessment should occur within four weeks of referral.

The supportive and liaison role of the GP and practice team in this process is critical.

An individualised clinical assessment is required to meet the identified needs of an individual, their carer and family; referral should be as required.

In addition to common issues identified in the Appendix, specific needs that may arise at this time include:

  • treatment for physical symptoms such as pain, fatigue, musculoskeletal dysfunction, reduced oral intake and issues with activities of daily living
  • help with the emotional distress of dealing with a potential cancer diagnosis, anxiety/depression, interpersonal problems, stress and adjustment difficulties
  • guidance for financial, education and/or employment issues (such as loss of income and having to deal with travel, and accommodation requirements for rural patients and caring arrangements for other family members)
  • appropriate information for people from culturally and linguistically diverse backgrounds
  • allied health evaluations as appropriate.

Effective communication is essential at every step of the care pathway. Effective communication with the patient and carer is particularly important given the prevalence of low health literacy in Australia (estimated at 60 per cent of Australian adults) (ACSQHC 2013).

The general or primary practitioner should:

  • provide the patient with information that clearly describes who they are being referred to, the reason for referral and the expected timeframe for appointments
  • support the patient while waiting for the specialist appointment.