STEP 2: Presentation, initial investigations and referral

Most patients are asymptomatic when they are diagnosed because CLL is often found in routine blood tests.

When present, symptoms can include:

  • painless swelling of lymph nodes (often around the neck) that may fluctuate in size but don’t completely resolve (within 6 weeks)
  • unexplained weight loss of ≥10 per cent of body weight within the past 6 months
  • fever or severe night sweats without signs of infection (uncommon)
  • extreme fatigue frequent infections or first onset of herpes zoster reactivation.

Other signs may include enlarged lymph nodes, spleen or liver, with enlarged lymph nodes being the most common of these.

Additionally, if the following blood test abnormalities are found, CLL should be investigated as a possible underlying cause: reduced levels of normal immunoglobulins, autoimmune haemolytic anaemia, immune thrombocytopenia.

Initial investigations by the GP include:

  • history and physical exam including careful palpation of all lymph node areas, spleen and liver
  • full blood count and manual film examination
  • flow cytometry to confirm clonal nature of lymphocytes
  • urea, electrolytes, uric acid and creatinine
  • liver function tests
  • serum immunoglobulin levels and direct antiglobulin test (Coombs test).

Lymph node biopsy is generally not necessary to diagnose CLL, even if lymphadenopathy is present clinically or on imaging. Routine imaging is not recommended and should only be performed when there are concerns about local symptoms, compression or very bulky nodes to exclude a local complication such as hydronephrosis or vascular compression.

Referral options

At the referral stage, the patient’s GP or other referring doctor should advise the patient about their options for referral, waiting periods, expertise, potential out- of-pocket costs and the range of services available. This will enable patients to make an informed choice of specialist and health service.

Communication

The GP’s responsibilities include:

  • explaining to the patient and/or carer who they are being referred to and why
  • supporting the patient and/or carer while waiting for specialist appointments
  • informing the patient and/or carer that they can contact Cancer Council 13 11 20, Leukaemia Foundation 1800 620 420 and Lymphoma Australia 1800 953

Checklist

  • Significant lymphocytosis and/or a leukaemic cell population is identified
  • Signs and symptoms recorded
  • Patient notified of support services such as Cancer Council 13 11 20, Leukaemia Foundation 1800 620 420 and Lymphoma Australia 1800 953 081
  • Referral options discussed with the patient and/or carer including cost implications

Timeframe

The timeframe to begin investigations is rarely urgent. For patients with severe symptoms of fever, night sweats or weight loss, investigations should be started as soon as possible to exclude more aggressive disorders such as lymphoma.

Patients should generally be seen by a specialist within 2 weeks of GP referral. However, if severe thrombocytopenia, anaemia or bulky or locally compressive lymphadenopathy is present, refer within 72 hours.