STEP 2: Presentation, initial investigations and referral
This step outlines the process for the general practitioner to initiate the right investigations and refer to the appropriate specialist in a timely manner. The types of investigations the general practitioner undertakes will depend on many factors, including access to diagnostic tests, the availability of medical specialists and patient preferences.
The following symptoms are common:
- any abnormal lump or mass in any organ
- lymphadenopathy:
- persistent beyond two weeks
- associated with systemic symptoms (see next bullet point)
- that does not resolve despite appropriate treatment of infection
- associated with pain in the lymph nodes following alcohol consumption
- one or more of these symptoms even in the absence of lymphadenopathy:
- persistent unexplained fever
- drenching sweats
- unintentional weight loss
- persistent severe itch
- frequent infections.
Hodgkin lymphoma and DLBCL can present with many symptoms, and this possibility should be kept in mind during the evaluation of otherwise unexplained symptoms.
Any symptoms of acute organ compromise (compression, spinal cord, ureter, arteries, airways) require prompt attention.
The presence of multiple signs and symptoms, particularly in combination with other underlying risk factors, indicates an increased risk of Hodgkin lymphoma and DLBCL.
Presenting symptoms should be promptly and clinically triaged with a general practitioner.
Patients suspected to have lymphoma based on the clinical assessment during the initial general practitioner visit should be immediately referred to a specialist for diagnosis.
For patients where there is less of an immediate concern, or a lower index of suspicion, further examinations/investigations by the general practitioner should include (but is not limited to):
- blood tests to assess organ dysfunction, such as a full blood examination with film and sometimes flow cytometry, urea and electrolytes, calcium and urate, liver function and lactate dehydrogenase (LDH) tests, beta 2 microglobulin, erythrocyte sedimentation rate and C-reactive protein (blood tests indicating organ dysfunction require further examination)
- serology to exclude infectious diseases including Epstein-Barr virus, human immunodeficiency virus and others is often needed (note that laboratory tests can indicate Hodgkin lymphoma and DLBCL may be present, but normal results do not indicate lymphoma absence)
- imaging of the affected area using ultrasound, x-ray and computed tomography (CT) scans, as appropriate
- biopsy, as appropriate
- a fine-needle aspiration is rarely discriminatory in this setting; a core biopsy may be appropriate (note that a negative fine-needle aspiration and normal core biopsy in the presence of a highly suspicious clinical case cannot indicate lymphoma absence) (Karimi-Yazdi et al. 2014)
- a period of observation of up to four weeks for patients without significant or progressive symptoms.
For patients who do not need a prompt referral, all investigations should be completed, and a path of action decided, within four weeks of first presentation.
If the general practitioner suspects a cancer diagnosis or an aggressive lymphoma histological diagnosis has not been performed, they must refer the patient to an appropriate specialist who has access to multidisciplinary support to make the diagnosis.
If the general practitioner confirms a cancer diagnosis with initial tests, they must then refer the patient to a haematologist or medical oncologist with professional expertise in lymphoma management.
Patients should be enabled to make informed decisions about their choice of specialist and health service. General practitioners should make referrals in consultation with the patient after considering the clinical care needed, cost implications (see referral options and informed financial consent), waiting periods, location and facilities, including discussing the patient’s preference for health care through the public or the private system.
Referral for suspected or diagnosed Hodgkin lymphoma and DLBCL should include the following essential information to accurately triage and categorise the level of clinical urgency:
- important psychosocial history and relevant medical history
- family history, current symptoms, medications and allergies
- results of current clinical investigations (imaging and pathology reports)
- results of all prior relevant investigations
- notification if an interpreter service is required.
Many services will reject incomplete referrals, so it is important that referrals comply with all relevant health service criteria.
If access is via online referral, a lack of a hard copy should not delay referral.
The specialist should provide timely communication to the general practitioner about the consultation and should notify the general practitioner if the patient does not attend appointments.
Aboriginal and Torres Strait Islander patients will need a culturally appropriate referral. To view the optimal care pathway for Aboriginal and Torres Strait Islander people and the corresponding quick reference guide, visit the Cancer Australia website. Download the consumer resources – Checking for cancer and Cancer from the Cancer Australia website.
- If the presence of lymphoma is highly likely based on the initial consultation with the general practitioner, referral for urgent tissue diagnosis is needed, followed by urgent referral to a specialist centre for further assessment within 72 hours.
- For patients who underwent further investigations (if indicators of concern are absent), referral to a specialist should occur within four weeks.
- Patients under observation should be reviewed by their general practitioner within six weeks of initial presentation.
The patient’s general practitioner should consider an individualised supportive care assessment where appropriate to identify the needs of an individual, their carer and family. Refer to appropriate support services as required. See validated screening tools mentioned in Principle 4 ‘Supportive care’.
A number of specific needs may arise for patients at this time:
- assistance for dealing with the emotional distress and/or anger of dealing with a potential cancer diagnosis, anxiety/depression, interpersonal problems and adjustment difficulties
- management of physical symptoms such as pain, nausea and headache; corticosteroids should not be used without discussion with a specialist, prior to tissue diagnosis
- screening for significant unintentional weight loss (more than 5 per cent in six months) and consideration of need for nutritional assessment
- encouragement and support to maintain an active lifestyle (Cormie et al. 2018; Hayes et al. 2019).
For more information refer to the National Institute for Health and Care Excellence 2015 guidelines, Suspected cancer: recognition and referral.
For additional information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.
The general practitioner is responsible for:
- providing patients with information that clearly describes to whom they are being referred, the reason for referral and the expected timeframes for appointments
- requesting that patients notify them if the specialist has not been in contact within the expected timeframe
- considering referral options for patients living rurally or remotely
supporting the patient while waiting for the specialist appointment (Cancer Council nurses are available to act as a point of information and reassurance during the anxious period of awaiting further diagnostic information; patients can contact 13 11 20 nationally to speak to a cancer nurse).
Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.
