Head and neck cancer

Go to Quick Reference Guide

Optimal care pathways map seven key steps in cancer care. Each of these steps outlines nationally agreed best practice for the best level of care. While the seven steps appear in a linear model, in practice, patient care does not always occur in this way but depends on the particular situation (e.g. the type of cancer, when and how the cancer is diagnosed, prognosis, management, the patient’s decisions and their physiological response to treatment).

The principles underpinning optimal care pathways always put patients at the centre of care throughout their experience and prompt the healthcare system to deliver coordinated care.

The optimal care pathways do not constitute medical advice or replace clinical judgement, and they refer to clinical guidelines and other resources where appropriate.

The optimal care pathway

Evidence-based guidelines, where they exist, should inform timeframes. Treatment teams need to recognise that shorter timeframes for appropriate consultations and treatment can promote a better experience for patients. Three steps in the pathway specify timeframes for care. They are designed to help patients understand the timeframes in which they can expect to be assessed and treated, and to help health services plan care delivery in accordance with expert-informed time parameters to meet the expectation of patients. These timeframes are based on expert advice from the Head and Neck Cancer Working Group.

Timeframes for care

Step in pathway

Care point

Timeframe

Presentation, initial investigations and referral

Signs and symptoms

Presenting symptoms should be promptly and clinically triaged with a health professional

Initial investigations initiated by GP

Signs and symptoms should be investigated if they persist for more than 3 weeks

Referral to specialist

Specialist appointment should be within 2 weeks of referral

Diagnosis, staging and treatment planning

Diagnosis and staging

Performed under supervision of a member of a head and neck multidisciplinary team and should be conducted within 2 weeks of the specialist appointment

Multidisciplinary meeting and treatment planning

The first MDM should be within 2 weeks of receiving the diagnosis and staging results

Treatment

Surgery

Surgery should be scheduled within 4 weeks of the MDM. Time from definitive surgery to beginning adjuvant treatment (plus concomitant systemic therapy when indicated) should be not more than 6 weeks

Radiation therapy +/- systemic therapy

If radiation therapy or systemic therapy is the primary treatment modality at the time from the MDM to starting treatment, it should begin within 4 weeks for curative intent and within 2 weeks for palliative intent

If systemic therapy is being used concurrently with radiation therapy, it should begin within 1 week of radiation therapy

Radiation therapy as an adjuvant treatment should begin within six weeks after surgery

Seven steps of the optimal care pathway

Step 1: Prevention and early detection

Step 2: Presentation, initial investigations and referral

Step 3: Diagnosis, staging and treatment planning

Step 4: Treatment

Step 5: Care after initial treatment and recovery

Step 6: Managing recurrent, residual or metastatic disease

Step 7: End-of-life care

Head and neck cancer is the seventh most commonly diagnosed cancer in Australia (Koh et al. 2019). The estimated number of new cases of head and neck cancer diagnosed in Australia in 2019 was 5,212 (Cancer Australia 2019b). Head and neck cancer is more prevalent in males than females, with 3,807 males diagnosed and 1,405 females diagnosed in 2019 (Cancer Australia 2019b).

The pathway covers the following head and neck cancers: mouth or oral cancer; salivary gland cancer; pharyngeal or throat cancer, incorporating nasopharyngeal, oropharyngeal and hypopharyngeal cancers; laryngeal cancer; and nasal or paranasal sinus cancer. The pathway is also applicable to thyroid cancer, cancers of the cervical oesophagus, cancers of unknown primary that first appear in the head and neck, and cancer in the skin of the head and neck in the context of high-risk and advanced skin cancer.

This step outlines recommendations for the prevention and early detection of head and neck cancer.

Evidence shows that not smoking, avoiding or limiting alcohol intake, eating a healthy diet, maintaining a healthy body weight, being physically active, being sun smart and avoiding exposure to oncoviruses or carcinogens may help reduce cancer risk (Cancer Council Australia 2018).

Recommendations for preventing head and neck cancer include:

  • smoking cessation – all patients who currently smoke (or have recently quit) should be offered best practice tobacco dependence treatment, an opt-out referral to a behavioural intervention service such as Quitline, and prescribed smoking cessation pharmacotherapy, if clinically appropriate; conversations about smoking can be framed using the Ask, Advise, Help model:
    • ask all patients about smoking status and document in their medical record
    • advise all patients who smoke to quit in a clear, non-confrontational and personalised way, and advise of the best way to quit
    • help all patients who smoke to quit by offering a referral for behavioural intervention (e.g. Quitline) and prescribing pharmacotherapy (e.g. nicotine replacement therapy), if clinically appropriate
  • avoiding exposure to second-hand tobacco smoke – smoking cessation care should be offered to the patient’s partner (and significant others) who smoke
  • avoiding or reducing alcohol intake, ultraviolet (UV) exposure and occupational exposure to asbestos, wood dust, nickel alloy and silica dust
  • vaccinating against the human papillomavirus (HPV) – follow recommended guidelines against protection from HPV (Australian Government Department of Health 2018)
  • good oral hygiene including well-fitting dentures to prevent ulceration
  • eating healthily as per the Australian dietary guidelines (Eat for Health 2015) and maintaining a healthy body weight.

The most important risk factor for developing head and neck cancer is tobacco use (Jethwa & Khariwala 2017). Combined tobacco and alcohol use has a synergistic effect on the risk of developing head and neck cancer, with people who frequently smoke and consume alcohol being at the highest risk (Hashibe et al. 2009).

Risk factors for developing head and neck cancer include:

  • smoking, chewing tobacco or chewing betel quid
  • alcohol consumption
  • HPV exposure (Kobayashi et al. 2018)
  • UV skin exposure (for skin cancer)
  • pre-existing oral lesions
  • poor oral hygiene
  • age (over 40 years)
  • sex (male)
  • Epstein-Barr virus infection in genetically predisposed individuals (for nasopharyngeal cancer)
  • immunosuppression
  • ionising radiation exposure
  • inherited conditions including Fanconi’s anaemia, ataxia-telangiectasia syndrome, Bloom’s syndrome and Li-Fraumeni cancer syndrome
  • poor nutrition.

People with lower income and other disadvantaged groups are at greater risk of head and neck cancer. This includes Aboriginal and Torres Strait Islander people, who are more likely to develop head and neck cancer, including oral cancer, than non-Aboriginal people.

Everyone should be encouraged to reduce their modifiable risk factors, including taking the steps outlined in section 1.1.

There are currently no formal screening programs in Australia for detecting head and neck cancer. Opportunistic screening should be conducted during general health examinations and dental check-ups.

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 signs and symptoms should be investigated if they persist for more than three weeks, and especially if more than one symptom is present:

  • mouth ulcer or mass
  • unexplained tooth mobility and/or non-healing dental extraction site
  • white or red patches of oral mucosa (leukoplakia)
  • persisting lip ulcers or patches
  • changes in the voice, such as hoarseness
  • persistent sore throat (particularly together with earache) or cough
  • difficulty or pain when swallowing or chewing
  • coughing up blood (including spitting up blood)
  • persistent unexplained neck or parotid lump or sore
  • pain, pressure, unilateral ringing in the ear, or hearing loss
  • unilateral paralysis of the muscles in the face
  • unilateral numbness, tingling, pins and needles or formication (feeling of insects crawling on the skin)
  • unilateral blockage of the nose, especially if associated with swelling or other problems with the eyes such as double vision
  • trismus (lockjaw) or reduced jaw opening
  • unexplained weight loss.

The presence of multiple signs and symptoms, particularly in combination with other underlying risk factors, indicates an increased risk of head and neck cancer.

Presenting symptoms should be promptly and clinically triaged with a health professional.

General practitioner examinations and investigations may include (but should not delay specialist assessment):

  • structural imaging with ultrasound, CT and/or MRI
  • ultrasound-guided fine-needle aspiration cytology (USgFNAC) of a node, if malignancy is suspected or a neck lump persists or grows (including lumps in the thyroid, salivary gland or lymph node).

Excisional biopsy of potentially malignant lesions should not be undertaken. Appropriately trained practitioners can consider biopsy of a primary site but this should not delay referral. Lymph nodes should not have incisional or excisional biopsy without specialist input.

Signs and symptoms (listed in 2.1) should be investigated if they persist for more than three weeks, especially if more than one symptom is present.

If the cancer diagnosis is confirmed or the results are inconsistent or indeterminate, the general practitioner or dental practitioner must refer the patient to an appropriate specialist to make the diagnosis. For suspected or confirmed head and neck cancer, referral should be to a head and neck surgeon connected to a head and neck multidisciplinary team. For suspected or confirmed oral cancer, referral could also be made to a maxillofacial surgeon.

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 head and neck cancer 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.

The first specialist appointment should take place within two weeks of the initial referral from the general or dental practitioner.

The patient must be informed about the improved outcomes achieved at centres that treat higher numbers of complex head and neck cancer cases.

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 including ear/throat pain, trouble swallowing/talking and weight loss
  • encouragement and support to increase levels of exercise (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).
More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 3 outlines the process for confirming the diagnosis and stage of cancer and for planning subsequent treatment. The guiding principle is that interaction between appropriate multidisciplinary team members should determine the treatment plan.

The treatment team, after taking a thorough medical history and making a thorough medical examination of the patient, should undertake the following investigations under the guidance of a specialist:

  • complete head and neck examination, including endoscopy
  • structural imaging such as ultrasound, CT, MRI or PET scans to evaluate the primary site, regional lymph nodes and sites of possible distant metastases (scans should ideally be performed prior to biopsy of the primary site to avoid upstaging the cancer because of biopsy-induced oedema) (Roland et al. 2016)
  • biopsy (arranged by a practitioner with appropriate training and current experience) to confirm pathological diagnosis and prognostic markers such as p16, EBV BRAF status where indicated (under local or general anaesthetic if required).

Diagnostic investigations should be performed under the supervision of a member of a head and neck multidisciplinary team and should be conducted within two weeks of the specialist appointment.

There is currently no established role for genetic testing for most head and neck cancers.

Nasopharyngeal carcinoma has a higher incidence in people of Chinese or Southern European background, but there is no genetic test to identify specific individuals at risk.

More than a third (35–40 per cent) of paragangliomas (PG) occur due to an underlying hereditary PG or phaeochromocytoma syndrome. When tissue is available for a pathological examination, PG patients should be screened for an underlying SDH mutation (Hampel et al. 2015), performed by pathology or requested by a familial cancer centre. Genetic testing at a familial cancer centre is also indicated of people with a family history of PG/phaeochromocytoma, young-age onset, multiple PG or rare associated features.

Medicare funds some genetic tests via a Medicare Benefits Schedule (MBS) item number but most are not. Depending on the personal and family history, the relevant state health system may fund public sector genetic testing.

Pre-test counselling and informed consent is required before any genetic testing. In some states the treating team can offer ‘mainstream’ diagnostic genetic testing, after which referral is made to a familial cancer service if a pathogenic gene variant is identified. The familial cancer service can provide risk management advice, facilitate family risk notification and arrange predictive genetic testing for the family.

Visit the Centre for Genetics Education website for basic information about cancer in a family.

Pharmacogenetics describes how individual genetic differences can lead to differences in the way certain medicines interact with the body. These interactions can affect the effectiveness of medications and any side effects. Applying pharmacogenetics to treatment planning may help patients to be prescribed the most appropriate treatment at the optimal dose from the beginning of treatment (NHMRC 2013).

Staging is a critical element in treatment planning and should be clearly documented in the patient’s medical record. Staging for head and neck cancer involves the tests listed in section 3.1.

More information

 

Visit the Cancer Institute New South Wales website for information about understanding the stages of cancer.

Patient performance status is a central factor in cancer care and should be clearly documented in the patient’s medical record.

Performance status should be measured and recorded using an established scale such as the Karnofsky scale or the Eastern Cooperative Oncology Group (ECOG) scale.

A number of factors should be considered at this stage:

  • the patient’s overall condition, life expectancy, personal preferences and decision- making capacity
  • discussing the multidisciplinary team approach to care with the patient
  • appropriate and timely referral to an MDM
  • pregnancy and fertility
  • support with travel and accommodation
  • teleconferencing or videoconferencing as required.

The multidisciplinary team should meet to discuss newly diagnosed patients before definitive treatment so that a treatment plan can be recommended and there can be early preparation for the post-treatment phase. The first MDM should be conducted within two weeks of receiving the diagnosis and staging results. The level of discussion may vary, depending on the patient’s clinical and supportive care factors. Some patients with non-complex cancers may not be discussed by a multidisciplinary team; instead the team may have treatment plan protocols that will be applied if the patient’s case (cancer) meets the criteria. If patients are not discussed at an MDM, they should at least be named on the agenda for noting. The proposed treatment must be recorded in the patient’s medical record and should be recorded in an MDM database where one exists.

Teams may agree on standard treatment protocols for non-complex care, facilitating patient review (by exception) and associated data capture.

Results of all relevant tests and access to images should be available for the MDM. Information about the patient’s concerns, preferences and social and cultural circumstances should also be available.

The multidisciplinary team requires administrative support in developing the agenda for the meeting, for collating patient information and to ensure appropriate expertise around the table to create an effective treatment plan for the patient. The MDM has a chair and multiple lead clinicians. Each patient case will be presented by a lead clinician (usually someone who has seen the patient before the MDM). In public hospital settings, the registrar or clinical fellow may take this role. A member of the team records the outcomes of the discussion and treatment plan in the patient history and ensures these details are communicated to the patient’s general practitioner. The team should consider the patient’s values, beliefs and cultural needs as appropriate to ensure the treatment plan is in line with these. There may be early consideration of post-treatment pathways at this point – for example, shared follow-up care.

The multidisciplinary team should be composed of the core disciplines that are integral to providing good care. Team membership should reflect both clinical and supportive care aspects of care. Pathology and radiology expertise are essential.

See ‘About this OCP’ for a list of team members who may be included in the multidisciplinary team for head and neck cancer.

Core members of the multidisciplinary team are expected to attend most MDMs either in person or remotely via virtual mechanisms. Additional expertise or specialist services may be required for some patients. An Aboriginal and Torres Strait Islander cultural expert should be considered for all patients who identify as Aboriginal or Torres Strait Islander.

The general practitioner who made the referral is responsible for the patient until care is passed to another practitioner who is directly involved in planning the patient’s care.

The general practitioner may play a number of roles in all stages of the cancer pathway including diagnosis, referral, treatment, shared follow-up care, post-treatment surveillance, coordination and continuity of care, as well as managing existing health issues and providing information and support to the patient, their family and carer.

A nominated contact person from the multidisciplinary team may be assigned responsibility for coordinating care in this phase. Care coordinators are responsible for ensuring there is continuity throughout the care process and coordination of all necessary care for a particular phase (COSA 2015). The care coordinator may change over the course of the pathway.

The lead clinician is responsible for overseeing the activity of the team and for implementing treatment within the multidisciplinary setting.

Patients should be encouraged to participate in research or clinical trials where available and appropriate.

For more information visit the Cancer Australia website.

Cancer prehabilitation uses a multidisciplinary approach combining exercise, nutrition and psychological strategies to prepare patients for the challenges of cancer treatment such as surgery, systemic therapy and radiation therapy. Team members may include anaesthetists, oncologists, surgeons, haematologists, clinical psychologists, exercise physiologists, physiotherapists, speech pathologists and dietitians, among others.

Patient performance status is a central factor in cancer care and should be frequently assessed. All patients should be screened for malnutrition using a validated tool, such as the Malnutrition Screening Tool (MST). The lead clinician may refer obese or malnourished patients to a dietitian preoperatively or before other treatments begin. Patients who have dysphagia and are symptomatic may be referred to speech pathology before surgery.

Patients who currently smoke should be encouraged to stop smoking before receiving treatment. This should include an offer of referral to Quitline in addition to smoking cessation pharmacotherapy if clinically appropriate.

Evidence indicates that patients who respond well to prehabilitation may have fewer complications after treatment. For example, those who were exercising before diagnosis and patients who use prehabilitation before starting treatment may improve their physical or psychological outcomes, or both, and this helps patients to function at a higher level throughout their cancer treatment (Cormie et al. 2017; Silver 2015).

For patients with head and neck cancer, the multidisciplinary team should consider these specific prehabilitation assessments and interventions for treatment-related complications or major side effects:

  • conducting a physical and psychological assessment to establish a baseline function level
  • having a dental assessment before beginning treatment including developing a preventative dental plan
  • identifying impairments and providing targeted interventions to improve the patient’s function level (Silver & Baima 2013); it is important to also address the patient’s odynophagia
  • reviewing the patient’s medication to ensure optimisation and to improve adherence to medicine used for comorbid conditions.

Following completion of primary cancer treatment, rehabilitation programs have considerable potential to enhance physical function.

Cancer and cancer treatment may cause fertility problems. This will depend on the age of the patient, the type of cancer and the treatment received. Infertility can range from difficulty having a child to the inability to have a child. Infertility after treatment may be temporary, lasting months to years, or permanent (AYA Cancer Fertility Preservation Guidance Working Group 2014).

Patients need to be advised about and potentially referred for discussion about fertility preservation before starting treatment and need advice about contraception before, during and after treatment. Patients and their family should be aware of the ongoing costs involved in optimising fertility. Fertility management may apply in both men and women. Fertility preservation options are different for men and women and the need for ongoing contraception applies to both men and women.

The potential for impaired fertility should be discussed and reinforced at different time points as appropriate throughout the diagnosis, treatment, surveillance and survivorship phases of care. These ongoing discussions will enable the patient and, if applicable, the family to make informed decisions. All discussions should be documented in the patient’s medical record.

More information

See the Cancer Council website for more information.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with psychological and emotional distress while adjusting to the diagnosis; treatment phobias; existential concerns; stress; difficulties making treatment decisions; anxiety or depression or both; psychosexual issues such as potential loss of fertility and premature menopause; history of sexual abuse; and interpersonal problems
  • support for alcohol and drug addiction
  • advice and assistance to stop smoking, chewing tobacco or chewing betel quid
  • management of physical symptoms such as pain and fatigue (Australian Adult Cancer Pain Management Guideline Working Party 2019)
  • a prompt referral to the required discipline if problems are identified (e.g. dietetics, speech pathology)
  • a comprehensive speech pathology assessment and education for patients who are being considered for total laryngectomy (they should also be offered the opportunity to speak with a consumer who has undergone a laryngectomy)
  • a physiotherapy assessment and introduction to a postoperative exercise regime to minimise/treat any associated shoulder dysfunction for patients who are being considered for neck dissection
  • decisions regarding enteral nutrition for high-risk patients, with relevant referrals made (e.g. gastrointestinal surgery, gastroenterology, radiology and dietetics)
  • pre-treatment screening for unintentional weight loss, oral health, communication and swallowing function
  • malnutrition or undernutrition, identified using a validated nutrition screening tool such as the MST (note that many patients with a high BMI [obese patients] may also be malnourished [WHO 2018])
  • support for families or carers who are distressed with the patient’s cancer diagnosis
  • support for families/relatives who may be distressed after learning of a genetically linked cancer diagnosis
  • specific spiritual needs that may benefit from the involvement of pastoral/spiritual care.

Additionally, palliative care may be required at this stage.

For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.

In discussion with the patient, the lead clinician should undertake the following:

  • establish if the patient has a regular or preferred general practitioner and if the patient does not have one, then encourage them to find one
  • provide written information appropriate to the health literacy of the patient about the diagnosis and treatment to the patient and carer and refer the patient to the Guide to best cancer care (consumer optimal care pathway) for head and neck cancer, as well as to relevant websites and support groups as appropriate
  • provide a treatment care plan including contact details for the treating team and information on when to call the hospital
  • discuss a timeframe for diagnosis and treatment with the patient and carer
  • discuss the benefits of multidisciplinary care and gain the patient’s consent before presenting their case at an MDM
  • provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy, if clinically appropriate
  • recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and avoid or reduce alcohol consumption among other considerations
  • communicate the benefits of continued engagement with primary care during treatment for managing comorbid disease, health promotion, care coordination and holistic care
  • where appropriate, review fertility needs with the patient and refer for specialist fertility management (including fertility preservation, contraception, management during pregnancy and of future pregnancies)
  • be open to and encourage discussion about the diagnosis, prognosis (if the patient wishes to know) and survivorship and palliative care while clarifying the patient’s preferences and needs, personal and cultural beliefs and expectations, and their ability to comprehend the communication
  • encourage the patient to participate in advance care planning including considering appointing one or more substitute decision-makers and completing an advance care directive to clearly document their treatment preferences. Each state and territory has different terminology and legislation surrounding advance care directives and substitute decision-makers.

The lead clinician has these communication responsibilities:

  • involving the general practitioner from the point of diagnosis
  • ensuring regular and timely communication with the general practitioner about the diagnosis, treatment plan and recommendations from MDMs and inviting them to participate in MDMs (consider using virtual mechanisms)
  • supporting the role of general practice both during and after treatment
  • discussing shared or team care arrangements with general practitioners or regional cancer specialists, or both, together with the patient.
More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 4 describes the optimal treatments for head and neck cancer, the training and experience required of the treating clinicians and the health service characteristics required for optimal cancer care.

All health services must have clinical governance systems that meet the following integral requirements:

  • identifying safety and quality measures
  • monitoring and reporting on performance and outcomes
  • identifying areas for improvement in safety and quality (ACSQHC 2020).

Step 4 outlines the treatment options for head and neck cancer. For detailed clinical information on treatment options refer to these resources:

The intent of treatment can be defined as one of the following:

  • curative
  • palliative, which may include anti-cancer therapy to improve quality of life or longevity (or both) without expectation of cure, or symptomatic treatment only.

The treatment intent should be established in a multidisciplinary setting, documented in the patient’s medical record and conveyed to the patient and carer as appropriate.

The potential benefits need to be balanced against the morbidity and risks of treatment.

The lead clinician should discuss the advantages and disadvantages of each treatment and associated potential side effects with the patient and their carer or family before treatment consent is obtained and begins so the patient can make an informed decision. Supportive care services should also be considered during this decision-making process. Patients should be asked about their use of (current or intended) complementary therapies (see Appendix D).

Timeframes for starting treatment should be informed by evidence-based guidelines where they exist. The treatment team should recognise that shorter timeframes for appropriate consultations and treatment can promote a better experience for patients.

Initiate advance care planning discussions with patients before treatment begins (this could include appointing a substitute decision-maker and completing an advance care directive). Formally involving a palliative care team/service may benefit any patient, so it is important to know and respect each person’s preference (AHMAC 2011).

Many head and neck cancer patients will benefit from surgery. Patients at high risk of locoregional recurrence will also benefit from adjuvant postoperative radiation treatment.

Surgery can be used as the primary treatment of a number of head and neck cancers with curative intent. It can be used to salvage residual or recurrent disease or in the palliative management of some patients.

Timeframe for starting treatment

Surgery should be scheduled within four weeks of the MDM.

The time from definitive surgery to starting adjuvant treatment (plus concomitant systemic therapy when indicated) should be not more than six weeks.

Training and experience required of the surgeon

Fellow of the Royal Australian College of Surgeons or equivalent, with adequate training and experience that enables institutional credentialing and agreed scope of practice in head and neck cancers (ACSQHC 2015).

It is also necessary for the surgeon to have ongoing and regular attendance at and a commitment to MDMs and continuing professional development in head and neck oncology. All cancer surgeons should actively participate in regular audits of their surgical results and their oncological outcomes with functional outcome measures.

Documented evidence of the surgeon’s training and experience, including their specific (sub-specialty) experience with head and neck cancer and procedures to be undertaken, should be available.

Surgeons who undertake a high volume of resections have better clinical outcomes for complex cancer surgery and improved survival for their patients (David et al. 2017; Eskander et al. 2014; Liu et al. 2019).

Health service characteristics

To provide safe and high-quality care for patients having surgery, health services should have these features:

  • critical care support
  • 24-hour medical staff availability
  • 24-hour operating room access and intensive care unit
  • appropriate nursing and theatre resources to manage complex head and neck surgery
  • diagnostic imaging including access to instrumental swallowing assessments
  • pathology
  • nuclear medicine imaging
  • nurses, dietitians, dentists and speech pathologists with training and current experience in managing patients with head and neck cancer
  • a clearly defined path to emergency care and advice after hours
  • a clearly defined path and assured access to inpatient care
  • ability to perform or refer to ancillary study.

Radiation therapy can be used as the primary curative treatment of several head and neck cancers and may be given concurrently with systemic therapy. It can be given following surgery (postoperatively) for patients at high risk of locoregional recurrence. It is also useful in palliative care.

Patients should have access to a dietitian and a speech pathologist within the radiation therapy centre, who should liaise closely with their counterparts in the patient’s local support team.

Outcomes are improved for patients receiving curative radiation therapy for head and neck cancers when they are treated by radiation oncologists who have larger head and neck cancer caseloads (Boero et al. 2016; Wuthrick et al. 2014).

Timeframe for starting treatment

Radiation therapy as a primary treatment:

  • for curative intent – start within four weeks of the MDM
  • for palliative intent – start within two weeks of the MDM.

Radiation therapy as an adjuvant treatment should begin within six weeks after surgery.

Training and experience required of the appropriate specialists

Fellowship of the Royal Australian and New Zealand College of Radiologists or equivalent, with adequate training and experience, institutional credentialing and agreed scope of practice in head and neck cancers (ACSQHC 2015). It is also necessary for the radiation oncologist to have ongoing and regular attendance at and a commitment to MDMs and continuing professional development in head and neck oncology.

The training and experience of the radiation oncologist should be documented.

Health service unit characteristics

To provide safe and quality care for patients having radiation therapy, health services should have these features:

  • linear accelerator (LINAC) capable of image-guided radiation therapy (IGRT)
  • dedicated CT planning
  • access to MRI and PET imaging
  • automatic record-verify of all radiation treatments delivered
  • a treatment planning system
  • trained medical physicists, radiation therapists and nurses with radiation therapy experience
  • nurses, dietitians, dentists, speech pathologists and social workers with training and current experience in managing patients with head and neck cancer
  • on-site or an existing relationship with specialist dental services before fitting a treatment mask
  • head and neck cancer–specific peer review
  • a clearly defined path to emergency care and advice after hours
  • a clearly defined path and assured access to inpatient care
  • coordination for combined therapy with systemic therapy, especially where facilities are not co-located
  • participation in Australian Clinical Dosimetry Service audits
  • an incident management system linked with a quality management system.

Systemic therapy, concurrent with radiation therapy, can be used as the primary curative treatment or as an adjuvant treatment for several head and neck cancers. It has been shown to improve local control and add a survival benefit compared with radiation therapy alone in high-risk patients with good performance status. Neoadjuvant systemic therapy (before radiation therapy) is also appropriate in a small number of clinical scenarios. Targeted biological agents and immunotherapy are the standards of care for some recurrent head and neck cancers.

Systemic therapy is also used in palliative treatment.

Timeframes for starting treatment

Systemic therapy as a primary treatment:

  • with curative intent – start within four weeks of the MDM
  • for palliative intent – start within two weeks of the MDM
  • if being used concurrently with radiation therapy, it should start within week one of radiation therapy.

Training and experience required of the appropriate specialists

Medical oncologists must have training and experience of this standard:

  • Fellow of the Royal Australian College of Physicians (or equivalent)
  • adequate training and experience that enables institutional credentialing and agreed scope of practice within this area (ACSQHC 2015).

It is also necessary for the medical oncologist to have ongoing and regular attendance at and a commitment to MDMs and continuing professional development in head and neck oncology.

Cancer nurses should have accredited training in these areas:

  • anti-cancer treatment administration
  • specialised nursing care for patients undergoing cancer treatments, including side effects and symptom management
  • the handling and disposal of cytotoxic waste (ACSQHC 2020).

Systemic therapy should be prepared by a pharmacist whose background includes this experience:

  • adequate training in systemic therapy medication, including dosing calculations according to protocols, formulations and/or preparation.

In a setting where no medical oncologist is locally available (e.g. regional or remote areas), some components of less complex therapies may be delivered by a general practitioner or nurse with training and experience that enables credentialing and agreed scope of practice within this area. This should be in accordance with a detailed treatment plan or agreed protocol, and with communication as agreed with the medical oncologist or as clinically required.

The training and experience of the appropriate specialist should be documented.

Health service characteristics

To provide safe and quality care for patients having systemic therapy, health services should have these features:

  • a clearly defined path to emergency care and advice after hours
  • access to diagnostic pathology including basic haematology and biochemistry, and imaging
  • cytotoxic drugs prepared in a pharmacy with appropriate facilities
  • occupational health and safety guidelines regarding handling of cytotoxic drugs, including preparation, waste procedures and spill kits (eviQ 2019)
  • guidelines and protocols to deliver treatment safely (including dealing with extravasation of drugs)
  • coordination for combined therapy with radiation therapy, especially where facilities are not co-located
  • appropriate molecular pathology access
  • nurses, dietitians, dentists and speech pathologists with training and current experience in managing patients with head and neck cancer
  • a clearly defined path and assured access to inpatient care.

The state of medical therapies for cancer is constantly changing, and new treatments are routinely being trialled. Any decision on the use of targeted and immune therapies should include input from a medical oncologist and the patient.

For many patients, a clinical trial will be the best way to manage them, and access to clinical trials should always be considered.

A number of emerging therapies are being investigated for head and neck cancers. Therapies that show promise for treating head and neck cancers include:

  • targeted therapy
  • immunotherapy (Santuray et al. 2018)
  • cell therapy (Qureshi & Lee 2019).

Encourage enrolment in clinical trials where available. A pathway to clinical trials should be facilitated by the lead multidisciplinary team clinician.

The key principle for precision medicine is prompt and clinically oriented communication and coordination with an accredited laboratory and pathologist. Tissue analysis is integral for access to emerging therapies and, as such, tissue specimens should be treated carefully to enable additional histopathological or molecular diagnostic tests in certain scenarios.

Early referral to palliative care can improve the quality of life for people with cancer and in some cases may be associated with survival benefits (Haines 2011; Temel at al. 2010; Zimmermann et al. 2014). This is particularly true for cancers with poor prognosis.

The lead clinician should ensure patients receive timely and appropriate referral to palliative care services. Referral should be based on need rather than prognosis. Emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers.

The ‘Dying to Talk’ resource may help health professionals when initiating discussions with patients about future care needs (see ‘More information’). Ensure that carers and families receive information, support and guidance about their role in palliative care (Palliative Care Australia 2018).

Patients, with support from their family or carer and treating team, should be encouraged to consider appointing a substitute decision-maker and to complete an advance care directive.

Refer to Step 6 for a more detailed description of managing patients with recurrent, residual or metastatic disease.

More information

These online resources are useful:

The team should support the patient to participate in research or clinical trials where available and appropriate. Many emerging treatments are only available on clinical trials that may require referral to certain trial centres.

For more information visit the Cancer Australia website.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with emotional and psychological issues, including body image concerns, fatigue, quitting smoking, traumatic experiences, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns
  • potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
  • management of physical symptoms such as pain and fatigue
  • management of oral side effects of head and neck cancer treatments, which may require input from a special needs dentist
  • support for malnutrition, which can occur as a result of disease or treatment – validated malnutrition screening tools such as MST should be used at the key points in the care pathway to identify patients at risk of malnutrition and refer to a dietitian for early nutrition intervention (all patients with a head and neck cancer diagnosis receiving radiation therapy should be referred to a dietitian for assessment and intervention)
  • dietitian management of nutrition intake (oral diet and enteral feeding), weight loss and symptom management through dietary counselling
  • speech pathology for patients who present with symptoms of aspiration (coughing when eating or drinking), have undergone a laryngectomy, have communication impairments or have swallowing difficulties including trismus
  • postoperative physiotherapy for respiratory assessment and treatment, including secretion management, particularly in the case of laryngectomy or temporary tracheostomy
  • physiotherapy for musculoskeletal changes such as shoulder and neck pain or dysfunction following treatment
  • physiotherapy or occupational therapy (therapist trained in lymphoedema) for neck mobility or head and neck lymphoedema
  • occupational therapy for cancer fatigue/endurance
  • occupational therapy or psychology support for social skills training and/or a social worker for family liaison to help to reduce psychosocial difficulties
  • support with changes in physical appearance that impact on social and mental wellbeing
  • support for breathing, swallowing or communicating if a long-term tracheostomy is required or if the patient underwent a total laryngectomy
  • referral to prosthesis to restore facial appearance when necessary
  • referral to a pharmacist for people managing multiple medications
  • help with a decline in mobility or functional status as a result of treatment
  • assistance with beginning or resuming regular exercise with referral to an exercise physiologist or physiotherapist (COSA 2018; Hayes et al. 2019).

Early involvement of general practitioners may lead to improved cancer survivorship care following acute treatment. General practitioners can address many supportive care needs through good communication and clear guidance from the specialist team (Emery 2014).

Patients, carers and families may have these additional issues and needs:

  • financial issues related to loss of income (through reduced capacity to work or loss of work) and additional expenses as a result of illness or treatment
  • advance care planning, which may involve appointing a substitute decision-maker and completing an advance care directive
  • legal issues (completing a will, care of dependent children) or making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Cancer Council’s 13 11 20 information and support line can assist with information and referral to local support services.

Refer to Quitline 13 78 48 for information and support to quit smoking.

For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.

Rehabilitation may be required at any point of the care pathway. If it is required before treatment, it is referred to as prehabilitation (see section 3.6.1).

All members of the multidisciplinary team have an important role in promoting rehabilitation. Team members may include occupational therapists, speech pathologists, dietitians, social workers, psychologists, physiotherapists, exercise physiologists, dentists, audiologists, prosthodontists and rehabilitation specialists.

To maximise the safety and therapeutic effect of exercise for people with cancer, all team members should recommend that people with cancer work towards achieving, and then maintaining, recommended levels of exercise and physical activity as per relevant guidelines. Exercise should be prescribed and delivered under the direction of an accredited exercise physiologist or physiotherapist with experience in cancer care (Vardy et al. 2019). The focus of intervention from these health professionals is tailoring evidence-based exercise recommendations to the individual patient’s needs and abilities, with a focus on the patient transitioning to ongoing self-managed exercise.

Other issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, addressing shoulder and neck musculoskeletal dysfunction, achieving independence in daily tasks, optimising nutritional intake, returning to work and ongoing adjustment to cancer and its sequels. Referrals to dietitians, psychosocial support, return-to-work programs and community support organisations can help in managing these issues.

Rehabilitation also includes the longer term surgical rehabilitation of patients including adjunctive procedures to improve appearance, and for oral and head and neck functions.

The lead or nominated clinician should take responsibility for these tasks:

  • discussing treatment options with patients and carers, including the treatment intent and expected outcomes, and providing a written version of the plan and any referrals
  • providing patients and carers with information about the possible side effects of treatment, managing symptoms between active treatments, how to access care, self-management strategies and emergency contacts
  • encouraging patients to use question prompt lists and audio recordings, and to have a support person present to aid informed decision making
  • initiating a discussion about advance care planning and involving carers or family if the patient wishes.

The general practitioner plays an important role in coordinating care for patients, including helping to manage side effects and other comorbidities, and offering support when patients have questions or worries. For most patients, simultaneous care provided by their general practitioner is very important.

The lead clinician, in discussion with the patient’s general practitioner, should consider these points:

  • the general practitioner’s role in symptom management, supportive care and referral to local services
  • using a chronic disease management plan and mental health care management plan
  • how to ensure regular and timely two-way communication about:
    • the treatment plan, including intent and potential side effects
    • supportive and palliative care requirements
    • the patient’s prognosis and their understanding of this
    • enrolment in research or clinical trials
    • changes in treatment or medications
    • the presence of an advance care directive or appointment of a substitute decision-maker
    • recommendations from the multidisciplinary team.
More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

The term ‘cancer survivor’ describes a person living with cancer, from the point of diagnosis until the end of life. Survivorship care in Australia has traditionally been provided to patients who have completed active treatment and are in the post-treatment phase. But there is now a shift to provide survivorship care and services from the point of diagnosis to improve cancer-related outcomes.

Cancer survivors may experience inferior quality of life and cancer-related symptoms for up to five years after their diagnosis (Jefford et al. 2017). Distress, fear of cancer recurrence, fatigue, obesity and sedentary lifestyle are common symptoms reported by cancer survivors (Vardy et al. 2019).

Due to an ageing population and improvements in treatments and supportive care, the number of people surviving cancer is increasing. International research shows there is an important need to focus on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors often face issues that are different from those experienced during active treatment for cancer and may include a range issues, as well as unmet needs that affect their quality of life (Lisy et al. 2019; Tan et al. 2019).

Physical, emotional and psychological issues include fear of cancer recurrence, cancer-related fatigue, pain, distress, anxiety, depression, cognitive changes and sleep issues (Lisy et al. 2019). Late effects may occur months or years later and depend on the type of cancer treatment. Survivors and their carers may experience impacted relationships and practical issues including difficulties with return to work or study and financial hardship. They may also experience changes to sex and intimacy. Fertility, contraception and pregnancy care after treatment may require specialist input. Long-term eating and drinking difficulties can also affect a person’s social life (e.g. eating out) and lead to increased isolation.

The Institute of Medicine, in its report From cancer patient to cancer survivor: Lost in transition, describes the essential components of survivorship care listed in the paragraph above, including interventions and surveillance mechanisms to manage the issues a cancer survivor may face (Hewitt et al. 2006). Access to a range of health professions may be required including physiotherapy, occupational therapy, dietetics, speech pathology, dental, audiology, social work, dietetics, clinical psychology, fertility and palliative care. Coordinating care between all providers is essential to ensure the patient’s needs are met.

Cancer survivors are more likely than the general population to have and/or develop comorbidities (Vijayvergia & Denlinger 2015). Health professionals should support survivors to self-manage their own health needs and to make informed decisions about lifestyle behaviours that promote wellness and improve their quality of life (Australian Cancer Survivorship Centre 2016; Cancer Australia 2017; NCSI 2015).

The transition from active treatment to post-treatment care is critical to long-term health. In some cases, people will need ongoing, hospital-based care, and in other cases a shared follow-up care arrangement with their general practitioner may be appropriate. This will vary depending on the type and stage of cancer and needs to be planned.

Shared follow-up care involves the joint participation of specialists and general practitioners in the planned delivery of follow-up and survivorship care. A shared care plan is developed that outlines the responsibilities of members of the care team, the follow-up schedule, triggers for review, plans for rapid access into each setting and agreement regarding format, frequency and triggers for communication.

After completing initial treatment, a designated member of the multidisciplinary team (most commonly nursing or medical staff involved in the patient’s care) should provide the patient with a needs assessment and treatment summary and develop a survivorship care plan in conjunction with the patient. This should include a comprehensive list of issues identified by all members of the multidisciplinary team involved in the patient’s care and by the patient. These documents are key resources for the patient and their healthcare providers and can be used to improve communication and care coordination.

The treatment summary should cover, but is not limited to:

  • the diagnostic tests performed and results
  • diagnosis including stage, prognostic or severity score
  • tumour characteristics
  • treatment received (types and dates)
  • current toxicities (severity, management and expected outcomes)
  • interventions and treatment plans from other health providers
  • potential long-term and late effects of treatment
  • supportive care services provided
  • follow-up schedule
  • contact information for key healthcare providers.

Responsibility for follow-up care should be agreed between the lead clinician, the general practitioner, relevant members of the multidisciplinary team and the patient. This is based on guideline recommendations for post-treatment care, as well as the patient’s current and anticipated physical and emotional needs and preferences.

Evidence comparing shared follow-up care and specialised care indicates equivalence in outcomes including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).

Ongoing communication between healthcare providers involved in care and a clear understanding of roles and responsibilities is key to effective survivorship care.

In particular circumstances, other models of post-treatment care can be safely and effectively provided such as nurse-led models of care (Monterosso et al. 2019). Other models of post-treatment care can be provided in these locations or by these health professionals:

  • in a shared care setting
  • in a general practice setting
  • by non-medical staff
  • by allied health or nurses
  • in a non-face-to-face setting (e.g. by telehealth).

A designated member of the team should document the agreed survivorship care plan. The survivorship care plan should support wellness and have a strong emphasis on healthy lifestyle changes such as a balanced diet, a non-sedentary lifestyle, weight management and a mix of aerobic and resistance exercise (COSA 2018; Hayes et al. 2019; Head and Neck Guideline Steering Committee 2020).

This survivorship care plan should also cover, but is not limited to:

  • what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
  • model of post-treatment care, the health professional providing care and where it will be delivered
  • care plans from other health providers to manage the consequences of cancer and cancer treatment
  • wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
  • rehabilitation recommendations
  • available support services
  • a process for rapid re-entry to specialist medical services for suspected recurrence.

Survivors generally need regular follow-up, often for five or more years after cancer treatment finishes. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical and psychosocial status and needs.

Processes for rapid re-entry to hospital care should be documented and communicated to the patient and relevant stakeholders.

Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing late effects of treatment and psychological issues) as well as individual clinical and supportive care needs. It is important that post-treatment care is based on evidence and is consistent with guidelines. Not all people will require ongoing tests or clinical review and may be discharged to general practice follow-up.

The lead clinician should discuss (and general practitioner reinforce) options for follow-up at the start and end of treatment. It is critical for optimal aftercare that the designated member of the treatment team educates the patient about the symptoms of recurrence.

General practitioners (including nurses) can:

  • connect patients to local community services and programs
  • manage long-term and late effects
  • manage comorbidities
  • provide wellbeing information and advice to promote self-management
  • screen for cancer and non-cancerous conditions.
More information

Templates and other resources to help with developing treatment summaries and survivorship care plans are available from these organisations:

  • American Cancer Society head and neck cancer survivorship care guideline
  • Australian Cancer Survivorship Centre
  • Cancer Australia – Principles of Cancer Survivorship
  • Cancer Council Australia and states and territories
  • Clinical Oncology Society of Australia – Model of Survivorship Care
  • eviQ – Cancer survivorship: introductory course
  • MyCarePlan.org.au
  • South Australian Cancer Service – Statewide Survivorship Framework resources
  • American Society of Clinical Oncology – guidelines.

Not smoking, eating a healthy diet, being sun smart, avoiding or limiting alcohol intake, being physically active and maintaining a healthy body weight may help reduce the risk of primary recurrence or a second primary cancer.

Encourage and support all cancer survivors to reduce modifiable risk factors for recurrence as well as other chronic diseases. Ongoing coordination of care between providers should also deal with any comorbidities, particularly ongoing complex and life-threatening comorbid conditions.

Support cancer survivors to participate in research or clinical trials where they are available and appropriate. These might include studies to understand survivors’ issues, to better manage treatment side effects, or to improve models of care and quality of life.

For more information visit the Cancer Australia website.

See validated screening tools mentioned in Principle 4 ‘Supportive care’. Additionally, the ‘Cancer Survivors Unmet Needs (CaSun)’ is another validated screening tool that may help health professionals to identify the unmet needs of patients during survivorship.

A number of specific challenges and needs may arise for cancer survivors:

  • lymphoedema – referral to a trained lymphoedema practitioner may be needed
  • advice for ongoing oral health maintenance by a dentist with experience in head and neck cancer
  • speech pathologist management for:
  • assessing and managing communication and swallowing problems, particularly when a risk of aspiration is identified
  • patients who have undergone a laryngectomy or who have a permanent tracheostomy, to maximise communication, humidification/airway management and swallowing outcomes (referral to a physiotherapist with expertise in the respiratory management may also benefit)
  • dietitian management for patients requiring oral nutrition support or who are fed via gastrostomy or via a nasogastric tube
  • physiotherapy for ongoing musculoskeletal pain and dysfunction at the neck, shoulder and temporomandibular joint (Head and Neck Cancer Guideline Steering Committee 2020)
  • speech pathology to manage and maximise any communication impairments, an occupational therapist or psychologist for social skills training and/or a social worker for family liaison to help reduce psychosocial difficulties (difficulty with communication and social interactions is relatively common for patients with head and neck cancer and can place the patient at high risk of depression)
  • referral to one or more appropriate disciplines (e.g. social work, psychology service, financial advisor) for longer than expected time to return to work or previous level of functioning (Morales et al. 2020)
  • accurate information about HPV aetiology and future transmission risks – some patients may benefit from referral for psychosexual support
  • require referral to the appropriate discipline (e.g. social work, speech pathology, dietetics or nursing) for further assessment and identification of appropriate funding support (additional costs related to managing ongoing impairments, such as communication devices, enteral feeding and chronic wound management)
  • referral for financial and employment issues (e.g. loss of income and assistance with returning to work, and the cost of treatment, travel and accommodation)
  • appointing a substitute decision-maker and completing an advance care directive
  • legal issues such as completing a will.

For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.

Rehabilitation may be required at any point of the care pathway from the pre-treatment phase through to disease-free survival and palliative care (Cormie et al. 2017).

Issues that may need to be dealt with include managing cancer-related fatigue, coping with cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to study or work and ongoing adjustment to cancer and its sequels.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

Cancer survivors may find referral to specific cancer rehabilitation, optimisation programs or community-based rehabilitation appropriate and beneficial. Other options include referral to allied health supports through team care arrangements and mental health plans. Some community support organisations (cancer-related non-government, not-for-profit and charities) provide services to cancer survivors.

The lead clinician (themselves or by delegation) should take responsibility for these tasks:

  • explaining the model of post-treatment care and the roles of health professionals involved in post-treatment care including the role of general practice
  • explaining the treatment summary and follow-up care plan
  • discussing the development of a shared follow-up and survivorship care plan where a model of shared follow-up care has been agreed
  • discussing how to manage any of the physical, psychological or emotional issues identified
  • providing information on the signs and symptoms of recurrent disease
  • providing a survivorship care plan with information on secondary prevention and healthy living
  • providing contact details of the care team involved
  • providing clear information about the role and benefits of palliative care and advance care planning.

The lead clinician should ensure regular, timely, two-way communication with the general practitioner about:

  • the patient’s progress
  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • any shared care arrangements
  • clarification of various roles in patient care
  • a process for rapid re-entry to medical services for patients with suspected recurrence or if there are other concerns.
More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Patients who present with recurrent, residual or metastatic disease should be managed by a multidisciplinary team and offered timely referral to appropriate physical, practical and emotional support.

Step 6 is concerned with managing recurrent or local residual and metastatic disease. The likelihood of recurrence depends on many factors usually related to the type of cancer, the stage of cancer at presentation and the effectiveness of treatment. Some cancers cannot be eradicated even with the best initial treatment. But controlling disease and disease-related symptoms is often possible, depending on the clinical situation.

Signs or symptoms of recurrent, residual or metastatic disease will depend on the type of cancer initially diagnosed and the treatment delivered. Most cases of recurrent head and neck cancers will be detected at routine follow-up or by the patient presenting with symptoms before routine clinical follow-up.

Symptoms can present as those previously outlined in section 2.1. For patients treated with surgery, signs of residual disease may also include the tumour invading vital structures that cannot be resected or pathological examination identifying extensive involved margins. For patients treated with (chemo)radiation therapy, signs of residual disease may include a clinically apparent tumour that increases in size during treatment or has not fully resolved within the timeframe expected for the specific tumour type. Diagnostic imaging evidence of residual disease on post-treatment scans may also be apparent. FDG-PET is particularly useful in assessing this.

Any recurrence of the symptoms that a patient initially presented with or new symptoms (outlined in section 2.1) in the treated region should be thoroughly investigated as clinically indicated. Less commonly, the team providing surveillance in the post-treatment period may detect asymptomatic recurrence, often as a progressive mass or mucosal changes. Any new or unexplained clinical finding related to the treated area should be investigated as clinically indicated to determine if recurrent disease is present, especially when the potential to deliver additional treatment with curative intent exists.

Some patients will have metastatic disease on initial presentation. Symptoms can present as those previously outlined in section 2.1.

Access to the best available therapies, including clinical trials, as well as treatment overseen by a multidisciplinary team, are crucial to achieving the best outcomes for anyone with metastatic disease.

Managing metastatic disease is complex and should therefore involve all the appropriate specialties in a multidisciplinary team including palliative care. From the time of diagnosis, the team should offer patients appropriate psychosocial care, supportive care, advance care planning and symptom-related interventions as part of their routine care. The approach should be personalised to meet the patient’s individual needs, values and preferences. The full complement of supportive care measures as described throughout the optimal care pathway and in Appendices A, B and C should be offered to assist patients and their families and carers to cope. These measures should be updated as the patient’s circumstances change.

Survivorship should be considered and offered at an early stage. Many people live with advanced cancer for many months or years. As survival is improving in many patients, survivorship issues should be considered as part of routine care. Health professionals should therefore be ready to change and adapt treatment strategies according to disease status, the treatment’s adverse effects and the patient’s quality of life, in addition to the patient’s priorities and life plans.

If there is an indication that a patient’s cancer has returned, care should be provided under the guidance of a treating specialist. Each patient should be evaluated to determine if referral to the original multidisciplinary team is necessary. Often referral back to the original multidisciplinary team will not be necessary unless there are obvious aspects of care involving different therapeutic and supportive care disciplines not otherwise accessible. The multidisciplinary team may include new members such as palliative care specialists.

Treatment will depend on the location, extent of recurrent or residual disease, previous management and the patient’s preferences.

In managing people with head and neck cancer, treatment may include these options:

  • surgery
  • radiation therapy
  • chemotherapy
  • immunotherapy and biological therapies
  • palliative and support care.

The potential goals of treatment should be discussed, respecting the patient’s cultural values. Wherever possible, written information should be provided.

Encourage early referral to clinical trials or accepting an invitation to participate in research.

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced disease. Patients should be encouraged to think and talk about their healthcare values and preferences with family or carers, appoint a substitute decision-maker and consider developing an advance care directive to convey their preferences for future health care in the event they become unable to communicate their wishes (AHMAC 2011).

More information

Refer to section 4.3 ‘More information’ for links to resources.

Refer patients and carers to Advance Care Planning Australia or to the Advance Care Planning National Phone Advisory Service on 1300 208 582.

Early referral to palliative care can improve the quality of life for people with cancer and in some cases may be associated with survival benefits (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). The treatment team should emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers. Refer to section 4.3 ‘More information’ for more detailed information.

The lead clinician should ensure timely and appropriate referral to palliative care services. Referral to palliative care services should be based on the patient’s need and potential for benefit, not prognosis.

More information

 

Refer to the end of section 4.3 ‘Palliative care’ for links to resources.

The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For more information visit the Cancer Australia website.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise at this time for patients:

  • assistance for dealing with emotional and psychological distress resulting from fear of death or dying, existential concerns, anticipatory grief, communicating wishes to loved ones, interpersonal problems and sexuality concerns
  • potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment
  • cognitive changes as a result of treatment and disease progression such as altered memory, attention and concentration (a patient may appoint someone to make medical, financial and legal decisions on their behalf – a substitute decision-maker – before and in case they experience cognitive decline)
  • referral to a speech pathologist to manage and maximise any communication impairments and an occupational therapist or psychologist for social skills training to reduce psychosocial difficulties (difficulty with social interactions can place the patient at higher risk of depression, which is relatively common for patients with head and neck cancer)
  • speech pathology for:
  • communication and swallowing difficulties, which may occur in the presence of residual, recurrent or metastatic disease – it is important to consider the patient’s overall prognosis and quality of life in managing these (e.g. the benefit of oral feeding irrespective of aspiration risk)
  • people who have undergone a laryngectomy or a tracheostomy to maximise communication, humidification/airway management and swallowing outcomes – a referral to a physiotherapist with expertise in respiratory management may also benefit (e.g. for advice regarding daily sputum production, coughing and forced expectoration)
  • referral to a dietitian for early nutrition intervention using a validated malnutrition screening tool such as the MST (malnutrition can occur as a result of disease or treatment)
  • enteral nutrition for certain patients with residual, recurrent or metastatic disease, although consideration of the patient’s overall prognosis and quality of life should be considered
  • referral to the appropriate discipline (e.g. social work, speech pathology, dietetics or nursing) for further assessment and identification of appropriate funding support (additional costs related to managing ongoing impairments, such as communication devices, enteral feeding and chronic wound management)
  • decline in mobility or functional status as a result of recurrent disease and treatments (referral to physiotherapy or occupational therapy may be required)
  • coping with hair loss and changes in physical appearance (refer to the Look Good, Feel Betterprogram – see ’Resource List’)
  • appointing a substitute decision-maker and completing an advance care directive
  • financial issues as a result of disease recurrence such as gaining early access to superannuation and insurance
  • legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Rehabilitation may be required at any point of the metastatic care pathway, from preparing for treatment through to palliative care. Issues that may need to be dealt with include managing cancer-related fatigue, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to cancer and its sequels.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

The lead clinician should ensure there is adequate discussion with patients and carers about the diagnosis and recommended treatment, including treatment intent and possible outcomes, likely adverse effects and the supportive care options available.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.

Step 7 is concerned with maintaining the patient’s quality of life and meeting their health and supportive care needs as they approach the end of life, as well as the needs of their family and carers.

Some patients with advanced cancer will reach a time when active treatment is no longer appropriate. The team needs to share the principles of a palliative approach to care when making decisions with the patient and their family or carer. End-of-life care is appropriate when the patient’s symptoms are increasing and functional status is declining.

If the treatment team does not include a palliative care member, the lead clinician should consider referring the patient to palliative care services, with the general practitioner’s engagement. This may include inpatient palliative unit access (as required).

The multidisciplinary team may consider seeking additional expertise from these professionals:

  • clinical psychologist
  • clinical nurse specialist or practitioner
  • social worker
  • palliative medicine specialist
  • pain specialist
  • pastoral or spiritual carer
  • bereavement counsellor
  • music therapist
  • art therapist
  • cultural expert
  • Canteen for children of parents with cancer.

The team might also recommend that patients access these services:

  • home and community-based care
  • specialist community palliative care workers
  • community nursing.

If the patient does not already have an advance care directive in place, a designated member of the treatment team should encourage them to develop one in collaboration with their family or carer (AHMAC 2011).

It is essential for the treatment team to consider the appropriate place of care, the patient’s preferred place of death and the support needed for the patient, their family and carers.

The treatment team should also ensure that carers and families receive the information, support and guidance about their role according to their needs and wishes (Palliative Care Australia 2018).

More information

The treatment team can refer patients and carers to these resources:

Clinical trials may help improve palliative care and in managing a patient’s symptoms of advanced cancer (Cancer Council Victoria 2019). The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For more information visit the Cancer Australia website. See ’Resource list’ for additional clinical trial databases.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with emotional and psychological distress from anticipatory grief, fear of death or dying, anxiety/depression and interpersonal problems
  • communication difficulties
  • management of physical symptoms including pain, dysphagia, fungating wounds, malnutrition and lethargy
  • bleeding, which may be catastrophic (specialist interventional radiologist assessment should be considered)
  • support for upper airway obstruction
  • speech pathology management of swallowing difficulties
  • management from dietitians with expertise in feeding via gastrostomy or a nasogastric tube
  • decline in mobility or functional status, affecting the patient’s discharge destination (a referral to physiotherapy, exercise physiology, occupational therapy or social work may be needed)
  • specific support for families where a parent is dying and will leave behind bereaved children or adolescents, creating special family needs
  • appointing a substitute decision-maker and completing an advance care directive
  • legal issues (completing a will, care of dependent children) and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability
  • arranging a funeral.

These services and resources can help:

  • referral to 13 11 20 for Cancer Council Australia’s Pro Bono Program for free legal, financial, small business accounting and workplace assistance (subject to a means test)
  • Sad news sorry business (Queensland Health 2015) for the specific needs of Aboriginal and Torres Strait Islander people.

For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.

The lead clinician is responsible for:

  • being open to and encouraging discussion with the patient about the expected disease course, considering the patient’s personal and cultural beliefs and expectations
  • discussing palliative care options, including inpatient and community-based services as well as dying at home and subsequent arrangements
  • providing the patient and carer with the contact details of a palliative care service
  • referring the patient to palliative care in the community according to the carer’s wishes.

The lead clinician should discuss end-of-life care planning to ensure the patient’s needs and goals are met in the appropriate environment. The patient’s general practitioner should be kept fully informed and involved in major developments in the patient’s illness path.

More information

For support with communication skills and training programs, see these sources:

The burden of cancer is not evenly spread across Australia. People experiencing socioeconomic disadvantage, Aboriginal and Torres Strait Islander communities, culturally diverse communities, people living with a disability, people with chronic mental health or psychiatric concerns and those who live in regional and rural areas of Australia have poorer cancer outcomes.

Cancer is the third leading cause of burden of disease for Aboriginal and Torres Strait Islander people. While Australia’s cancer survival rates are among the best in the world, Aboriginal and Torres Strait Islander people continue to experience a different pattern of cancer incidence and significant disparities in cancer outcomes compared with non-Indigenous Australians.

For Aboriginal and Torres Strait Islander people, health and connection to land, culture, community and identity are intrinsically linked. Health encompasses a whole-of-life view and includes a cyclical concept of life–death–life.

The distinct epidemiology of cancer among Aboriginal and Torres Strait Islander people, and unique connection to culture, highlight the need for a specific optimal care pathway for Aboriginal and Torres Strait Islander people with cancer. Ensuring this pathway is culturally safe and supportive is vital to tackling the disparities for Aboriginal and Torres Strait Islander people.

Published in 2018, the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer provides guidance to health practitioners and service planners on optimal care for Aboriginal and Torres Strait Islander people with cancer across the cancer continuum.

In addition to the key principles underpinning cancer-specific pathways, these are the key concepts that are fundamental to Aboriginal and Torres Strait Islander health:

  • providing a holistic approach to health and wellbeing
  • providing a culturally appropriate and culturally safe service
  • acknowledging the diversity of Aboriginal and Torres Strait Islander peoples
  • understanding the social determinants and cultural determinants of health (Cancer Australia 2015).

To view the Optimal care pathway for Aboriginal and Torres Strait Islander people with cancer, visit the Cancer Australia website. To view the consumer resources – Checking for cancer and Cancer, visit the Cancer Australia website.

For people from culturally diverse backgrounds in Australia, a cancer diagnosis can come with additional complexities, particularly when English proficiency is poor. In many languages there is not a direct translation of the word ‘cancer’, which can make communicating vital information difficult. Perceptions of cancer and related issues can differ greatly in people from culturally diverse backgrounds and this can affect their understanding and decision making after a cancer diagnosis. In addition to different cultural beliefs, when English language is limited there is potential for miscommunication of important information and advice, which can lead to increased stress and anxiety for patients.

A professionally trained interpreter (not a family member or friend) should be made available when communicating with people with limited English proficiency. Navigation of the Australian healthcare system can pose problems for those with a non-Anglo culture, and members of the treatment teams should pay particular attention to supporting these patients.

The Australian Cancer Survivorship Centre has developed a glossary of more than 700 cancer terms in nine different languages. The multilingual glossary has been designed as a resource for professional translators, interpreters and bilingual health professionals working in the cancer field. The glossary is a unique tool that enables language professionals with access to accurate, consistent and culturally appropriate terminology.

Visit the Peter Mac website to see the glossary.

Disability, which can be physical, intellectual or psychological, may have existed before the cancer diagnosis or may be new in onset (occurring due to the cancer treatment or incidentally). Adjusting to life with a disability adds another challenge to cancer care and survivorship.

Several barriers prevent people with disabilities from accessing timely and effective health care (AIHW 2017):

  • physical limitations
  • competing health needs
  • the trauma of undergoing invasive procedures
  • potential barriers associated with obtaining informed consent
  • failure to provide assistance with communication
  • lack of information
  • discriminatory attitudes among healthcare staff.

In caring for people with disabilities and a cancer diagnosis, the Australian Institute of Health and Welfare disability flag should be used at the point of admittance to correctly identify and meet the additional requirements of a person with disability. Facilities should actively consider access requirements, and health practitioners should make reasonable adjustments where required.

Patients aged between seven and 65 years who have a permanent or significant disability may be eligible for support or funding through the National Disability Insurance Scheme (National Disability Insurance Agency 2018). More information can be found on the NDIS website.

Patients aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people) may be eligible for subsidised support and services through aged care services. An application to determine eligibility can be completed online over the phone. More information can be found at the My Aged Care website.

More information

‘Talking End of Life’ is a resource that shows how to teach people with intellectual disability about end of life. It is designed for disability support workers but is also helpful for others including families, health professionals and educators.

To view the resource, visit the Talking End of Life website.

Planning and delivering appropriate cancer care for older people can present a number of challenges. This could also be true for frail people or those experiencing comorbidities. Effective communication between oncology and geriatrics departments will help facilitate best practice care, which takes into account physiological age, complex comorbidities, risk of adverse events and drug interactions, as well as the implications of cognitive impairment on suitability of treatment and consent (Steer et al. 2009).

At a national interdisciplinary workshop convened by the Clinical Oncology Society of Australia, it was recommended that people over the age of 70 undergo some form of geriatric assessment, in line with international guidelines (COSA 2013; palliAGED 2018). Screening tools can be used to identify those patients in need of a comprehensive geriatric assessment (Decoster et al. 2015). This assessment can be used to help determine life expectancy and treatment tolerance and guide appropriate referral for multidisciplinary intervention that may improve outcomes (Wildiers et al. 2014).

Frailty is not captured through traditional measures of performance status (e.g. ECOG) and includes assessment in the domains of:

  • function
  • comorbidity
  • presence of geriatric syndromes
  • nutrition
  • polypharmacy
  • cognition
  • emotional status
  • social supports.

In recent years, adolescent and young adult oncology has emerged as a distinct field due to lack of progress in survival and quality-of-life outcomes (Ferrari et al. 2010; Smith et al. 2013). The significant developmental change that occurs during this life stage complicates a diagnosis of cancer, often leading to unique physical, social and emotional effects for young people at the time of diagnosis and throughout the cancer journey (Smith et al. 2012).

In caring for young people with cancer, akin to the comorbidities that require specific care in the older cancer population, the treatment team needs to pay careful attention to promoting normal development (COSA 2014). This requires personalised assessments and management involving a multidisciplinary, disease-specific, developmentally targeted approach that adheres to the following principles:

  • understanding the developmental stages of adolescence and supporting normal adolescent health and development alongside cancer management
  • understanding and supporting the rights of young people
  • communication skills and information delivery that are appropriate to the young person
  • meeting the needs of all involved, including the young person, their carers and their family
  • working with educational institutions and workplaces
  • considering survivorship and palliative care needs.

An oncology team caring for an adolescent or young adult with cancer should be able to demonstrate these specific areas of expertise:

  • be able to ensure access to expert adolescent and young adult health providers who have knowledge specific to the biomedical and psychosocial needs of the population
  • understand the biology and current management of the disease in the adolescent and young adult age group
  • consider participating in research and clinical trials for each patient
  • engage in proactive discussion and management of fertility preservation, late effects of treatment, ongoing need for contraception, and psychosocial and psychosexual needs
  • provide treatment in an environment that is friendly to adolescents and young adults.

In general, people from lower socioeconomic groups are at greater risk of poor health, have higher rates of illness, disability and death, and live shorter lives than those from higher socioeconomic groups (AIHW 2016). People experiencing socioeconomic disadvantage are less likely to participate in screening programs, more likely to be obese, less likely to exercise and much more likely to smoke, which are all risk factors for cancer. In 2010–2014 age-standardised cancer incidence rates were higher in the lowest socioeconomic areas compared with the highest socioeconomic areas for all cancers combined (Cancer Australia 2019c).

Socioeconomic status and low health literacy are closely correlated. Therefore, effective communication with patients and carers is particularly important given the prevalence of low health literacy in Australia (estimated at 60 per cent of Australian adults) (ACSQHC 2014).

Consideration should be taken for cancer patients experiencing socioeconomic disadvantage to reduce their risk of being underserved for health care.

A diagnosis of cancer may present additional challenges to people who have pre-existing chronic mental health or psychiatric concerns, resulting in exacerbation of their mental health symptoms. This may include heightened anxiety, worsening depression or thoughts of self-harm.

As poor adjustment and coping can affect treatment decisions, people who are known to have a mental health diagnosis need psychosocial assessment in the oncology setting to formulate a plan for ongoing support throughout treatment.

Psychosocial support can assist with challenges in communicating with health professionals, enhance understanding of the treatment journey, ensure capacity for consent to treatment options and improve compliance with treatment requests. A referral for psychosocial support from a health professional to the psycho-oncology team can ensure these patients are provided with targeted interventions or referrals to community-based services that may mitigate problems associated with the impacts of social isolation that frequently accompany chronic mental ill-health.

Many patients with chronic mental health problems may be well known to external service providers. Psycho-oncology health professionals can form meaningful partnerships with existing service providers to optimise patient care throughout treatment and beyond.

Drug use disorders fall within the area of mental health conditions. People who are opiate dependent may have specific and individual requirements regarding pain management and their own preference for type of opiate prescribed or used.

People who identify as sexually or gender diverse may have unique needs following a cancer diagnosis. Sexually or gender diverse identities include (but are not limited to) people who identify as lesbian, gay, bisexual or transgender, collectively ‘LGBT’. There is no universally agreed upon initialism to describe this community, with other terms such as queer/questioning (Q), intersex (I), asexual (A) and pansexual (P) often included, as well as a plus symbol (+) indicating inclusivity of other identities not explicitly mentioned.

Sexual orientation and gender identity are relevant across the entire spectrum of cancer care, from prevention to survivorship and end-of-life care. LGBT people are less likely to participate in cancer screening, and some segments of the LGBT community exhibit elevated rates of specific cancer risk factors – for example, higher rates of smoking and alcohol use. Regarding treatment, there may be unique factors relevant to LGBT people that may affect decision making. Additionally, the LGBT population experiences higher rates of anxiety, depression and stressful life circumstances, and may be at risk of inferior psychosocial outcomes following a cancer diagnosis. LGBT people are also more likely to be estranged from their families of origin, and for older people, less likely to have adult children who may provide support and care.

Barriers to care for LGBT people include past negative interactions with healthcare systems, experiences or fear of discrimination and harassment in healthcare settings, assumptions of cisgender/heterosexual identity, lack of recognition or exclusion of same-sex partners from care, and a lack of relevant supportive care and information resources.

To provide safe and appropriate care for LGBT people with cancer, healthcare providers should:

  • display environmental cues to show an inclusive and safe setting for LGBT patients
  • avoid assumptions about the sexual orientation or gender identity of patients and their partners
  • facilitate positive disclosure of sexual orientation or gender identity
  • include same-sex/gender partners and families of choice in care
  • be aware of relevant supportive care and information resources
  • provide non-judgemental, patient-centred care.

Supportive care in cancer refers to the following five domains:

  • the physical domain, which includes a wide range of physical symptoms that may be acute, relatively short lived or ongoing, requiring continuing interventions or rehabilitation
  • the psychological domain, which includes a range of issues related to the patient’s mental health wellbeing and personal relationships
  • the social domain, which includes a range of social and practical issues that will affect the patient, carer and family such as the need for emotional support, maintaining social networks and financial concerns
  • the information domain, which includes access to information about cancer and its treatment, recovery and survivorship support services and the health system overall
  • the spiritual domain, which focuses on the patient’s changing sense of self and challenges to their underlying beliefs and existential concerns (Palliative Care Victoria 2019).

Fitch’s (2000) model of supportive care recognises the variety and level of intervention required at each critical point as well as the need to be specific to the individual patient. The model targets the type and level of intervention required to meet patients’ supportive care needs.

Fitch’s tiered approach to supportive care

Consider a referral to a psychologist, psychiatrist, pastoral/spiritual care practitioner, social worker, specialist nurse or a relevant community-based program if the patient has these issues:

  • displaying emotional cues such as tearfulness, distress that requires specialist intervention, avoidance or withdrawal
  • being preoccupied with or dwelling on thoughts about cancer and death
  • displaying fears about the treatment process or the changed goals of their treatment
  • displaying excessive fears about cancer progression or recurrence
  • worrying about loss associated with their daily function, dependence on others and loss of dignity
  • becoming isolated from family and friends and withdrawing from company and activities that they previously enjoyed
  • feeling hopeless and helpless about the effect that cancer is having on their life and the disruption to their life plans
  • struggling to communicate with family and loved ones about the implications of their cancer diagnosis and treatment
  • managing physical changes and body image concerns
  • experiencing changes in sexual intimacy, libido and function
  • struggling with the diagnosis of metastatic or advanced disease
  • having difficulties quitting smoking (refer to Quitline on 13 7848) or with other drug and alcohol use
  • having difficulties transitioning to palliative care.

Additional considerations that may arise for the multidisciplinary team include:

  • support for the carer – encourage referrals to psychosocial support from a social worker, psychologist or general practitioner
  • referral to an exercise physiologist or physiotherapist as a therapeutic approach to prevent and manage psychological health
  • dietetic support to assist in managing changes in appetite and optimise nutritional status for cognition, body image and mood
  • referral to wellness-after-cancer programs to provide support, information and offer strategies.

Complementary therapies may be used together with conventional medical treatments to support and enhance quality of life and wellbeing. They do not aim to cure the patient’s cancer. Instead, they are used to help control symptoms such as pain and fatigue (Cancer Council Australia 2019).

The lead clinician or health professional involved in the patient’s care should discuss the patient’s use (or intended use) of complementary therapies not prescribed by the multidisciplinary team to assess safety and efficacy and to identify any potential toxicity or drug interactions.

The lead clinician should seek a comprehensive list of all complementary and alternative medicines being taken and explore the patient’s reason for using these therapies and the evidence base. A transparent and honest discussion that is free from judgement should be encouraged.

While some complementary therapies are supported by strong evidence, others are not. For such therapies, the lead clinician should discuss their potential benefits and use them alongside conventional therapies (NHMRC 2014).

If the patient expresses an interest in using complementary therapies, the lead clinician should consider referring patients to health providers within the multidisciplinary team who have expertise in the field of complementary and alternative therapies (e.g. a clinical pharmacist, dietitian or psychologist) to assist them to reach an informed decision. Costs of such approaches should be part of the discussion with the patient and considered in the context of evidence of benefit.

The lead clinician should assure patients who use complementary therapies that they can still access a multidisciplinary team review and encourage full disclosure about therapies being used.

More information

Advance Care Planning Australia

Advance Care Planning Australia provides national advance care planning resources for individuals, families, health professional and service providers. Resources include a national advisory service, information resources, a legal forms hub and education modules.

Australian Cancer Survivorship Centre

The Australian Cancer Survivorship Centre has developed information resources and events to help people move from initial treatment to post treatment and beyond, including those receiving maintenance treatments. While they do not provide clinical advice, they connect with a range of providers to enable improved care.

  • Telephone: (03) 8559 6220
  • Website

Australian Commission on Safety and Quality in Health Care

The Australian Commission on Safety and Quality in Health Care has developed a resource for patients and carers explaining the coordination of care that patients should receive from their health service during cancer treatment. The resource is called What to expect when receiving medication for cancer care.

Beyond Blue

Beyond Blue provides information about depression, anxiety and related disorders, as well as about available treatment and support services.

Cancer Australia

Cancer Australia provides information for consumers, carers and their families including printed resources and video content.

Cancer Council’s Cancer Information and Support Service

Cancer Council 13 11 20 is a confidential telephone support service available to anyone affected by cancer. This service acts as a gateway to evidence-based documented, practical and emotional support available through Cancer Council services and other community organisations. Calls will be answered by a nurse or other oncology professional who can provide information relevant to a patient’s or carer’s situation. Health professionals can also access this service.

  • Telephone: 13 11 20 – Monday to Friday, 9.00am to 5.00pm (some states have extended hours)
  • Website

Cancer Council’s Cancer Connect

Cancer Connect is a free and confidential telephone peer support service that connects someone who has cancer with a specially trained volunteer who has had a similar cancer experience.

A Connect volunteer can listen with understanding and share their experiences and ways of coping. They can provide practical information, emotional support and hope. Many people newly diagnosed with cancer find this one-to-one support very beneficial.

For more information on Cancer Connect call Cancer Council 13 11 20.

Canteen

Canteen helps adolescents, young adults and parents to cope with cancer in their family. Canteen offers individual support services, peer support services and a youth cancer service, as well as books, resources and useful links.

  • Telephone: 1800 835 932 to talk to a health professional about information and support for young people or 1800 226 833 for other enquiries
  • Website

Clinical trial information

For a collection of clinical trials available in Australia see the following sources of information:

CanEAT pathway

A guide to optimal cancer nutrition for people with cancer, carers and health professionals.

Guides to best cancer care

The short guides help patients, carers and families understand the optimal cancer care that should be provided at each step. They include optimal timeframes within which tests or procedures should be completed, prompt lists to support patients to understand what might happen at each step of their cancer journey and to consider what questions to ask, and provide information to help patients and carers communicate with health professionals.

The guides are located on an interactive web portal, with downloadable PDFs available in multiple languages.

Head and Neck Cancer Australia

Head and Neck Cancer Australia is a not-for-profit organisation, supporting patients with head and neck cancer, caregivers, family and health professionals.

Look good, feel better

A free national community service program, run by the Cancer Patients Foundation, dedicated to teaching cancer patients how to manage the appearance-related side effects caused by treatment for any type of cancer.

Quitline

Quitline is a confidential, evidence-based telephone counselling service. Highly trained Quitline counsellors use behaviour change techniques and motivational interviewing over multiple calls to help people plan, make and sustain a quit attempt.

Quitline is a culturally inclusive service for all, and Aboriginal counsellors are also available. Health professionals can refer patients to Quitline online or via fax.

  • Telephone: 13 7848
  • Website or the relevant website in your state or territory.

Australian Cancer Survivorship Centre

The Australian Cancer Survivorship Centre provides expertise in survivorship care, information, support and education. Its purpose is to support and enable optimal survivorship care.

  • Telephone: (03) 8559 6220
  • Website

Australian Commission on Safety and Quality in Health Care

The Australian Commission on Safety and Quality in Health Care has developed a guide for clinicians containing evidence-based strategies to support clinicians to understand and fulfil their responsibilities to cancer patients. This guide is particularly relevant to Steps 3 to 6 of the optimal care pathway. The guide is titled NSQHS Standards user guide for medication management in cancer care for clinicians.

Australia and New Zealand Head and Neck Cancer Society

The Australia and New Zealand Head and Neck Cancer Society provides a list of institutions in Australia with local multidisciplinary teams comprising head and neck cancer specialists.

Cancer Australia

Information for health providers including guidelines, cancer learnings, cancer guides, reports, resources, videos, posters and pamphlets.

Cancer Council Australia

Information on prevention, research, treatment and support provided by Australia’s peak independent cancer authority.

CanEAT pathway

A guide to optimal cancer nutrition for people with cancer, carers and health professionals.

eviQ

A clinical information resource providing health professionals with current evidence-based, peer-maintained, best practice cancer treatment protocols and information relevant to the Australian clinical environment.

National Health and Medical Research Council

Information on clinical practice guidelines, cancer prevention and treatment.

Advance care directive – voluntary person-led document that focus on an individual’s values and preferences for future health and medical treatment decisions, preferred outcomes and care. They are completed and signed by a competent person. They are recognised by specific legislation (statutory) or common law (non-statutory). Advance care directives can also appoint the substitute decision-maker(s) who can make decisions about health or personal care on the individual’s behalf if they are no longer able to make decisions themselves. Advance care directives focus on the future health care of a person, not on the management of his or her assets. They come into effect when an individual loses decision-making capacity.

Advance care planning – the process of planning for future health and personal care, where the person’s values, beliefs and preferences are made known so they can guide decision making at a future time when that person cannot make or communicate their decisions.

Alternative therapies – treatments used in place of conventional medical treatment.

Care coordinator – the health provider nominated by the multidisciplinary team to coordinate patient care. The care coordinator may change over time depending on the patient’s stage in the care pathway and the location and care in which care is being delivered.

Castrate resistant progressive disease – progressive disease despite castrate levels of testosterone (Cancer Council Australia Advanced Prostate Cancer Guidelines Working Party 2010).

Complementary therapies – supportive treatment used in conjunction with conventional medical treatment. These treatments may improve wellbeing and quality of life and help people deal with the side effects of cancer.

End-of-life care – includes physical, spiritual and psychosocial assessment, and care and treatment, delivered by health professionals and ancillary staff. It also includes support of families and carers and care of the patient’s body after their death.

Immunotherapy – a type of cancer treatment that helps the body’s immune system to fight cancer. Immunotherapy can boost the immune system to work better against cancer or remove barriers to the immune system attacking the cancer.

Indicator – a documentable or measurable piece of information regarding a recommendation in the optimal care pathway.

Informed financial consent – the provision of cost information to patients, including notification of likely out-of-pocket expenses (gaps), by all relevant service providers, preferably in writing, before admission to hospital or treatment (Commonwealth Department of Health 2017).

Lead clinician – the clinician who is nominated as being responsible for individual patient care. The lead clinician may change over time depending on the stage of the care pathway and where care is being provided.

Metastatic disease – cancer that has spread from the part of the body where it started (the primary site) to other parts of the body.

Multidisciplinary care – an integrated team approach to health care in which medical and allied health providers consider all relevant treatment options and collaboratively develop an individual treatment plan for each patient.

Multidisciplinary team – comprises the core disciplines that are integral to providing good care. The team is flexible in approach, reflects the patient’s clinical and psychosocial needs and has processes to facilitate good communication.

Multidisciplinary team meeting – a meeting of health professionals from one or more clinical disciplines who together make decisions about recommended treatment of patients.

Optimal care pathway – the key principles and practices required at each stage of the care pathway to guide the delivery of consistent, safe, high-quality and evidence-based care for all people affected by cancer.

Palliative care – any form of medical care or treatment that concentrates on reducing the severity of disease symptoms.

Patient management frameworks – tumour stream models adopted in Victoria in 2003 to reduce variation in cancer care. The optimal care pathways are updated versions of these models.

Performance status – an objective measure of how well a patient can carry out activities of daily life.

Prehabilitation – one or more interventions performed in a newly diagnosed cancer patient that are designed to improve physical and mental health outcomes as the patient undergoes treatment and beyond.

Primary care health professional – in most cases this is a general practitioner but may also include general practice nurses, community nurses, nurse practitioners, allied health professionals, midwives, pharmacists, dentists and Aboriginal health workers.

Primary specialist – the person who makes the referral to the multidisciplinary team (such as specialist physician, surgeon, oncologist, palliative care specialist). This person will also make referrals for treatment and will be responsible for overseeing follow-up care.

PSMA PET/CT – a whole body scan that images prostate cancer wherever it is located in the body.

Rehabilitation – comprises multidisciplinary efforts to allow the patient to achieve optimal physical, social, physiological and vocational functioning within the limits imposed by the disease and its treatment.

Spiritual care – the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.

Substitute decision-maker – a person permitted under the law to make decisions on behalf of someone who does not have competence or capacity.

Supportive care – care and support that aims to improve the quality of life of people living with cancer, cancer survivors and their family and carers and particular forms of care that supplement clinical treatment modalities.

Survivorship – an individual is considered a cancer survivor from the time of diagnosis, and throughout their life; the term includes individuals receiving initial or maintenance treatment, in recovery or in the post-treatment phase.

Survivorship care plan – a formal, written document that provides details of a person’s cancer diagnosis and treatment, potential late and long-term effects arising from the cancer and its treatment, recommended follow-up, surveillance, and strategies to remain well.

Targeted therapy – a medicine that blocks the growth and spread of cancer by interfering with specific molecules.

We acknowledge the Traditional Owners of Country throughout Australia and their continuing connection to the land, sea and community. We pay our respects to them and their cultures and to Elders past, present and emerging.

This work is available from the Cancer Council website.

First published in September 2015. This edition published in June 2021.

ISBN: 978-1-76096-151-0

Cancer Council Victoria and Department of Health and Human Services Victoria 2021, Optimal care pathway for people with head and neck cancer, 2nd edn, Cancer Council Victoria, Melbourne.

Enquiries about this publication can be sent to optimalcare.pathways@cancervic.org.au.

Our thanks to the following health professionals, consumer representatives, stakeholders and organisations consulted in developing this optimal care pathway.

Dr Andrew Coleman (Co-chair), Radiation Oncologist, Peter MacCallum Cancer Centre

Mr Stephen Tudge (Co-chair), ENT Head and Neck Surgeon, Alfred Health

Ms Lauren Atkins, Advanced Accredited Practising Dietitian, OnCore Nutrition

Associate Professor Sidney Davis, Radiation Oncologist, Alfred Health

Dr Jacqui Frowen, Clinical Lead Speech Pathologist, Peter MacCallum Cancer Centre

Associate Professor Hui Gan, Medical Oncologist, Olivia Newton-John Cancer and Wellness and Research Centre, Austin Health

Professor Robert Thomas, Special Advisor on Health, Professorial Fellow, The University of Melbourne

Dr Jonathan Tomaszewski, Radiation Oncologist, Ballarat Regional Integrated Cancer Centre

Professor David Wiesenfeld, Oral and Maxillofacial Surgeon, The Royal Melbourne Hospital; Hon. Clinical Professor, The University of Melbourne

Ms Julia Brancato, Project Coordinator, Optimal Care Pathways, Cancer Council Victoria

Associate Professor June Corry (Chair), Radiation Oncologist; Head of the Head and Neck Unit, Peter MacCallum Cancer Centre

Ms Hamlata Bhana, Social Worker, Head and Neck and Neurology Services, Peter MacCallum Cancer Centre

Associate Professor Jonathan Clark, Head and Neck Surgeon, The Chris O’Brien Lifehouse, Royal Prince Alfred Hospital

Dr Andrew Coleman, Radiation Oncologist, Peter MacCallum Cancer Centre

Associate Professor Hui Gan, Medical Oncologist, Olivia Newton-John Cancer and Wellness Centre, Austin Health

Mr Tim Iseli, Surgeon; Head of Unit, Department of Ear, Nose and Throat Surgery, The Royal Melbourne Hospital

Ms Jane Harrowfield, Senior Dietitian, Peter MacCallum Cancer Centre

Mr Stephen Kleid, Senior Head and Neck Surgeon, Peter MacCallam Cancer Centre, Freemasons Hospital

Ms Louise Malcolm, Senior Speech Pathologist, Western Health

Dr Peter Poon, Palliative Care Physician, Monash Health

Ms Wendy Poon, Nurse Coordinator, Head and Neck Service, Peter MacCallum Cancer Centre

Associate Professor Morton Rawlin, Vice President, Royal Australian College of General Practitioners

Dr Brian Stein, Medical Oncologist, Central Adelaide Local Health Network

Professor Robert Thomas, Chief Advisor on Cancer, Department of Health and Human Services, Victoria

Dr Jonathan Tomaszewski, Radiation Oncologist, Ballarat Regional Integrated Cancer Centre

Dr Eliza Tweddle, Surgeon, ENT Head and Neck surgeon, Albury Wodonga Health

Mr Neil Vallance, Head and Neck Surgeon; Head of Monash Health Head and Neck Service, Monash Health

Associate Professor David Wiesenfeld, Oral and Maxillofacial Surgeon; Head of Head and Neck Oncology, The Royal Melbourne Hospital; Hon. Clinical Associate Professor, The University of Melbourne

Mr Athol Willoughby, consumer representative

Alexandra Philpott, Project Manager, Optimal Care Pathways, Cancer Council Victoria

Advance Care Planning Australia

Allied Health Professions Australia

Australasian Association of Nuclear Medicine Specialists

Australasian Chapter of Palliative Medicine, Royal Australia College of Physicians

Australia and New Zealand Head & Neck Cancer Society

Australian and New Zealand Society of Neuroradiology

Australian and New Zealand Society of Palliative Care

Australian Cancer Survivorship Centre

Australian College of Nursing

Australian Medical Association

Australian Society of Medical Imaging and Radiation Therapy

Cancer Nurses Society of Australia

Clinical Oncology Society of Australia

Dental Health Services Victoria

Dietitians Australia

Head and Neck Cancer Australia

Interventional Radiology Society of Australasia

Medical Oncology Group of Australia

Oncology Social Workers Australia and New Zealand

Royal Australasian College of Dental Surgeons

Royal Australasian College of Physicians

Royal Australasian College of Surgeons

Royal Australian and New Zealand College of Radiologists

Royal Australian College of General Practitioners

Royal College of Pathologists of Australasia

Alfred Health

Cancer Australia

Cancer Council Victoria, Strategy and Support Division

Cancer Institute New South Wales

Concord Repatriation General Hospital New South Wales

Consumer representative

Department of Health and Human Services, Health and Wellbeing Division, Cancer and Aged Care Unit

National Cancer Expert Reference Group

Olivia Newton-John Cancer Wellness and Research Centre

St Vincent’s Hospital Melbourne

Other stakeholders consulted to provide feedback include relevant Cancer Council committees and networks, Integrated Cancer Services, Primary Health Networks and several health services.

The multidisciplinary team may include the following members:

  • care coordinator (as determined by multidisciplinary team members)*
  • dietitian*
  • head and neck surgeon*
  • medical oncologist*
  • nurse (with appropriate expertise)*
  • oral and maxillofacial surgeon*
  • pathologist*
  • plastic and reconstructive surgeon*
  • radiation oncologist*
  • radiologist/ nuclear medicine imaging specialist*
  • special needs dentist*
  • speech pathologist*
  • Aboriginal health practitioner, Indigenous liaison officer or remote general practitioner
  • clinical trials coordinator
  • dentist
  • exercise physiologist
  • fertility specialist if necessary
  • genetic counsellor
  • general practitioner
  • occupational therapist
  • palliative care specialist
  • physiotherapist
  • psychiatrist
  • psychologist
  • pharmacist
  • radiation therapist
  • social worker
  • spiritual/pastoral care.

* Denotes core members. Core members of the multidisciplinary team are expected to attend most multidisciplinary team meetings either in person or remotely.

Australian Adult Cancer Pain Management Guideline Working Party 2019, Australian adult cancer pain management guideline: ‘Cancer pain management in adults’, Cancer Council Australia, Sydney, viewed 6 June 2019, https://wiki.cancer.org.au/australiawiki/index.php?oldid=191646.

Australian Cancer Survivorship Centre 2016, ‘Survivorship care planning’, viewed 2 October 2020, https://www.petermac.org/sites/default/files/page/downloads/Survivorship_Care_Planning.pdf>.

Australian Cancer Survivorship Centre 2019, Community support organisations’ cancer survivorship care consensus statement, viewed 10 February 2020, https://www.petermac.org/sites/default/files/media-uploads/NGO_ConsensusStatement.pdf.

Australian Clinical Trials 2015, ‘Potential benefits and risks’, National Health and Medical Research Council, Department of Industry, Innovation and Science, Australian Government, Canberra, viewed 24 July 2019, https://www.australianclinicaltrials.gov.au/why-be-part-clinical-trial/potential-benefits-and-potential-risks.

Australian Commission on Safety and Quality in Health Care (ACSQHC) 2014, Health literacy: taking action to improve safety and quality, ACSQHC, Sydney, viewed 18 February 2020, https://www.safetyandquality.gov.au/sites/default/files/migrated/Health-Literacy-Taking-action-to-improve-safety-and-quality.pdf.

Australian Commission for Safety and Quality in Health Care (ACSQHC) 2015, Credentialing health practitioners and defining their scope of clinical practice: a guide for managers and practitioners, ACSQHC, Sydney, viewed 18 February 2020, https://www.safetyandquality.gov.au/publications-and-resources/resource-library/credentialing-health-practitioners-and-defining-their-scope-clinical-practice-guide-managers-and-practitioners.

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