STEP 6: Managing recurrent, residual or metastatic disease
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).
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.
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.
Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.
