STEP 5: Care after initial treatment and recovery

The transition from active treatment to post-treatment care is critical to long-term health. After completing their initial treatment, patients should be provided with a treatment summary and follow- up care plan including a comprehensive list of issues identified by all members of the MDT. Transition from acute to primary or community care will vary depending on the type and stage of cancer and needs to be planned. In some cases, people will require ongoing, hospital-based care.

Survival from CUP is improving over time (Riihimaki et al. 2013b). Between 2010 and 2014, people diagnosed with CUP had a 14 per cent chance of surviving for five years compared with the age- and sex-matched general Australian population. This has increased from 6 per cent between 1984 and 1988 (AIHW 2018). While long-term survival may only apply to a subset of patients, the survivorship needs of all patients need to be considered.

International research shows there is an important need to focus on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors experience particular issues, often different from people having active treatment for cancer. Ongoing support and symptom management should be provided to patients with CUP throughout their care. Empathetic discussion about the prognosis of CUP, along with support and counselling by the treatment team and specialised services, may help alleviate distress (NCCN 2017). Many cancer survivors experience persisting side effects at the end of treatment. Emotional and psychological issues include distress, anxiety, depression, cognitive changes and fear of cancer recurrence. Late effects may occur months or years later and are dependent on the type of cancer treatment. Survivors may experience altered relationships and may encounter practical issues, including difficulties with return to work or study, and financial hardship.

Patients may be discharged into the community and generally need to see a specialist for regular followup appointments. In its report, From cancer patient to cancer survivor: Lost in transition, the former Institute of Medicine (now the National Academy of Medicine) describes four essential components of survivorship care (Hewitt et al. 2006):

  • the prevention of recurrent and new cancers, as well as late effects
  • surveillance for cancer spread, recurrence or second cancers, and screening and assessment for medical and psychosocial late effects
  • interventions to deal with the consequences of cancer and cancer treatments (including management of symptoms, distress and practical issues)
  • coordination of care between all providers to ensure the patient’s needs are met.

All patients should be educated in managing their own health needs (NCSI 2015).

After initial treatment, the patient, the patient’s nominated carer (as appropriate) and GP should receive a treatment summary outlining:

  • the diagnostic tests performed and results
  • tumour characteristics
  • the type and date of treatment(s)
  • interventions and treatment plans from other health professionals
  • supportive care services provided
  • contact information for key care providers.

There is no evidence that follow-up investigations of asymptomatic patients with non-specific CUP affects outcome. Patients in the specific-CUP subgroup should be followed up as per disease-specific guidelines. Specific examinations should be undertaken as clinically indicated (Fizazi et al. 2015).

Care in the post-treatment phase is driven by predicted risks (such as the risk of recurrence, developing late effects and psychological issues), as well as individual clinical and supportive care needs.

The responsibility for follow-up care should be agreed between the lead clinician, the person’s GP, relevant members of the MDT and the patient, with an agreed plan that outlines:

  • what medical follow-up is required (surveillance for recurrence, screening and assessment for medical and psychosocial effects)
  • care plans from other health professionals to manage the consequences of cancer and treatment
  • a process for rapid re-entry to specialist medical services for suspected recurrence
  • the role of follow-up for patients, which is to evaluate tumour control, monitor and manage symptoms from the tumour and treatment and provide psychological support
  • that they will be retained within the MDT management framework
  • the arrangements for follow-up with the neurosurgeon for a postoperative evaluation, which should occur four to eight weeks after surgery.

In particular circumstances, follow-up care can safely and effectively be provided:

  • in the primary care setting
  • by other suitably trained staff (for example, nurse-led follow-up)
  • in a non-face-to-face setting (for example, by telehealth).

Screening using a validated screening tool and referral to appropriate health professionals and community-based support services is required to meet the needs of individual patients, their families and carers.

In addition to the other common issues outlined in the Appendix, specific needs that may arise at this time include the following.

Physical needs

  • Fatigue/change in functional abilities is a common symptom, and patients may benefit from referral to occupational therapy.
  • Decline in mobility and/or functional status may result from treatment.
  • Assistance with managing complex medication regimens, multiple medications, assessment of side effects and assistance with difficulties swallowing medications may be required. Refer to a pharmacist if necessary.

Psychological needs

  • Patients may need support with emotional and psychological issues including, but not limited to, body image concerns, fatigue, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns.
  • Many patients with CUP find the uncertainty surrounding their disease and the limited treatment options difficult and would welcome the opportunity to ask questions and learn about others’ experiences (Boyland & Davis 2008).
  • Many patients with CUP and their clinicians have a poor understanding of their illness, have difficulty in explaining their illness to others, and have a sense of frustration in health professionals not having the answers (Boyland & Davis 2008, Karapetis et al. 2017).
  • Depressive symptoms are higher in people with CUP when compared with people with cancer of a known origin, so they require more psychosocial support and specific interventions (Hyphantis et al. 2013).
  • GPs play an important role in coordinating care for patients, including assisting with side effects and offering support when questions or worries arise. For most patients, simultaneous care provided by their GP is very important (Lang et al. 2017).

Social/practical needs

  • Patients may need support to attend appointments.
  • Potential isolation from normal support networks, particularly for rural patients who are staying away from home for treatment and for patients with neuropsychiatric symptoms, can be an issue. Social isolation can also compound distress (Australian Cancer Network 2009).
  • Financial issues related to loss of income and additional expenses as a result of illness and/or treatment may require support.
  • Help with legal issues may be required including advance care planning, appointing a power of attorney and completing a will.

Spiritual needs

  • Multidisciplinary teams should have access to suitably qualified, authorised and appointed spiritual caregivers who can act as a resource for patients, carers and staff.
  • Patients with cancer and their families should have access to spiritual support appropriate to their needs throughout the cancer journey.

Information needs

  • CUP patients are more likely to want written information about their type of cancer and tests received but less likely to understand explanations of their condition (Wagland et al. 2017).
  • Patients and carers may need appropriate information about how to manage alterations in cognitive function and potential changes in behaviour.
  • Patients may need advice about safe driving.
  • Patients from culturally and linguistically diverse backgrounds may need information provided in other formats.

Rehabilitation may be required at any point of the care pathway from preparing for treatment through to disease-free survival and palliative care.

Issues that may need to be addressed include managing fatigue, falls, cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to disease and its sequelae.

Many people with CUP receive palliative treatment to relieve symptoms and improve quality of life.

In all patients with CUP, palliative care interventions should be considered and utilised as appropriate (NCCN 2017). It is preferable for specialist palliative care to be initiated during the diagnostic stage, and for the majority of patients this will remain the most important intervention during their illness (Abdallah et al. 2014). Palliative care is integral throughout the patient pathway, and people who have undergone early integrated palliative care build rapport with their oncologist and are more likely to discuss end-of-life care wishes (Temel et al. 2017).

Early referral to palliative care can improve the quality of life for people with cancer (Haines 2011, Temel et al. 2010, Temel et al. 2017, Zimmermann et al. 2014) including better management of physical and psychological symptoms. This is particularly true for poor-prognosis cancers (Cancer Council Australia 2017, Philip et al. 2013, Temel et al. 2010, Temel et al. 2017). Furthermore, palliative care has been associated with the improved wellbeing of carers (Higginson 2010, Hudson et al. 2014).

Ensure carers and families receive information, support and guidance regarding their role according to their needs and wishes (Palliative Care Australia 2005).

The patient and carer should be encouraged to develop an advance care plan (AHMAC 2011).

Further information

Refer patients and carers to Palliative Care Australia.

The lead clinician should:

  • explain the treatment summary and follow-up care plan
  • provide information on the signs and symptoms of recurrent disease
  • provide information on secondary prevention and healthy living.

The lead clinician should ensure regular, timely, two-way communication with the patient’s GP regarding:

  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • the patient’s progress
  • recommendations from the MDT
  • any shared care arrangements
  • a process for rapid re-entry to medical services for patients with suspected recurrence.