STEP 5: Care after initial treatment and recovery

The term ‘cancer survivor’ describes a person living with cancer, from the point of diagnosis until the end of life. For NETs this would include both patients with resected disease having ongoing follow-up, as well as residual disease who need ongoing treatment and monitoring. 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 of 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.

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, 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).

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.

Different scenarios need to be defined in transitioning from treatment. This will include resected patients, as well as patients with stable disease and unstable disease. Treatment is often ongoing and sequential.

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.

Patients with NETs may need multiple courses of therapy over their lifetime, given the relapsing-remitting nature of NETs. Monitoring for late effects and second malignancies is required, and primary prevention and risk minimisation strategies are encouraged.

Specific monitoring for sequelae of therapy should include:

  • after surgery resulting in short gut syndrome – dietary intervention is required due to malabsorption
  • after and/or during continuous systemic treatment – review and physical examination every three to six months for two years, and every six to 12 months subsequently (ESMO 2014; Knigge et al. 2017)
  • follow-up echocardiography annually for patients who have carcinoid heart disease (they have an increased risk of cardiac valve dysfunction)
  • after PRRT monitoring of renal function and risk of myelodysplastic syndrome
  • monitoring for recurrence after surgery (Singh et al. 2018) – there are no specific follow-up guidelines because resected GEP-NETs are complex and emphasise closer follow-up for the first three years; however, it is recommended for follow-up to be for up to 10 years for fully resected small-bowel and pNETs and also identify clinical situations where follow-up is not required.

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).

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.


Many patients have a promising prognosis from low-grade NETs. Patients may need follow-up over a long period to monitor for progression or recurrence. Patients with incurable low-grade (grade 1) disease often survive for many (10+) years (NECA 2019a).

In contrast, patients with high-grade (grade 3) disease (high tumour burden that is aggressive) have poor progression-free survival, with an average survival time measured in the range of many months to a few years, despite best treatment (NECA 2019a).

There is a big variation in prognosis – there is a lot of variation in outcomes and no ‘magic number’ for a particular patient. Some patients find discussion of ranges in prognosis (best case / worse case / expected scenarios) very helpful, while others do not (NECA 2019a).

Prognoses based on the available information are a rough estimate because new treatments and insights can improve care and hence prognosis for all NET patients (NECA 2019a).

Table 2 provides a general guide for evaluating prognostic factors and outcomes for patients with NETs.

Table 2: Prognostic factors and outcomes for patients with neuroendocrine tumours

Survivors generally need regular follow-up, often for at least 10 years for most resected NETs and lifelong for those with incurable disease. 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:

  • 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
  • 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 health in general and potentially reduce the risk of other cancers, although there is relatively little evidence in NETs.

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.

Comparative data from randomised controlled trials are lacking in NETs. Therefore, treatment decisions are based on phase II trial data and patient/physician preferences. However, increasing active research and prospective trials are becoming available.

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.

Patients with NETs may experience multiple lines of treatment over many years and therefore benefit from reassessment of their supportive care needs:
on an ongoing basis during monitoring prior to each subsequent line of therapy.

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

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

  • management of symptoms such as fatigue, muscle weakness, intermittent abdominal pain, diarrhoea, skin rashes, headaches, anxiety and depression – a working relationship with the patient’s NET specialist is essential to manage side effects and guide treatment
  • nutritional needs and guidance for dietary intake
  • feelings of a ‘stolen’ identity – the patient’s identity being replaced with a focus on the disease – consider referral to a psychologist and NeuroEndocrine Cancer Australia’s guide for health professionals (NECA 2019b)
  • 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, B and C.

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
  • MDM outcomes
  • 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.