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.

Prognosis

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
• mycareplan.org.au
• South Australian Cancer Service – Statewide Survivorship Framework resources
• American Society of Clinical Oncology – guidelines.