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.