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).