Neuroendocrine tumours (NETs) are an uncommon but heterogeneous group of malignancies; incidence and prevalence is rising.
There is little literature that specifically deals with the concerns and issues experienced by people living with and beyond a diagnosis of NET (that is, survivors). Limited extant data suggests that NET survivors experience many issues that are similar to other survivor groups, including physical concerns, such as fatigue and pain; emotional issues, such as fear of cancer spreading, uncertainty about the future, and depression; altered relationships; financial concerns; role and lifestyle changes, and changes in work. They may also experience unique symptom issues, including diarrhoea, cramping and breathlessness. These issues need to be identified and appropriately managed.
Survivors frequently encounter inexperienced health care professionals and poor communication between providers, resulting in suboptimal care. As with other survivor groups, consideration should be given to models of care that may not be medically led or face-to-face. These might include greater use of nurse-led review and better integration with primary care, as well the use of phone and internet-based reviews, and remote monitoring. Many providers (including primary care practitioners) likely lack the information and guidance necessary to adequately care for survivors.
Preliminary data suggests that NET survivors value survivorship care plans (SCPs). SCPs have been endorsed internationally. They include a summary of diagnosis and treatments, recommended follow up, and strategies to remain well.
More evidence is needed to guide effective follow up care, including regarding the frequency of visits and use of various testing. Existing international guidelines have a relatively narrow focus and should be broadened to consider the whole patient experience.
There are many research gaps, including better describing the short and long-term experiences and unmet needs of survivors, establishing the most effective management of late and long term issues, strengthening the evidence around surveillance, and development of sustainable, cost-effective models of care.