Introduction: Being diagnosed with cancer is a frightening and confronting experience. Being diagnosed with a less common cancer like Neuroendocrine (NET) Cancer is not only terrifying, but isolating as your diagnosing doctor may never have seen anyone like you before. This does not make you confident with the outcome of your journey. Over the last 5 to 10 years we have seen the path for NET Cancer patients more illuminated through the combined efforts of patients, patient advocates and dedicated clinicians. We know what we need to improve patient outcomes, but these goals are harder to achieve when there is a need to shift the overall treatment paradigm to truly personalised care. What has worked for common cancers will not work when dealing with cancers such as NET when each patient/ tumor is unique.

Discussion: Clinical trial design that can still provide meaningful research and trial results needs to be adapted and reviewed to work with smaller patient numbers. Support services should be niche and specialised. Information sought by educated patients needs to be correct and delivered by people who have experience in the disease. Centres of excellence in NET / rare cancers in both metro and regional centres must be formalised as well as financially and professionally supported in order to capture and centralise data, and devise best possible treatment plans in transparent, information sharing MDTs.

Conclusion: Across the board more education must be undertaken about NETs and less common cancers and their symptoms. It is clear that a national approach from government and professional bodies is needed. In 2015, NET cancer patients are more empowered and actively advocating for greater access to treatments and better services. We need to harness this enthusiasm through organisations such as The Unicorn Foundation with the support of the Federal and State Government’s to make a real change in the lives of these patients.