Background:

NETs are rare and heterogeneous malignancies. Their management is challenging due to non-specific symptoms and delayed diagnosis. We report a survey aiming to describe frequency of symptoms reported by patients diagnosed with NET and impact of time since diagnosis.

Methods:

The ANZ cohort of an international online patient survey, conducted between February-May 2014, was analysed for patient symptoms. Data requested included demographics, time since diagnosis (<5 years versus 5+ years), location of primary tumour, functional symptoms (flushing, diarrhoea, wheezing, cramping) and non-functional symptoms (e.g. pain or pressure from growing tumour). Findings were compared using Chi-squared test with significance at p <0.05.

Results:

In ANZ, 138 patients completed the survey (68% female, average age 54 years; Grade 1-2 in 56%, Grade 3 in 3% and unknown in 41%). The primary was most commonly in the gastrointestinal tract (GI-NET, 49%), pancreas (pNET, 21%) and lung (9%).

50% of patients reported functional symptoms, 19% non-functional symptoms, 17% were asymptomatic and 14% uncertain.

Functional symptoms were reported in 67% of GI-NET, 38% of pNET and in 8% of pulmonary NET (p<0.0001). The most commonly reported functional symptoms were diarrhoea (n=63, 40%), skin reactions (including flushing) (n=59, 43%) and dyspnoea (n=46, 50%). Diarrhoea was reported in 63% of GI-NET, 31% of pNET and 8% of pulmonary NET (p<0.001).

The most commonly reported non-functional symptoms were fatigue (n=81, 73%), abdominal pain or cramping (n=59, 46%) and nausea (n=54, 37%).

Patients diagnosed < 5 years ago were less likely to have functional symptoms (43% vs 62%), more likely to have low grade NET (43% vs 25%) and reported less symptoms.

Conclusions:

Most NET patients have significant functional and non-functional symptoms. The incidence of functional symptoms, particularly diarrhoea, is higher in GI-NETs. Patients diagnosed more recently were more likely to have lower grade NETs with fewer symptoms.