Introduction

Neuroendocrine tumors (NETs) range from low to high-grade tumors occurring in various organs. Small- and large–cell cervical NETs are extremely rare, highly aggressive, with limited treatment options and poorer outcomes compared to cervix cancers with more common histologies. The needs of women with this cancer type are not well documented. It is suggested they experience higher levels of anxiety, worry, and emotional distress; likely due to fear of poorer prognosis; uncertainty about treatment success and lack of adequate patient support. Anecdotally these women report available supports for people with cervix cancer, or NETs of non-gynaecological origin, as inadequate to their specific needs.

Aim

To explore experiences of women diagnosed with cervix NET receiving radiotherapy treatment between 1998-2013 at the Peter MacCallum Cancer Centre (PMCC).

Method

A retrospective audit of a prospective database on cervix cancer patients with histological diagnosis of small- and large–cell NETs and corresponding electronic medical records was carried out.

Results

31 eligible patients were identified. Mean age at diagnosis was 49 years (range 22-92 years). 20 had confirmed diagnosis of small cell NET; 6 large-cell NET; 2 mixed tumors; 3 small cell cervix without a confirmed NET component. 13 patients remain alive, 17 now deceased (seven patients within 12 months of diagnosis); 1 lost to follow-up. 18 were diagnosed with early stage disease. 19/31 (61%) had documented needs for professional emotional support. 7 report psychological morbidity related to fear of cancer recurrence. Patients still alive, report high levels of distress. 3 had accessed a US on-line support specific to cervical NETs.

Conclusion

High levels of distress and fear of recurrence reported in this population may reflect the lived experience of a rare cancer diagnosis with a poor prognosis. More local supports that are targeted for women diagnosed with a cervix NET are required.