LIFE-NETs (Life Following Excision of Neuroendocrine Tumors): a Multi-institutional Prospective Observational Cohort Study of Quality of Life After Surgery for Neuroendocrine Tumors

Background

Neuroendocrine neoplasms (NENs) are a unique group of malignancies distinguished by their more indolent biology and endocrine secretion.1 Because of indolent biology, patients with well-differentiated NENs (neuroendocrine tumors - NETs) can experience prolonged survival even in the presence of active disease, with up to 50% at 10 years, and may be considered a "chronic cancer". Unlike other malignancies, the goals of therapy for NETs are largely focused on control over cure. Rather than focusing solely on tumor eradication, treatment aims for long-term management that encompasses both tumor and endocrine control as well as prevention of loco-regional complications from tumor deposits.

Surgery holds a pivotal role in the management of NETs, both for loco-regional and advanced disease with distant metastases.4 As an initial intervention, surgery serves a dual purpose. First, it acts as a primary treatment modality for achieving tumor and endocrine control. Second, by reducing the tumor burden surgically, it can have therapy-sparing effects whereby it can delay the need for subsequent lines of therapy, which often come with their own side effects and complications. This is especially important in the treatment of a chronic cancer where patients are expected to require ongoing management in the long-term.

However, the decision to opt for surgery is not straightforward. There's an intricate balance that is needed between the potential benefits of surgery and the potential risks of post-surgical morbidity. Indeed, some have voiced concerns that the potential risks and costs associated with surgical morbidity may outweigh the benefits.

A considerable gap in our understanding of the benefits of surgery for NETs is the lack of data regarding patients' quality of life post-surgery. The majority of existing research on this topic either adopts a retrospective approach or lacks the application of standardized, validated tools for assessment. Recently, a single-centre study analyzed a cohort of 31 patients undergoing surgical treatment for small bowel and pancreatic NETs, including 46% of patients with metastases. Using the SF-12 questionnaire, that study reported improvements in both mental and physical health at 12 months post-surgery compared to pre-operative levels. The largest improvements were observed in patients with larger primary tumors, metastatic disease, or those who received systemic therapy after surgery. However, the study's limited sample size and single-centre design significantly restrict its generalizability.