The title of this blog is the form of a rhetorical question. Neuroendocrine Tumours (NET) – Does rising incidence and prevalence need more research, funding and resources? I guess if you ask any patient, the answer is a resounding YES. I also very much guess that many doctors would repeat that answer. And some are openly calling for it. Here is another one example.
Introduction
Daniel M. Halperin, MD, of Winship Cancer Institute of Emory University, opens this OncLive Insights program on neuroendocrine tumors (NETs) and introduces Jonathan R. Strosberg, MD, of Moffitt Cancer Center, and Simron Singh, MD, MPH, of Sunnybrook Odette Cancer Centre. Singh then describes a consistent rise in the incidence of NETs over recent decades that has not plateaued. He attributes part of the increase to better screening and diagnostic tools but believes there is more to the story. Because many patients live for years with the disease, he argues that prevalence matters as much as incidence, noting that nearly 1 in 1000 people have lived with or are living with neuroendocrine cancer. Singh suggests NETs no longer meet the definition of a rare disease and should be considered uncommon, comparable to cervical or ovarian cancer, with implications for the resources and treatments patients need.
1. Rising Incidence of Neuroendocrine Tumors
NET cases rise steadily as survival boosts prevalence; experts argue it’s no longer rare, driving urgent demand for more resources and treatments.
Daniel M. Halperin, MD, of Winship Cancer Institute of Emory University, opens this OncLive Insights program on neuroendocrine tumors (NETs) and introduces Jonathan R. Strosberg, MD, of Moffitt Cancer Center, and Simron Singh, MD, MPH, of Sunnybrook Odette Cancer Centre. Singh then describes a consistent rise in the incidence of NETs over recent decades that has not plateaued. He attributes part of the increase to better screening and diagnostic tools but believes there is more to the story. Because many patients live for years with the disease, he argues that prevalence matters as much as incidence, noting that nearly 1 in 1000 people have lived with or are living with neuroendocrine cancer. Singh suggests NETs no longer meet the definition of a rare disease and should be considered uncommon, comparable to cervical or ovarian cancer, with implications for the resources and treatments patients need.
Click here to hear the short but fascinating discussion
2. The route to a diagnosis
Neuroendocrine tumors rise in incidence, often found incidentally, prompting multidisciplinary diagnosis, somatostatin receptor PET imaging, and evolving radioligand therapy options.
Jonathan R. Strosberg, MD, of Moffitt Cancer Center, and Simron Singh, MD, MPH, of Sunnybrook Odette Cancer Centre, describe how patients with neuroendocrine tumors (NETs) reach a diagnosis, moderated by Daniel M. Halperin, MD, of Winship Cancer Institute of Emory University. Dr Strosberg frames NETs as a family of related but distinct cancers. Small bowel NETs often present with abdominal pain, and hormonal syndromes such as carcinoid syndrome, insulinoma, and Zollinger-Ellison syndrome can occur. Many tumors are now found incidentally on scans or endoscopy, raising the problem of overdiagnosis of clinically insignificant tumors. In the United States, patients often see a gastroenterologist first or present to the emergency department; about 20% of patients with well-differentiated NETs have years of symptoms before diagnosis. Singh urges referring clinicians to recognize the wide spectrum of disease behavior and the anxiety the word cancer causes. Dr Strosberg advises considering NETs when patients have unexplained recurrent abdominal pain, bowel obstruction, or chronic diarrhea – but also acknowledge how difficult this is at primary care level given that it remains a relatively uncommon situation.
Click here to hear the short but fascinating discussion
Summary by Author (author’s views and interpretation)
Summary of key points
- NET incidence has risen consistently over recent decades and has not plateaued. There is a view that it has resulted from better screening and diagnostic tools probably explaining part of the rise. Dr Singh believes “there has to be more to the story than just that”.
- Because of survival times, prevalence matters as well as incidence. Dr Singh said nearly 1 in 1,000 people have lived with or are living with neuroendocrine cancer.
- Dr Halperin says NETs are being diagnosed more often but are often found late and by chance.
- Dr Singh wants to be sure the right resources and treatments are available to optimise both survival and quality of life.
- Dr Halperin said NETs were still rare but perhaps less rare than once thought. Singh says they no longer meet the definition of a rare disease. He suggests calling them “uncommon,” more like cervical or ovarian cancer than an extremely rare disease.
- Dr Singh urges referring clinicians to recognize the wide spectrum of disease behaviour and the anxiety the word ‘cancer’ causes (I see this weekly in my large private support group.
- Dr Strosberg and the others emphasised the heterogeneity of Neuroendocrine Neoplasms and then at the sub-level of Neuroendocrine Tumours. He describes them as a family of cancers rather than one cancer. Also importantly he emphasises that it’s not all about carcinoid syndrome and most cases are non-functional. Interestingly he estimates delayed diagnosis in 20% of patients based on his own hospital’s experience. This is much lower than advocate organisations use, indicating they may be working with old data.
- Dr Singh emphasised the importance of pathways for all patients.
Incidence vs prevalence – it’s important to understand the main differences between incidence and prevalence to fully understand the debate. Incidence is the quantity of diagnosis. prevalence is the quantity of people living with NET. Both can drive the need for awareness, funding research and funding resources to support the numbers.
There may be more episodes of this series to come. If so, I will add in due course.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
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