Prevalence - Ronny Allan - Living with Neuroendocrine Cancer

Tag: Prevalence

In medicine, a measure of the total number of people in a specific group who have (or had) a certain disease, condition, or risk factor (such as smoking or obesity) at a specific point in time or during a given period of time. For example, the prevalence of Neuroendocrine Neoplasms may show how many people in the UK were diagnosed with breast cancer within the past 10 years, and are still alive on a certain date.

22Jan 2023 by Ronny Allan 2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy

USA finally commits UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare. That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such as “carcinoid” which seems rifer in USA than many other parts of the world. USA is normally at the forefront of progress so let’s hope they will now get on with…

14Aug 2017 by Ronny Allan 16 Comments

The Invisible NET Patient Population

Awareness

OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine Neoplasms – not as rare as you think". However, most things I read indicate the figures were understated (words used by several NET specialists. Despite this date now being 8 years…

07Jul 2015 by Ronny Allan 30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world. Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…