The NET Detectives is an awareness post.

Detecting NETs

In general, it’s probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary.  In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don’t have a range of imaging devices on site, referrals are often necessary to investigate more.  I don’t believe it’s right to say this referral is a misdiagnosis, it’s just another stage in the investigation, another hunt for clues.

The number of cases where incidental diagnoses occur is fairly significant in certain types. I have no numbers but appendiceal NETs are a good analogy. Symptoms are experienced, primary care probably suspects appendicitis but as I said above, they do not have the tools on site to check.  Therefore, a scan is ordered at a local hospital suitability equipped; and the NET is found incidentally.  The thought that the primary care check should have diagnosed the appendiceal NET on the spot is fanciful because the reaction to certain symptoms presented often leads to a further test to narrow things down.  Moreover, only around 1% of appendectomies turn out to be a NET.  As the results are normally sent from secondary care back to primary care, technically the diagnosis has been successful, incidentally or not.  This happens in many illnesses, not just NETs.

According to GP Notebook, up to 50% of patients who present in general practice, a firm diagnosis based on pathology may not be possible. Where diagnosis at this level cannot be achieved, working diagnoses are often expressed at a lower level in terms of the patient’s symptoms, signs or problems. A diagnosis is the current statement of probability about the cause of an illness rather than of absolute certainty. As such it must be regarded as provisional unless more evidence is available or until there is no longer a need for a diagnosis at all. Provisional diagnoses should not always be considered as misdiagnoses.

But even detectives specialise, a general practitioner’s job is difficult given the possibility of 10,000 people arriving at their desks with 10,000 different illnesses.  However, experience over many years, improves their detective skills. But in many ways and for many reasons, awareness and NET detective skills at secondary care are more likely to solve cases quicker.