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Ronny Allan
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.
Hormonal Syndromes and NET
NET hormonal syndromes can be more difficult to detect. Firstly, it must be remembered that not everyone will present with a hormonal syndrome, in fact most NETs are non-functional, another myth. In a chicken and egg sense, there must be tumours if there is a hormonal syndrome. So, once again, imaging can be a case solver. Pre-diagnostic pathology can also help as a major clue – in my own case, a low hemoglobin score triggered my eventual diagnosis (BOOM!).
This area is where we really need “NET detectives”. However, even a regular detective can trigger a diagnosis as proven by my own experience. But NET is a very experienced ‘health criminal’ and will ‘pick your pocket’ without anyone knowing. Blood tests are normally a clue but as the symptoms are so general, they are so ‘day to day’, getting the primary care to carry out a specialist tests for NET can prove difficult. You just can’t screen the entire population for a NET because they present with day-to-day symptoms – it’s just not practical, nor is it achievable. For example, there are significantly more people with asthma, diarrhea, IBS, heart issues, flushing, heartburn, and blood pressure issues, than there are NET diagnoses. Again, this is where we need a proper awareness and more NET detectives, and it may need more than one interview to get a lead or a breakthrough, ergo someone with NET may need to see several people as part of the analysis.
Sometimes, a doctor (or a nurse) thinks outside the box, sometimes a doctor (or a nurse) thinks like a detective. But simple awareness can potentially make a good detective and can be key to solving cases. Awareness is not just standing outside the shopping centre shaking a bucket, making doctors and nurses aware of NETs can make a real difference. It’s just not easy to do when you consider the above.
Awareness
One of the key advantages of no longer being a rare disease, is that more doctors are now interested. More doctors now know more about this disease, more people in the general population know about the disease. The other issue is ‘blanket statements’ being made about NET despite its widely known heterogeneity.
Social media is undoubtedly playing a part. Think back prior to 1990s/2000s, few people had access to the internet but nowadays just about everyone has access via mobile phones and tablets. This helps awareness as people can easily find stuff (doctors and patients) although they can also find the wrong stuff. Dr Google is not registered or certified (yet) and neither is ChatGPT.
Both of the facts above are a huge advantage in detecting NETs.
I was interested in a report from US earlier this year where it was claimed that the perceived rarity of NET was holding back NET clinical research. I would also claim (forcefully) that it is holding back awareness including within the healthcare community. The report I refer to concluded that NETs are uncommon but definitely not rare. This is a good thing for awareness ….if only those responsible for awareness would change their ‘modus operandi’. I respectfully suggest to anyone involved in awareness to stop spreading rare messages and rare themes, I genuinely believe you are part of the problem, you are working against the progress we need.
What is a NET Specialist?
You can read a useful summary of NET Specialists, NET multidisciplinary teams (MDT) and NET Centres of Excellence (CoE) by clicking this link for the picture below:
I’m a patient – how can a NET Specialist or NET MDT help me or my loved one?
Cancer is complex and NETs are no stranger to this description. Studies have shown that the multidisciplinary approach is the best way to deliver the complex care needed by cancer patients. However, it must be said that it’s also a challenge requiring organisational and cultural changes and must be led by competent healthcare managers who can improve teamwork within their organisations. When this happens, these are the most qualified and experienced “NET Detectives”. The next section will provide you with the “list of lists” but local knowledge from other patients is very useful, and that means joining my group, the largest in the world – see green box down a bit. I have many amateur sleuths in there who can definitely point you in the right direction (but remember they are not doctors)
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.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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Ronny, this is an absolutely outstanding Newsletter and must help and support so many people. I’ve always been proud to call you one of my oldest and best friends; you’re an amazing human being. Thanks for being you.
many thanks George, just applying old skills into new ones. We must meet up soon!
We will Ronny. We are off on holiday from 6th – 13th May, then we can get something in the diary. See you soon.
My journey started with with a swollen lymph node in left groin Oct 2022. The next few months were filled with scans, biopsies and consultations that finally produced a quasi diagnosis of Neuroendocrine Tumors with metastasis and from an unknown source.
My care team from Duke ruled out resection and radiation due to complexity of locations.
Additionally the tests for possible immunotherapies were ruled out due to receptors not lining up to support therapies.
Duke suggested a second opinion and we sought out University of Kentucky.
The good news is they agreed with current path which is now a the more aggressive FOLFIRINOX, of which I’m in my second round.
Scans are scheduled in the coming weeks and encouraged by some noted changes to a very problematic lymphedema left leg.
My question is what if any avenues have you seen if the FOLFIRINOX doesn’t stymie or shrink the tumors?
Thank you in advance for any input.
Steve Stutts
North Carolina
it’s almost impossible for me to respond to that because the grade and differentiation of the tumors (amongst other things) are key in any treatment decisions/recommendations.