A Neuroendocrine Cancer awareness post by Ronny Allan.
The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the ‘difficult to diagnose’ category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. However, in many cases which don’t seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It’s SNEAKY!
Every year the advocacy organisations push out skewed statistics, but few take a wide enough view to get the full spectrum of patient experience. I accept that in some cases, it can be a little bit noisy via over-secretion of hormones causing hormonal syndromes, and this has advantages and disadvantages. For example, some of the most common misdiagnoses appear to be Irritable Bowel Syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues.
There are even extreme cases where patients have been told they may have a mental illness following constant visits to their local doctors. These cases can lead to months or in extreme cases, even years of delay from the onset of symptoms. The advantage is that it can help get to a diagnosis and sometimes luck is involved in terms of who you see or where you are seen (the same for other difficult to diagnose conditions).
What’s becoming clear is that the increase in early-stage disease means these diagnostic experiences are improving but more still needs to be done. We have more specialists than before, but we still need even more. I sometimes describe my diagnosis as early late stage and you read why here.
I’m not completely up to speed on what happens overseas, but in the UK, you normally only have 10 – 20 minutes (5 in some scenarios) to see a doctor (although my own experience is that many ignore that rule and if they sense a bigger issue). No matter how hard we push, this can sometimes be insufficient to diagnose or even suspect NET (or indeed many other diseases).
However, a NET diagnosis is more likely to be as a result of a number of visits where a picture can emerge and even then, a referral to a ‘symptom’ specialist may not necessarily lead to the immediate discovery of a NET. In fact, a ‘nothing serious found’ referral back from secondary care/specialist to a person’s GP/PCP is not uncommon.
There is no harm in targeting GP/PCP but they are more likely to be following instincts by referring due to symptoms rather than in the game of diagnosing obscure cancers which look like other things. I’m a big believer in primary care being the trigger for ‘something‘ which should be figured out at secondary care where you are more likely to get access to specialist doctors and specialist diagnostic tools etc. There is data to suggest that ‘symptom specialists’ frequently refer patients back to primary care, indicating the education at secondary care level may be a better focus for NET awareness and it would appear some specialists agree with this approach. NETs are dangerous despite the normally indolent course, but they have a propensity to metastasize meaning that the chance of a curative scenario is vastly decreased for many. It can kill if left untreated. We certainly need more NET Detectives.
There is new data confirming the incidence of NETs is on the increase and it’s no longer rare – I’m certain this is due to increased knowledge, more efficient diagnostic tools (including Somatostatin Receptor PET/CT Scans) and better reporting methods, e.g. Lung and Pancreatic NETs now being properly reported as NETs rather than Lung and Pancreatic Cancer respectively, particularly at Grade 3. This is great news although many remain invisible, you only have to look at this Rectal Cancer article to see that.
However, it’s still a ‘quiet cancer’ and there’s a whole invisible patient population out there somewhere.
Neuroendocrine Cancer – shh! can you hear it?
I didn’t hear it and was totally unprepared for my diagnostic experience, to the point that I initially ignored it.
By the way, Neuroendocrine Cancer hates awareness so share with others!
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Doctor kept telling me I had asthma. I was diagnosed in July 2002 with primary of the lung. In 2013, they found bone mets after severe pain in back area. It seems I’ve been doing treatment after treatment. Most recently did chemo last year now Afinitor and radiation to hip area.
Every chance I get I tell people about my condition and encourage them to be diligent with the tests no one likes to have done. That was the way my little friend was found.
My exact situation, I was diagnosed with IBS, then diabetes and heart failure, lost years 🙁
[…] Neuroendocrine Cancer – I didn’t hear it coming […]
thanks for sharing!
Great reminder of just how ‘quiet’ Neuroendocrine Cancer can be…