There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

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Thousands of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured.

The problem with certain cancer symptoms is that they are not always clear-cut.  For example, take symptoms such as abdominal pain, flushing, diarrhea, weight loss, or fatigue – those can be caused by a whole host of things, many of which aren’t even cancer (and sometimes it isn’t NET either).  It’s difficult for any doctor to work out the cause of such things let alone which tests to send them for – they can be really difficult boxes to tick. Worryingly they can also be really easy boxes to tick for illnesses such as IBS, indigestion, asthma and menopause.  Many of these things will not result in a scan or a scope and a NET will remain undiagnosed.

Many people are still diagnosed too late. In addition, the scenario I outlined above is far from being a normal experience for a Neuroendocrine Cancer patient, particularly well differentiated Neuroendocrine Tumours (NETs) due to their heterogenous nature.

Hard to detect or hard to understand

Both!

NETs is one of a number of ‘hard to detect’ cancers because many patients present with one or more of these vague symptoms.  It’s also one of the reasons why they are normally found at secondary care institutions and perhaps after several visits to a physician involving journeys back and forth between primary and secondary care before the diagnosis was finally made.  And then there are the thousands and thousands of ‘undiagnosed’ either stuck in the diagnostic system or not yet aware they have NETs.
Anyone reading my pages or inside my private Facebook group will have heard this sort of story:

“It’s IBS”
“It’s menopause”
“It’s asthma”

….. and even after a diagnosis:

“It’s OK, it’s not really cancer”
“You’re cured”
“You don’t need surveillance”

Often they are diagnosed with cancer but the wrong cancer type!

Education is key.  So, what can be done to improve the diagnoses of ‘hard to detect’ cancers such as NETs? I don’t have any real answers for you although I have postulated a number of times about where we might focus in terms of education.  Trying to educate general practice is a herculean task, a better use of resources might be secondary care where patients are more likely to be diagnosed (with something) and where many incidental tumours are eventually found through imaging/endoscopy.  Many people would say “ah but if they can learn what flushing and diarrhea could be“.  It’s a good point but based on an incorrect proposition.  Most people know that is almost always a sign of metastatic disease, so perhaps the impact is not great as imagined in an earlier stage context – plus the thought that all NET patients flush and have diarrhea is a myth created by years of unmoderated dross in patient groups and on healthcare sites. Worryingly, also from the mouths of healthcare professionals who simply don’t understand the heterogeneity of NETs (and Neuroendocrine Neoplasms (NENs) generally)  More early-stage disease is likely to be found in secondary care as incidental diagnosis and this has been said many times in recent epidemiological papers.

Hard to understand? Of course, the rise of online information and patient forums means that some undiagnosed are taking the questions with suggested answers to their doctors.  In some of my own exchanges online, I find many undiagnosed people quite adept at using Dr Google.

Education and awareness is key to helping with the detection and understanding.  In the last 5 years I have seen some improvements in all areas but some issues persist and some established have not quite grasped the damage that is being don’t to education and awareness. For example, one area is the statements that NENs are rare which is not only inaccurate but also risking continued misdiagnoses at primary and secondary care level.  If the healthcare industry is continually told these neoplasms are rare (when they are not), they are more likely to be ignored.

I’m fairly certain that medical science will come along with novel ways of helping but that still seems downstream. For example we need 21st century tests.  We also need a new awareness paradigm where people (including NET specialists and advocate organisations) need to stop playing the zebra game thinking it’s awareness, many attaching some themed anecdotes that should have been left behind in the 1980s.

In the meantime, if you see someone ticking a box too quickly, make sure you know which box is being ticked and challenge it if necessary

Thanks for reading

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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