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 plowed 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) and then be declared in remission.

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. 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. Worrying they can also be really easy boxes to tick for illnesses such as IBS, indigestion, and menopause.

However, Neuroendocrine Cancer forms an increasing number of these diagnoses thanks to greater awareness, better diagnostic tools, and more accurate reporting systems, including the ability to get the correct cancer type into the statistics.  However, although numbers are on the increase, it doesn’t necessarily directly relate to a better diagnostic experience – that is clear from the third reason I outlined above. 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.

Neuroendocrine Tumours or NETs for short are 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”

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 an almost impossible task, a better use of resources would be secondary care where patients are more likely to be diagnosed (with something) and where many incidental tumours are eventually found.  Many people would say “ah but if they can learn what flushing and diarrhea could be“.  It’s a good point but 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.  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. 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

I’m fairly certain that medical science will come along with novel ways of helping but that is somewhat downstream.  If only a referral to a specialist could actually be a referral to a team of different but highly coordinated specialists – a bit like a Multi-Disciplinary Team (like a ‘Tumor Board’) but operating at the pre-diagnostic phase with quick access to all the regular diagnostic tools without any further referrals. That would surely help cut down some of the ‘ping-pong’ visits between primary and secondary care and a team of experts is more likely to ‘think outside the (tick) box’ than a single specialist who has focused only on his or her ‘specialty’.  

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

Find a Specialist and ask these 10 questions

Unless you are seeing a known specialist in this disease, box-ticking might continue after diagnosis.

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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 as they are not members of the private group or followers of my sites in any official capacity.  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

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