I’ve been researching Neuroendocrine Cancer for some time now.  Why do I do this?  Whilst I have a great medical team, I’d also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don’t want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd).

I actually enjoy researching neuroendocrine disease and I’d like to think it was all in one book somewhere – this simply isn’t the case! From what I’ve read since diagnosis, I suspect the ‘all encompassing’ book would need to be about 10 feet thick. I also suspect I’m still at the tip of the iceberg! I don’t have room in my house for a 10 feet thick book, so I have to rely on ‘Professor Google’ a lot.  I learnt early on to be careful not to believe everything I find on the internet (…..including on patient forums/groups and even on advocate sites and certain healthcare sites).

Once you have been researching NETs for some years you learn which are the best sites and what is the sort of thing to ignore.  This wisdom came in handy recently when I was studying neuroendocrine tumours of the thyroid.  To understand the subject, I also researched the Thyroid (in the anatomical sense) and then all types of Thyroid Cancer. It didn’t take long before my head was hurting but it became the subject of several blogs. 

One of the issues with Neuroendocrine Cancer is the diversity of locations and symptoms in terms of the anatomy and presentational difficulties. Neuroendocrine tumours (NETs) are uncommon, and they present complex challenges to diagnosis and treatment. Even in the case of metastatic spread to the liver and beyond, there are some important differences in the nature of these tumours compared to regular gastrointestinal, lung and pancreatic cancers.  Many patients are first thought to be suffering from other ailments before finally being diagnosed with Neuroendocrine Cancer, thus delaying their treatment.

It’s not just confusion over vague symptoms leading to misdiagnosis of common ailments, I even found a story of someone who had been misdiagnosed with Pancreatic Cancer and been given 12 months to live.  One year later, the person asked a doctor friend why he was still alive and feeling OK which led to further checks and the discovery that this person actually had a Neuroendocrine Tumour of the Pancreas – a less aggressive form of cancer (normally) which was treatable and offered a better prognosis.  Amazing story but this person’s treatment was delayed by 12 months. NETs in any most parts of the body are best left to (or overseen by) Neuroendocrine specialists (in my opinion). However, had this guy done his own homework, he might have asked some key questions making his doctors at least think of some alternative scenarios.  Food for thought?

For those who advocate for themselves or others, I do believe some knowledge helps. For those who need help with that, my group (see green box below) functions as a foundation where you can not only get technical help but also help from many others in the same position.  I have lost count of the number of people who have arrived without much idea about NET and how to advocate for themselves. I watch them go on to start looking after themselves better and be able to understand more about NET.  Moreover, they appear to be more confident about approaching healthcare professionals with pertinent questions. 

Thanks for reading