I am not a zebra
One thing I've discovered when posting about this subject..... I'm not alone. In fact, I was actually surprised how many people cannot abide the infatuation with black and white striped animals eminating from certain parts of the NET community (incuding certain doctors). The main issue I have within the NET communiity is that it's based on 1940s thinking and in the days when science and statistics were not advanced as they both are today. Certain countries, organisations and individuals focus on this more than others, perhaps they're just out of date or quite like being part of the 'cult of…
Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message
Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. I respectfully suggest they stop it as I believe they are doing patients and NET awareness a disservice. A recent…
Neuroendocrine Cancer Awareness – let’s move into the 21st century
OPINIONThe build up to (so called) "NET Cancer Day" (sic) has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more adult, more likely be taken seriously and attract new audiences? p.s. even our day has a ridiculous name - "NET Cancer" decodes to "Neuroendocrine Tumour Cancer" which is quite ludicrous not only because of the grammar…
Not all cancers are black, white, blue, pink – some are very grey
Some people appear to have a fascination with cancer colours. Nothing wrong with that until it turns into a cult overshadowing everything else. I saw the same issues coming out of bloggers of varying cancer types via my association with WEGO (now part of Health Union), particularly with Breast Cancer and their pink thing. Over the last few years, I've seen quite a few posts entitled "Not all Cancer is pink". I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is…
Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Where do I start ........ well, there are three main things wrong with Neuroendocrine Cancer awareness. Ancient Misnomers 1. The community remains entrenched in 1907 terminology which needs to be brought into 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms. If clinicians, scientific organisations (including pharma and…
Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness. 1The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Two of many examples: Read more by clicking here or on the picture below. Let's do the math not the myth. There are some in the community who will suggest that some individual types…
Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness: If the community does not address these 3 issues, awareness will continue to fail and continue to flounder. I standby to help with the change, in fact, my work started in 2015 and continues. 1. To be told your cancer isn't really cancer is an insult. 2. To be called an animal is to be dehumanised. 3. To be rare when you're not, is a step back and is hindering access to clinical trial research. WE…