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 clinicians regional societies), and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us. We need to do all we can to remove the term “Carcinoid” from our vocabulary …… and theirs. Read more on this issue by clicking here or on the picture:
Ancient Icons
2. When an outsider looks into the Neuroendocrine Cancer community, it shouldn’t be a surprise if their first thoughts were that it was some sort of animal welfare or zoological group, particularly focused on black and white striped animals. Unfortunately, on this issue, the community seems to be so infatuated by the subject, it’s blinkered to the abject failure of this marketing gimmick and it’s acting like more of a cult than a community. Many patients feel dehumanised. Like the 1907 parlance above, we also need to move away from this cult thinking. Maybe we should employ marketeers in our international awareness organisations and if we currently do, then we need another set ASAP. Read more here or click on the picture:
Click to read more
Don’t let people dehumanise you
Ancient Math
3. Finally, and I guess this is related to both of the issues above but more with the animal stuff than the nomenclature issue, the incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have both 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. Read more by clicking here or on the picture below. Let’s do the math, not the myth.
Black and White is not a cure – we need more research not gimmicks
In my opinion, the ancient, outdated, and misleading zebra term is fundamentally flawed in a number of ways.
1. Context. Contextually, the zebra represents a term for a diagnosis (i.e. a disease) but the patients are not their diagnosis, they are not their disease – they are humans.
So, when someone says, “I am a zebra”, they are in effect saying, “I am a disease”. If they say, “Dear Zebras”, they are saying “Dear Diseases”. Or the cringeworthy “My fellow diseases”
cringeworthy statementsI’d rather not hug a disease and I don’t want my disease to be strong
2. Scope. The term is heavily associated with diagnostics i.e. it has a very narrow scope. It does not sit nicely with the increasingly important long-term maintenance of patients – crucial when you consider this is mostly a slow-growing and therefore highly prevalent disease.
3. Confusion. The term ‘Zebra’ is not exclusively used by the Neuroendocrine Cancer community, it can be, and is used by, other conditions which quite often leads to confusion.
4. Relevance. The term is inextricably linked to rare diseases and as we all now know; NeuroendocrineCancer is no longer rare, even in US. Anyone who says that the group of diseases called Neuroendocrine Neoplasms (the correct scientific term) is rare, is clearly out of touch with the latest incidence and prevalence data or chooses to ignore for their own agenda.
I see people who say “my disease does not define me” ……. and then I note their profile picture has a zebra theme”
We need a new Paradigm
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.
Disclaimer
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By Ronny AllanOn 1 Comment
By Ronny Allan
Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.
One thought on “Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?”
You just reminded me to change my bio wording from rare to uncommon. ☺️
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You just reminded me to change my bio wording from rare to uncommon. ☺️