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Ronny Allan
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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 NEED A NEW PARADIGM.
First thing wrong
The community remains entrenched in 1907 terminology which needs to be brought into 2021. 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 organsiations (including pharma), 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. Read more on this issue by clicking here or on the picture:
Second thing wrong
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, that it’s blinkered to the abject failure of this marketing gimmick and it’s more of a cult than a community. Like the 1907 parlance above, we also need to move away from this cult thing. Maybe we should employ marketeers in our international awareness activities and if we currently do, then we need another set ASAP. Read more here or click on the picture:
Third thing wrong
Finally, and I guess this is related to both of the issues above, 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 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.
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I am in total agreement. Terminology must change so patients with NETs understand this disease is not rare. NETs is not as common as some other cancers and can be tricky to diagnose. Of course, there is a process of elimination through various tests and procedures. But thinking in terminology taught in medical schools must change.
My husband, a practicing radiologist until his death last month, lived by the zebra code. OLD SCHOOL! We must use proper language to describe common, not so common and uncommon medical conditions. Patients need to educated, not insulted.
thanks, I often feel alone in this thinking. I know I’m not but more people within the community need to speak up and not be frightened to challenge.