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.

1. 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. Two of many examples:

Read more – click on the picture above. Let’s do the math not the myth.

There are some in the community who will suggest that some individual types of NETs will be rare – this is accurate. However, the point they are missing is that does not mean the term should be applied to all types of Neuroendocrine Neoplasms (that means all Neuroendocrine Tumours (NET) and all Neuroendocrine Carcinoma (NEC)). There are rare subtypes of the most common cancers but these common cancers are still common!

e.g.

etc etc etc

2. Linked to the issue above, the community remains entrenched in 1907 terminology which needs bringing 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 organisations (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:

3. And this is linked to both of the above points. 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 support 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. This slavish adulation has become more of a cult than a community and it’s not helpful when so called advocates jump on this cult bandwagon without realising that it is condescending and patronising to many patients and caregivers. Like the 1907 parlance above, we also need to move away from this cult thinking. Maybe we should employ professional marketeers in our international awareness activities and if we currently do, then we need another set ASAP. Read more here or click on the pictures below:

UKINETS 2017

ASCO

WE NEED A NEW PARADIGM FOR NEUROENDOCRINE CANCER

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 rare when you’re not, is a step back.

2. To be told your cancer isn’t really cancer is an insult.

3. To be called an animal is to be dehumanised.

Don’t get me wrong, I support Rare Diseases but only the ones which are actually rare.