Neuroendocrine Cancer: No one gets it until they get it!

Translate

Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community.  Some ‘get it’ but many don’t.  Most understand ‘Cancer’, but they have real difficulty understanding ‘Neuroendocrine‘.  Despite how hard I try, I can see that some of them just don’t get it!  I told someone I had a primary in the small intestine once, they said “oh you have bowel cancer then?” – NO! 

One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It’s a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description.  In addition, this creates a disadvantage of awareness opportunities because of the use of incorrect cancer types – clearly many doctors and media organisations who are focused on the anatomy don’t ‘get it’ either!

Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex.  “How can it be so difficult” many of them ask.

If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing.  Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark.  The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, and you either die or live.  Simple, isn’t it?

One Oncology nurse who got cancer wrote an outstanding blog on her sudden realisation of what it was like to be a cancer patient.  Click here to read it. 

One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters.  They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.

Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease.  I also intend to continue to help with the undiagnosed (curiously some of these guys probably do ‘get it’ but just not yet formally ‘got it’).  I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.

Those who know, know

You may also be interested in:

50 Shades of Neuroendocrine Cancer – click here
Beware but be aware – click here
The Perfect Storm of Neuroendocrine Cancer – click here
The Syndromes of Neuroendocrine Cancer – click here
The Witch’s Brew of Neuroendocrine Cancer – click here
The Slowness and Sneakiness of Neuroendocrine Cancer – click here

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.  Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity.  Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

Thanks for reading.

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Sign up for my newsletters – Click Here

Disclaimer

My Diagnosis and Treatment History

Follow me on twitter

Check out my online presentations

Check out my WEGO Health Awards

Like my new awareness page – click here or on the photo.  (Like rather than follow please!)

Check out my Glossary of Terms – click here

patients included

Please Share this post for Neuroendocrine Cancer awareness and to help another patient

 
 
 

Experimental drug for Gastric NET – Netazepide

Gastric NETs When I wrote my post entitled “Spotlight on Gastric Neuroendocrine Neoplasms“, I explained what these were with some emphasis on the association with

Read More »

A Newsletter from RonnyAllan.NET – 13th March 2023

Newsletter from Ronny Allan – 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in

Read More »

Fructose intolerance – the NET Effect

Background   When I cast my mind back to my very first surgery, I remember all sorts of ‘plumbing’ issues but was told it would take

Read More »

A tribute to the life and legacy of Miranda Filmer

It’s true to say that Neuroendocrine Cancer is an older person’s disease, the epidemiology is clear on that.  But I do see many young people

Read More »

Treatment for Neuroendocrine Cancer: Beware of the alternatives

The Alternative Hype Cancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know

Read More »

RonnyAllan.NET – Summary of February 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Summary Another great start to 2023 and I thank those who continue to support my social media and this blog.  I’m keen to hear any

Read More »

A spotlight on Gastric Neuroendocrine Neoplasms

What are Gastric NENs Unlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach.  The

Read More »

Sometimes I climb hills just to piss my cancer off

Pissing off cancer is both metaphorical and physical Being diagnosed with a Grade 2 metastatic Neuroendocrine Cancer in 2010 was a bit of a shock.

Read More »

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

What is von Hippel-Lindau disease (VHL)? Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific

Read More »

4 thoughts on “Neuroendocrine Cancer: No one gets it until they get it!

  • I guess it depends if you care that much who understands what you’re going through. Some ppl just wanna do what they have to do and get on with life. Like ok, I have cancer, but it’s not my life. Some ppl have MS, some ppl have lyme, some ppl have side effects from their “regular” cancer. We all go through things, but those things don’t have to be who we are. Until they do have to and even then, it’s just a space in time and we move on one way or another…

  • Anne dabbs

    One of your better real life situations posts, Ronny! Thank you once agin for putting our thoughts into words!

I love comments - feel free!

%d bloggers like this: