Home » Awareness » NET Syndromes – chicken or egg?

NET Syndromes – chicken or egg?

Recent Posts


We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken’s ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it!

On a similar subject, I’m often confused when someone says they have been diagnosed with ‘Carcinoid Syndrome’ and not ‘Carcinoid Tumours’ or ‘Neuroendocrine Tumours’.  So which comes first?  I guess it’s the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios.  Alternatively, a tumour may be found in an asymptomatic patient, often incidentally.  However, on the basis that the widely accepted definition of Neuroendocrine Tumours would indicate that a syndrome is secondary to tumour growth, then the tumour must be the chicken.

I sometimes wonder what patients are told by their physicians….. or perhaps by their insurance companies (more on the latter below). That said, I did see some anecdotal evidence about one person who was diagnosed with Carcinoid Syndrome despite the lack of any evidence of tumours or their markers. This might just be a case of providing a clinical diagnosis in order to justify somatostatin analogue treatment but it does seem unusual given that scientifically speaking, Carcinoid Syndrome can only be caused by a Carcinoid Tumour (just Carcinoid types, not all NETs).

I have a little bit of experience with this confusion and it still annoys me today.  Shortly after my diagnosis, I had to fill out an online form for my health insurance.  The drop down menu did not have an entry for Neuroendocrine ‘anything’ but I spotted Carcinoid only to find it was actually Carcinoid Syndrome.  By this stage I had passed the first level of NET knowledge and was therefore suspicious of the insurance company list.  I called them and they said it was a recognised condition and I should not worry.  Whilst that statement might be correct, I did tell them it was not a cancer per se but an accompanying syndrome caused by the cancer. I added that I was concerned about my eligibility for cancer cover treatment and didn’t want to put an incorrect statement on the online form. However, they persisted and assured me it would be fine on that selection.  On the basis it was really the only option I could select, I selected and submitted.  I did get my cover sorted.  However, it’s now clear to me that their database was totally out of date.  A similar thing happened when I was prescribed Octreotide and then Lanreotide, the only ‘treatment type’ they could find on their database was ‘chemotherapy‘ – again their system was out of date.  I’m told by someone in the know, that individual insurance companies are not responsible for this list, they all get it from a central place  – I’d love to pay that central place a visit!

I quickly thought about all the other NET Syndromes for their ‘chicken and egg’ status! Pancreatic NET (pNET) Syndromes must all be ‘chicken’ given the tumour definition and the secretion of the offending hormones that cause these other syndromes e.g. Insulin, Gastrin, Glucagon, Pancreatic Polypeptide (PP), Vasoactive Intestinal Peptide (VIP) and Somatostatin, etc. Even the more complex and obscure types including (but not limited to) Multiple Endocrine Neoplasia (MEN), Cushing’s and Zollinger-Ellinson Syndrome (ZES) are all related to a variety of neoplasia, tumours, hyperplasia and adenomas.  The NETs are still the chicken!

 

Thanks for listening

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts


7 Comments

  1. Diane mazejka says:

    Thank you again for another interesting and informative blog! I so appreciate you sharing your research with all of us who need encouragement and information. My son is going into his third year since diagnosis, and gets the monthly injection. Things have remained stable. Boring appointments are good appointments for us!

    Liked by 1 person

  2. SharLar6074 says:

    Good one again Ronny!

    Liked by 1 person

  3. Gaynor Miles says:

    Brilliant blog but Ronny how do you find the time to research and write all this.

    Liked by 1 person

  4. edebock says:

    Very interesting! Maybe we need to adopt the chicken as our symbol instead of the zebra. (Just kidding, of course!)

    Liked by 1 person

Thanks for the comment, make sure you have ticked the box to receive notifications of responses

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog Stats

  • 352,464 hits

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 9,569 other followers

Recent Posts

Please endorse me for the 2017 WEGO Awards

https://awards.wegohealth.com/nominees/_NgiA-uLYqGOMmvDHo7mHQkhzCdEINov32eUdlbwg3Q/endorsements/new

%d bloggers like this: