Do we need a new model for Carcinoid Crisis in NETs?

(so called) Carcinoid Crisis is one thing that tends to raise concerns in patients and has been bubbling away in NET centres and in patient communities for many years.  One of the big problems I have found is trying to place boundaries on it in terms of which types of NET does it apply to.  My thinking was that surely it only applies to those tumours which were once described by that ancient misnomer “carcinoid” and yet you hear patients who clearly do not have a tumour that was once described as “carcinoid” talk about it, at least in terms of protection against it. Perhaps some of the confusion lies with the ancient misnomer term, another reason why we need to get rid of it.  

Many texts I read describe it as “hemodynamic instability” or sometimes enhanced to “cardiopulmonary hemodynamic instability”, a dangerous change in blood pressure, heart rate, and breathing.  In the study which I write about below, it was described as “a sudden and significant change in hemodynamic parameters without another attributable cause like blood loss, compression of the inferior vena cava, or insufficient intravenous fluid resuscitation”.  Of course, anaesthetists and surgeons see this a lot because it happens in surgical operations where anaesthesia is used, i.e. the issue, in general terms, is not confined to NETs (you only have to watch medical dramas on TV to know this).  The current difference with NETs is the perioperative use of octreotide prior to and during operations (but see the study below which challenges the efficacy of this approach).

There’s also limited advice and a lack of problem bounding in the case of minor surgical operations/procedures (including non-NET) and the use of anaesthesia in dental procedures.  As a consequence of the lack of boundaries around the problem and variances in the protocols that exist, there tends to be a risk averse approach by both physicians and patients, “just to make sure”.  In my own experience, as a metastatic small intestine NET diagnosed with carcinoid syndrome, I had to undergo perioperative preparation on several occasions.  However, since diagnosis, I have had a surgical procedure without perioperative octreotide, using general anaesthesia for a non-NET issue. I’ve also had low dose epinephrine at the dentist several times. That said, in all of these instances, I was non-syndromic with normal 5HIAA levels. 

Before you commence reading about this study, I wanted to confirm that carcinoid crisis is not the same issue that is a risk for the catecholamine secreting Pheochromocytomas and Paragangliomas.

Do we need a new model for carcinoid crisis?

A new study from a very well-known and respected NET surgeon (et al) now suggests that perioperative octreotide does not make any difference and should be discontinued adding that it is “not the correct treatment”.  He also stated, “we need a new model for carcinoid crisis” (hopefully including a name that does not have the ancient misnomer word “carcinoid” in it). 

I don’t want you to shoot the messenger, so I’ve produced the documents and videos from the recent NANETS 2021 conference where you can see for yourself.   

Firstly, a couple of spoiler alerts that do help to build some of the missing boundaries around the problem; Dr Pommier said that patients with “dramatically higher circulating serotonin” were at greater risk of a crisis situation (which he described as a type of distributive shock) and post-operative complications.  But he also said that it was not caused by the release of NET hormones during surgery, thus why he went on to justify why perioperative or prophylactic octreotide is not the correct treatment for carcinoid crisis. 

He also added that further studies were required.  Nothing in the current protocols will change for now. 

A prospective study of carcinoid crisis with no perioperative octreotide – PubMed (nih.gov)

Conclusion: Completely eliminating perioperative octreotide resulted in neither increased rate nor duration compared with previous studies using octreotide. We conclude perioperative octreotide use may be safely stopped, owing to inefficacy, though the need for an effective medication is clear given continued higher rates of complications.

Read a nice summary from Onc Live here

The 3 minute video below is given by a very well known and very experienced NET surgeon, Dr Rodney Pommier, talking about the study and its findings.  I personally found them fascinating and ground-breaking. 

Overview of the Results of Treating Carcinoid Crisis Without Perioperative Octreotide 

Summary

This is a ground-breaking study because it turns on its head what we think about the causes of carcinoid crisis and the treatment to prevent and suppress it. It was also good to see some input by another surgeon on twitter whose opinions I appreciate who said of the study “A great demonstration of how some old approaches are engrained in our practices based on (outdated) expert opinions and ought to be challenged” and “These data are practice-changing!“. 

I am looking forward to seeing how it plays out and I hope future studies will provide more boundaries about who is at risk (types of NET, stages, grades etc) and cover the protocols (if any) for minor procedures including dental.  

I once again emphasise – nothing in the current protocols will change for now, there is no consensus yet. 

Author’s notes:  This is possibly a controversial conclusion in some circles and it’s worth pointing out that so-called ‘carcinoid crisis’ isn’t going away, just the need for time-consuming and expensive, and apparently ineffective according to the study, perioperative protection.  And the study also noted that medication to treat complications was still required.  I don’t believe we should immediately dismiss this conclusion as one of the authors is a ‘big hitter’ NET Specialist surgeon (Dr Rodney Pommier) whose job is to keep patients safe on the operating table.

However, it’s the second suggestion I’ve read about this need in as many months, the other came from Mayo Radiology (via Dr Thor Halfdanarson) in relation to percutaneous liver biopsies. I think what it also says is that the so-called carcinoid crisis isn’t as much of a risk as we have been led to believe. But that’s only an opinion (….. but now backed up by 2 studies).

For those interested in the Mayo Radiology study which is a paid article – for patients, the abstract will be sufficient. 

Citng info:  Samuel Jang, John J. Schmitz, Thomas D. Atwell, Tasha L. Welch, Brian T. Welch, Timothy J. Hobday, Daniel A. Adamo, Michael R. Moynagh, Percutaneous Image-Guided Core Needle Biopsy of Neuroendocrine Tumors: How Common Is Intraprocedural Carcinoid Crisis? Journal of Vascular and Interventional Radiology, Volume 32, Issue 5, 2021, Pages 745-751, ISSN 1051-443, https://doi.org/10.1016/j.jvir.2021.01.264(https://www.sciencedirect.com/science/article/pii/S1051044321002839)

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 or therapy does not constitute an endorsement of that service, trial 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.

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Ronny


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4 thoughts on “Do we need a new model for Carcinoid Crisis in NETs?

  • CACNETS (Capitol Area Carcinoid/Neuroendocrine Tumor Survivors), the support group of the Washington DC area (DC/MD and VA) just had another NET specialist speak to us this past Saturday (in honor of World Nets Day). He offered that he would continue using/recommending Octreotide pre-operatively and based on patient request at this time. He sees not harm in using that drug while it could be helpful. A couple of audience participants described unfortunate BP issues in surgeries without Octreotide and our speaker stated that he felt more studies need to be done to change the protocol of octreoide use for NET patients, especially those with known “Carcinoid” crisis experiences.
    And I agree that we need a name change for that phenomenon!

    • thank you, I know some people will have difficulty accepting the findings but I do believe Pommier knows what he’s talking about but I’m just the messenger. As I said in the article, until there’s a consensus via larger studies, it’s business as usual.

  • Anne dabbs

    Good, broad coverage of this recent developing change of thinking, Ronny. Thank you. Just days after the NANETS meeting ended, I participated in a zoom meeting in which this presentation was discussed by other specialists who had attended the NANETS conference. They, too, emphasized that this was an indication of procedures to be reviewed and also elaborated on the hormones which can be over secreted by tumors in a “non-carcinoid” primary location. Their comments and opinions gave hope to the renaming and better understanding of a carcinoid crisis.

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