(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.