Translate
Subscribe to Blog via Email
Ronny Allan
OPINION
There’s a constant debate regarding the validity of the term ‘Carcinoid‘. I’ve posted about this a few times and as far as I know, the debate has been raging for some years.
EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word “carcinoid” is now a choice – the WHO Lung Committee bottled it. I made my choice some years ago, I hope others follow suit. Read more about changes to Lung NEN by clicking here.
EDIT APRIL 2020. The latest classification system for Neuroendocrine Neoplasms confirms the word “carcinoid” no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) – read more – click here
Edit May 2020. So, what about other areas not included in GEPNETs above? Please note there are still loose ends in some of the blue books, particularly Urinary and Female Reproductive Organs. Hopefully, these blue books will be updated in the same way as the others for Neuroendocrine Neoplasms (or will be subsumed into the proposed Neuroendocrine blue book). But in the meantime, experts are proposing the nomenclature above be extended in advance of the blue book updates – this is covered in Neuroendocrine neoplasm update: toward universal nomenclature, © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani. What this effectively means is that the term “carcinoid” is now effectively totally defunct other than the loose ends of Carcinoid Syndrome, Carcinoid Heart Disease and Carcinoid Crisis (problems I could resolve in 10 minutes if they would listen to me). Also, see Staging and Grading.
You may have noticed that ‘Carcinoid’ is often used as a standalone word and tends not to be suffixed with the word ‘Cancer’ or ‘Tumour’ – unlike Bowel Cancer, Breast Cancer, Prostrate Cancer, Lung Cancer, Brain Tumour, etc. Nobody goes around saying “Breast” or “Bowel” do they? But they happily say “Carcinoid”. Unfortunately, the term ‘Carcinoid’ has become entrenched in both pathology and clinical literature over the past 100 years. The main problem with the word Carcinoid is that it means different things to different people. Some use the term almost exclusively to designate serotonin–producing tumours that arise from the enterochromaffin cells that can result in carcinoid syndrome i.e. most commonly in the appendix, small intestine, stomach, lung, rectum and uncommonly in other places. Some use it to (incorrectly) refer to all Neuroendocrine Tumours. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking and has the potential to kill people. Fortunately, NET specialists are starting to move away from using the word – check out several of the quotes below:
The Origins
The following history of ‘Carcinoid’ is well documented: Siegfried Oberndorfer (1876-1944) became the first to adequately characterise the nature of Carcinoid tumours and refer to them as “benign carcinomas.” During his tenure at the Pathological Institute of the University of Munich, Oberndorfer noted in 1907 that the lesions were distinct clinical entities and named them “karzinoide” (“carcinoma-like“), emphasizing in particular their benign features. However, In 1929 he amended his classification to include the possibility that these small tumours could be malignant and also metastasise. (Author’s note – a name change would have been handy at this point).
100 years later
NANETS, UKINETS and ENETS seem to defer to the WHO classification nomenclature and it is here another term is introduced – Neuroendocrine Neoplasms (NENs). NANETs state that “all of the entities under discussion are neoplastic, and neoplasm is therefore a more accurate term than tumor, which means only a mass“. These organisations tend to use the term Neoplasm as a catch-all for all Neuroendocrine disease and then the term ‘tumor’ and ‘carcinoma’ applies to well and poorly differentiated respectively. It’s worth noting that since 2010, the WHO classification is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential. Neuroendocrine Carcinoma is malignant by definition. All of this has been reinforced in the 2017 publication. The term ‘Carcinoid‘ is conspicuously missing from these texts and not before time. Ditto on the 2019 output.
To put it simply – the term ‘carcinoid’ is no longer credible
Due to its historical meaning, Carcinoid does not adequately convey the potential for malignant behaviour that accompanies many of these neoplasms as described above. The term Carcinoid decodes to ‘Carcinoma like’. Contextually “Carcinoid Cancer” decodes to “carcinoma like cancer” which is, of course, totally misleading and its use simply perpetuates the claim by some that it is ‘not a proper cancer’. If we only needed one reason to ditch the word ‘Carcinoid’, this would be it.
I mentioned confusion above and this has led to a hybrid effect of naming the condition. For example, there is a tendency by some (including medical establishments and patient organisations) to use the term ‘Carcinoid’ and ‘Neuroendocrine Tumors’ interchangeably which is patently incorrect. Neither is it helpful that many patients and organisations continue to refer to this disease using quite bizarre terms as “Carcinoid Neuroendocrine Tumor”, “Neuroendocrine Carcinoid Tumor”, “Neuroendocrine Carcinoid Cancer”, “Carcinoid/Neuroendocrine”, “CNET”; and many other variations along these lines. Many seemingly credible organisations will say “Carcinoid and Neuroendocrine Tumors” not realising it’s a contradiction in terms. Continued use of the term in any phrase or standalone context is not doing our case for recognition any good – it’s bad enough that some seem to cling to outdated and invalid diagnostic clichés and icons from the 1980s. All of it needs to go.
As you can see from the quotes above, I’m not alone in this thinking. Many big organisations and NET specialists are phasing out use of the word and NET Specialist organisations have changed their brand names to keep up to date.
Here’s a a recent quote by well known NET expert Dr Eric Liu, who hits the nail right on the head:
There’s an interesting article written by a NET specialist where the term ‘carcinoid’ is described as “unfortunate”, “misleading”, “outmoded”, “archaic”, “confusing” and “misnomer”. Exactly!
In the recent SEER NET study, a NET specialist reaffirmed this thinking by stating that “the belief these tumors did not metastasize, did not reach any great size, and appeared harmless, has since been proven false”. Continued use of the term ‘Carcinoid’ has the potential to regress this thinking. We must not let this happen.
So what terms should we be using?
People and organisations will be out of date with modern Neuroendocrine Neoplasms nomenclature and some will still want to continue with their own nomenclature (….. and because of the confusion, some will fall into both categories not realising they’re out of date). Here’s a classic example of the problem we face – the notoriously out of date American Cancer Society(ACS) does not even list Neuroendocrine Tumor as a cancer type. Instead, you can find “Gastrointestinal Carcinoid Tumors” and “Lung Carcinoid Tumor”. You’ll find Pancreatic NETs inside Pancreatic Cancer. Americans should harangue the ACS until they sort out this mess.
I could go on with many similar observations on seemingly respectable sites. I intentionally used a US example as this country appears to be way behind in the changes to NET nomenclature, pretty surprising as they tend to be at the forefront of many other aspects in the world of NETs. Come on US, reject this legacy misnomer.
One of the issues is that people are not applying the lastest nomenclature published by the World Health Organisation (WHO) classification for Neuroendocrine Neoplasms since 2016. They are divided into a number of chapters including ‘Endocrine Organs’, Digestive System, Lung Tumours….. and no doubt some others. Frustrating, but medical people tend to look at things in anatomical terms. Nonetheless, the agreed classification nomenclature for the whole group of Neuroendocrine Neoplasms can be found with some research and access to clinical publications. The correct nomenclature should then be flowed down in regional groupings, e.g. ENETS representing Europe, NANETS representing North America, etc. As I understand it, ENETS and UKINETS are already essentially aligned with WHO; and NANETS appears to be. From these organisations, the use of the correct terminology should then rub off on patients, patient advocate organisations, and general cancer sites. However, the biggest challenge will be with hospitals/medical centres, cancer registries and insurance companies whose medical record processing is run using reference data (think drop down selections and database structures) and they move at the speed of a slug in terms of website updates. Easier said than done but ‘change’ always has to start somewhere. Technically it has started (albeit late) as most of the big NET medical organisations are already starting to reduce the use of outmoded words such as ‘carcinoid’.
I once argued that the term ‘carcinoid’ needed to be retained as it represented a histopathological grouping of a particular type of NET comprising mostly appendiceal, stomach (gastric), rectal, small intestine and lung NETs. However, reading through the ENETS 2016 guidance in conjunction with the most up to date WHO classification publications, I’ve changed my mind after noticing they no longer use the word ‘Carcinoid’ in relation to a tumor type. Rather, they use the latest WHO terms above and then use the anatomy to distinguish the different types of NET (like we already do for Pancreatic NET or pNET).
Perhaps patients can lead the way here ………
Rather than say:
‘Carcinoid’ or ‘Carcinoid Tumor’….. why not say Neuroendocrine Tumor or NET (adding your primary location if required – see below);
‘Carcinoid Cancer; ….. why not say Neuroendocrine Cancer;
‘Lung Carcinoid’ ….. why not say Lung NET (adding typical or atypical if required);
‘Small intestine Carcinoid’, why not say Small Intestine NET (or ‘SiNET which is becoming popular); p.s. I’m not a fan of ‘small bowel’ due to the potential for confusion with the widely used term ‘bowel cancer’);
‘Gastric Carcinoid’, why not say Gastric NET (adding your type if required);
‘Rectal Carcinoid’, why not say Rectal NET;
‘Appendiceal Carcinoid’, why not say Appendiceal NET;
…. and so on. And you can add your stage and grade/differentiation for a richer picture.
You can listen to a very well-known NET Specialist say something similar in this video here.
Worth noting that even ENETS and NANETS cannot agree on tumor type terminology – the latter uses Small Bowel NETs (SBNETs) whereas ENETS uses Small Intestine NENs (SiNENs). I did say it’s easier said than done.
As I said above, the term ‘Carcinoid’ has become entrenched in both pathology and clinical literature over the past 100 years so it will still appear in many texts and need to be searchable online to support medical and advocacy business. However, these are technical issues, and I don’t therefore believe people need to use the terms to make them searchable online. I tag all my posts with ‘Carcinoid’ even if I don’t mention the word in my text. I have started only using the term for context when it is required and am currently reviewing all of my posts to ensure that is still the case.
Hang on…what about Carcinoid Syndrome
When someone wants to know which syndrome you have, you can’t just state (say) “small intestine syndrome” or “midgut syndrome”. ‘NET Syndrome’ doesn’t work either as there are several NET syndromes. This has led to the situation where people try to drop the word ‘carcinoid’ and just say “the syndrome” which is even more confusing! I accept this one is a difficult challenge but I don’t believe it’s insurmountable, just needs some willpower and agreement. I could come up with other terms in about 5 minutes.
What about Carcinoid Heart Disease
Personally I don’t see why this cannot be renamed to ‘Neuroendocrine Heart Disease’ or its technical name – ‘Hedinger syndrome’.
What about Carcinoid Crisis
World renowned NET specialists already make statements that these issues can apply to all types of NET; and it’s well-known that a similar crisis situation already applies to other types e.g. Pheochromocytomas. I cannot see why something along the lines of ‘Neuroendocrine Crisis’ or ‘NET Crisis’ would not be acceptable. The manufacturers of Lutathera have an interesting term documented as “Hormonal Crisis” which also has potential.
Summary
We as patients are unlikely to be able to force changes on the medical and insurance communities but we can be a ‘force for change’ by setting the example of using a correct and more apt terminology to describe our disease.
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.
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.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?
OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who
Colonoscopy Comedy
Last year I wrote a series of articles on the ‘coping’ side of cancer, one of which was about still being able to have a
Surgery – the gift that keeps on giving
I first wrote this article in December 2014. My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before
Piss off cancer, it’s 13 years since my liver surgery!
I’m still here I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no
Chocolate – the NET effect
I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice
A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive NETs
Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs – see author’s comments below)
A Review of March 2024 on RonnyAllan.NET
I’m thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing
From Whipple to Waikiki by Jerry Chezick. Surf’s up!
An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he
Diagnosed with Neuroendocrine Tumours: Hurry up and wait
When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts to your email.
I am so glad you pointed out about the American Cancer Society’s use of carcinoid based on location. The other day I was trying to find out about services they offered for NET patients and I could not find it listed. For me, their naming definitely does not work, as I am primary unknown with the syndrome. Thanks for the blog post.
Ronny, thanks for pointing me to this post. Outstanding. I don’t know how I missed it. 🙂 Thanks!!!
you also need this one ……. https://ronnyallan.wordpress.com/2016/02/25/carcinoid-whats-in-a-name/
I am just finding your blog and I am grateful for your research and accumulation of information. I am currently confused about my own situation. Things are happening so fast. In 2011 I had a 4 cm NET removed from my pancreas. I was able to keep the head. I was told I shouldn’t have to worry about it coming back. Lately, I have had symptoms just like I did in the past and my chromogranin levels are up. I met with an oncologist for the 1st time ever 2 weeks ago. He said no tumor is visible on my octreotide and CT scan but I am presenting symptoms of Nueroendocrine cancer. He said perhaps any tumors are too small to be detected but I am have the stomach issues, flushing, fatigue and other issues again and now pulmonary embolisms. I will start Lanreotide injections in a week. My insurance refuses to pay for the PET scan my doctor wants to do.
I am confused. Do I have cancer? Did having this cancer change my hormones permanently causing these hormones? What does it mean to have the symptoms again? You can imagine, I’m very afraid of going through the pain of pancreatic cancer again and worried that surviving twice may be too much to hope for.
I am researching looking for answers. Any input you have would be greatly appreciated.
Hi Kelly, sorry to hear about your issues and sorry for delay, I’ve been away for a few days. This sounds like a complex problem but one it is I’ve seen a few times. Personally, I think being told not to worry about it coming back without any surveillance doesn’t sound right to me. Were you treated by a NET specialist or at least a Pancreatic specialist? Did they biopsy your pancreas tail after removal and if so what was the grade or ki-67 score? If you don’t know this, I strongly recommend you ask.
When you say your chromogranin levels are up, are they way up, a little up or up but still within range? Did they do any other marker tests? It is not that common but I have read many stories about tumours not being visible on scans and yet people are experiencing the symptoms (pancreatic cancer including the Neuroendocrine variant are difficult!). In 2011, did they say what type of pNET you had (insulinoma etc) or was it just labelled non-functional? Pulmonary emboli is a strange one, was that a typo or did you definitely mean blood clots on your lungs? If so, hopefully they are treating you for that? I suspect your insurance needs a diagnosis for the PET scan (or was it Gallium 68?). The symptoms of NET Cancer and Pancreatic Cancer are similar in many ways and very vague or shared with regular illnesses. Thus why they are both difficult to diagnose and treat. It is possible that your symptoms are something else (even NET cancer patients get regular illnesses) but you will need to work with your doctor and advocate for yourself to get any resolution.
I suspect the Lanreotide is a precaution but a good one as it seems like the doctor is covering bases.
If you have 2 suspected adenomas on adrenal gland are they called NET’S?
Technically Dawn, as it only suspected, then it’s a bit awkward what to call it! But that’s only my daft logic 🙂 However this is an area of the anatomy which can be related to the NET group. There is also a MEN connection and a pheochromocytoma is also possible.
I have a post about Pheochromocytoma here. https://ronnyallan.com/2016/12/14/neuroendocrine-tumours-a-spotlight-on-pheochromocytomas-and-paragangliomas/
Do you have a definitive diagnosis?
I have recently gained a matching tattoo to Brigette’s (my first tattoo also 😆). I have been told by a number of doctors carcinoid is not cancer. Thankfully I’m now under a consultant who seems to understand my situation (I’m hoping!) and the type of cancer. hopefully just a check on my ‘tattoo’ in a couple of months and go from there….? I often try to ‘interpret’ what the dr is saying to me the reality is I think they are not sure and it’s a sort of wait and see how it works out type scenario. I follow your blog Ronny – thank you for giving clarity in a confusing situation (sometimes the only clarity I have)
Important to understand grade and stage in relation to NETS Alex.
happy to help Alex – can I use the following quote in my blog publicity “thank you for giving clarity in a confusing situation (sometimes the only clarity I have)” – I will only mention you as “Alex”. Thanks for supporting my blog – it means a lot to me!
Hi Ronny, Great article. The Docs T Christies still refer to my husband as having carcenoid syndrome cos of the multple lesions in his liver. When I speak to people I explain it as a rare form of cancer otherwise they think it is just a normal “illness”.Just to give you an update he was due to have his second liver embolisation today. However he collapsed in the admission suit and the crash team had to intervene. They thought it was a heart problem but turned out not to be though he has a damaged tricuspid due to the tumors. He was kept in for a few hours and is now home. The embolisation is now being rescheduled. Scary day but OK for now.
Thanks Irene. Sorry to hear about your husband, I hope he’s OK?
I agree, Ronny! In fact, I may just start referring to my cancer as Neuroendocrine Cancer! Believe it or not, I recently saw a locum at our local hospital about an unrelated health concern and he had the audacity to argue with me about whether or not I actually have cancer! He acknowledged that I have Neuroendocrine Tumours, but debated whether or not that meant that I had cancer! Carcinoid is also a confusing term. A friend, who is a lab technician, told me that carcinoid simply means cancerous. If there’s that much misunderstanding within the medical community, we really need to get the word out about this condition of ours!
it’s a topical subject on forums but it will be a while before we see change. The medical world needs to synchronise and of course there is naming problems of “Carcinoid Syndrome”, “Carcinoid Heart Disease” and so called “Carcinoid Crisis”. Carcinoid is difficult to explain but Neuroendocrine is more difficult! Try this blog: http://wp.me/p4AplF-Nb
Are you on my Facebook site?
Very informative and well written post. The only thing I hate about the term NET Cancer is it doesn’t make sense. Neuroendicrine Tumor Cancer? Maybe if the “tumor” part was removed. None of that matters, lol. Also, carcinoid Syndrome would then be…NET Syndrome?
BTW, I read this in my mind with a British accent. 😉 HaHa
yes Holly, it is a bit messy but if anything happens, some clever people will work it out 🙂 I get you on NET Cancer but this is something that has evolved informally through social media (i.e. NET Cancer Day etc). NET syndrome is probably a non starter as NETs is an umbrella term for a number of cancers and many have their own syndromes – I can point out a list of you want?
I always read things with a British accent 🙂 My wife and I are just back from USA where we were frequently told that our accents are ‘cute’ and loved “I love your accents”
No, I don’t need a list but thanks for the offer. It’s just interesting to me and I wonder what the name “Carcinoid Syndrome” will evolve into.
Reblogged this on To Be Honest… and commented:
To be honest…this is an excellent post about Carcinoid. I am a survivor of this cancer and it’s refreshing to see the awareness of this syndrome becoming more common. At the time I had to deal with this it was almost like it was unheard of, even by some of my doctors (Luckily not the specialists)
Thank you for reblogging, it’s really important to create awareness.
So true, especially for our “zebra”. It’s my pleasure 😊
It still is, I was classed as fit for work after because they did not know what my condition was! The locum GP had filled in a form for them saying there was nothing wrong with me; I was looking conditions up and saying I had them. He obviously didn’t know either. I had also only been out of hospital for a week after a bowel resection!
I have had to explain the condition six times when I have been admitted for treatment as the doctors, on the ward do not know what it is, each time it is a different Doctor, none of them have treated NET cancer before or even met anyone with it. This is why Ronnies site is so valuable, I can refer them here for a quick read of the supporting documents and to see others have it and my problems are the same as other sufferers. I am not making them up or imagining things. I then hope they go away and learn more.
I was released after a bowel resection too! Craziness! I couldn’t walk but off I went. My primary care physician promised me he’d “look it up” before the surgery! I’m so glad to see Ronnie’s blog out there. I can’t tell you how monstrous my ordeal was and I’m so sorry you had to go through it too! My hemicolectomy was in 2001 and its so discerning to see it’s still going on. God bless Christine. I hope you can find a great doc who’s more educated in NET Cancers 💖
Good article Ronnie, I don’t know enough about Carcinoid to comment properly, but is the term not really about neuroendocrine tumours where the origin is unknown? Other NETs will be cancer only if they have spread or become metastatic. Many NETs may be begin or undetermined until they spread or metastatise, hence are not cancer. Just to make it more complicated some will have multiple benign tumours. These people can therefore be in a sort of limbo in terms of support, employment law, insurance etc. This argument will no doubt go on for ever, which is why this awareness raising is so important. All of course are difficult to live with and some are life threatening. Hope that makes sense.
Yes Linda, it is complex. I think you just described as per Dr Warner’s paper and unknown primary is not necessarily something I would align only to carcinoid. I found a wide variety of contradicting descriptions of NET/Carcinoid on some very reputable cancer websites in USA and UK (disappointing).
I realised this would be contraversial but went ahead with it under the label of ‘only my view’. I get the important point of insurance etc, bit of a minefield I didn’t want to walk through. Thank you for taking the time to commentm this one will run for months. Thanks also for ‘Liking’ and therefore following my Facebook site, please let anyone else know who may be interested. I couldn’t help noticing a link to University of Dundee who I know may be involved in some research? Dundee is my home town ☺
Hi Ronny, not sure if my reply is in the right place here, I am not a big FB user. My late wife was diagnosed some 20 years ago with carcinoid tumours, found by a surgeon who managed to puncture her bowel during a routine colonoscopy. His comment was ‘ oh I found three carcinoid tumours , they have been removed but they are benign and nothing to worry about’ , a small resection was done. . Subsequently over the years she lived a pretty much normal life other than bouts of severe pain – put down to scar tissue from the first resection. More recently her pain levels increased , in and out of hospital for pain relief until eventually a doctor suggested a scan and that revealed NET’s although still called carcinoids. Ultimately she had major surgery some 5 years ago , followed by octreotide, sandostatin, scans etc but succumbed a year ago. We often thought that if it had been accurately diagnosed earlier and treated sooner she may well have had a better and easier life. So, thank you for your article and lets get the word out to more doctors and consultants !! Ed Robinson
Ed – so sorry to hear about your wife Ed. I don’t want anybody to die from this cancer and is one of the reasons why I do what I do, awareness awareness awareness, and not just in the patient population, but the medical profession too. Plus we need to literally make Neuroendocrine Cancer and it’s derivaties a household word to attract the resoruces we need to make a difference through research. Don’t get me wrong, there is some wonderful work going on beind the scenes and the introduction of somatostatin analogues has made a big difference and immunotherapy looks promising. We need a much wider audience than we have had hiterto. Feel free to share and share and thank you for your support. I also have a Facebook site here where you will find news and views not published on this blog site. If you ‘Like’ this page, you will be subscribed: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
Sorry to hear about your wife Ed, but by putting her story here you may just save someone elses life. Most people with this condition struggle on for years. When you read stories like yours it makes people to look for better treatment. Thank you
Hi Ronny,
Thanks for the info on the book, it is so frustrating trying to find things that are up to date and then so much of it can seem contradictory. I do have a Neuroendocrine cancer specialist, 2 in fact. One is a specialist on the surgical side of it all, who I’ll be seeing in June for her recommendations when she comes back from maternity leave. The oncologist who I am seeing now took the long route around sending me to other doctors who sent me to other doctors because the main symptom I appeared to have was facial swelling, an odd symptom. I was also flushing a lot, as I did with the primary tumor which was in the pancreas 5 years ago and the 1st liver tumor (this one is also in the liver). Of couse the flushing was attributed to menopause, until they tested me for that and found that I am not even in pre-menopause. That is one of the things I found odd about the diagnosis of non functioning because with each tumor I have had the classic symptoms of carcinoid syndrome. And yes before the 1st diagnosis I was treated for IBS for quite a while before the tumor was found by accident in a CT for something else.
BTW the octreotide scan is a nuclear body scan just for neuroendocrine cancers. They mix a radioactive substance with the octreotide and inject it, then since octreotide is made to only attach to the receptors of neuroendocrine cancer cells they do a scan 4 hours later to make sure its getting through your body and another 24 hours later when most of it has been eliminated, the tumors light right up because they have taken up the radioactive octreotide. This is done when a tumor is suspected but can’t be found on regular scans because it’s too small. The tiny ones don’t always show up, the accuracy is pretty good though. I was told there is a newer scan available in the States now that is even more sensitive but I don’t recall what it’s called. I would imagine it’s been used in Europe for a while already, as our government takes such a long time approving everything!
I’ll look into the book, thanks again. Hope you are doing well. 🙂
You are probably talking about Gallium 68 PET scan, still under trial in USA, available (limited) in Europe, I understand octreoscans, just now curious about functional vs non-functional pNETs which I need to read up on!
Lorelyn, are you on the US forum sites? There are quite a few but the main ones are:
Carcinoid Coffee Café (despite the name, they do talk all NETs…..) https://www.facebook.com/groups/163062837046205/
and Dr Liu’s Zebras. https://www.facebook.com/groups/402282629858283/
You have to join both and they have NET doctors who occasionally contribute. These forums can be scary for some but you sound like you’ve got your head round the researching side.
The other good feedback mechanism is the ACOR.Org which you can register for daily updates and input questions. The emails arrive in a slightly confusing layout ut you get used to it – some really good Q & A going on here. Again, despite the name (Carcinoid), they cover all NETs.
Let me know if you need any others – I have assumed you are USA.
I am wondering why you don’t have an Endocrine Consultant. They deal with purely hormonal problems. NET’s, Carcinoid, P.NET’S and all its multitude of descriptors, as pointed out by Ronny is an Endocrine Disease. I have had a surgeon and would get another one if needed. I have an Endocrine Specialist, I also have an Oncologist. My Oncologist an expert in cancer and its treatment, in my case it is radiotherapy. My Oncologist constantly consults with my Endocrine consultant as he is the expert in hormones. They also deal with things like thyroid problems but many are super specialists now and specialize only in Neuroendocrine disorders and all the different names they may be called.
Any treatment you get affects your hormones that is the purpose to stabilize your hormones and therefore your condition. My Oncologist reports my condition and any problems, if they emerge, to my Endocrine specialist when I am an in patient for Lutetium treatment. As a result of this sharing of knowledge my Lanreotide treatment was recently increased to three weeks, rather than four. My Oncologist said he would not do this increase until he discussed it with my Endocrine Consultant, as he said his knowledge of the area was far greater. It could even be your intolerance to the treatment was because you did not have a correct dosage because you do not have an Endocrine specialist. I was told my treatment may have to be altered, increased, reduced or even altered when I first started it but it was ok. I was lucky.
I don’t know where you live but there are specialist centres throughout the uk, I suspect most people would be within a hundred miles of one. I also know there are quite a number in the US. I may have misunderstood your situation but if you have not got an Endocrine Specialist I would strongly advise you to go and get one. I have also been through the multiple doctor bit and I got absolutely nowhere until I got an Endocrine specialist, he then sent me to the other consultants. He told me it was important to only use other consultants that had knowledge of NETS cancer. I would not be sent back to my original surgeon for this reason.
Good luck for the future and I hope you get all the answers and treatment you need sorted out. Best wishes
Christine
Christine raises a good point about endocrine consultants. Technically there should be one as standard on a classic NET Multi-disciplinary Team (MDT). The USA forums are always talking about endocrine specialists so I guess they are better served over there although it’s a different health system to UK (advantages and disadvantages).
In the UK, I’ve only ever been to one presentation where an Endocrine specialist was present delivering a lecture. I don’t think they are as well used as they appear to be in USA. All of that said, it appears I now have one on the basis they are still investigating my thyroid lesion and have been added to the Endocrine MDT in Bournemouth Hospital (not sure what this means yet!).
Just reading my “yellow book” and a common use of an Endocrinologist is to exclude conditions that can sometimes masquerade as NETs.
Thanks for your blog! funny how it applies to the questions I have. I just recently signed up when I came across your site somehow while doing extensive research to try to get my doctor to listen to me for the past 3 months.
I was diagnosed with Pancreatic Neuroendocrine Cancer (non-functioning) in the Spring of 2010 and had a liver metastasis removed 18 months later. Now last week after my regular MRI came back negative and all of the tests came back normal that the 7 other doctors I was sent to (because my weird symptoms “probably weren’t the cancer”) she finally scheduled an octreotide scan. What do you know, they found another tumor. It pays to be persistant, learn as much as you can, and to pay attention to your body. If I had just gone with the flow I’d still be being treated for angioedema and after my last MRI a week ago my check-ups were to go to 1 year intervals.
I am still befuddled by the carcinoid cancer or neuroendocrine cancer thing and issues related to that. I’m told it’s not exactly the same but similar. That’s the answer I was given when I asked “Are the symptoms from the hormones being released from the tumor in my liver carcinoid syndrome or something else?” I have the symptoms carcinoid syndrome and until they found out I couldn’t tolerate the long acting octreotide, I was supposed be treated with that but I can’t get an answer to the simple questions; is this carcinoid syndrome? Should I be aware of anything or do anything when it acts up severely? (and it does.) I am very frustrated. I feel that after 5 years I should know more specific info about my cancer and what to expect etc. Any suggestions about what questions to ask and how to ask the questions so I get real answers?
Thanks ~ Lori
where did they find the other tumour on octreoscan? did they ever ID the primary? Do you have any other illnesses? The big problem with NET Cancer is that the symptoms it produces and in particular the syndromes are in many instances similar to run of the mill issues we get from time to time or are like chronic illnesses such as IBS. With you having a non-functional tumour, makes it more difficult – for me I was flushing…… boom! You’re right about persistence, I always recommend a patient becomes his/her own advocate and learns learns learns. A great book is the ISI book on Neuroendocrine tumours which you can download as a PDF file but they will post one to you (even outside USA). The link is here: http://www.interscienceinstitute.com/docs/Neuroendocrine%20Tumors%20book%202012-14_REPRINT_PRESS.pdf To use a Brit term, this is a good toilet read (pun intended!). Check out chapters 1 and 3 to begin with. Tucked inside this book I have two other documents – Review of Carcinoid Cancer by Dr Warner (link is in this blog post) and Introduction to the Basic Science of Carcinoid by Dr Woltering (check out my blog titled same). Ignore the title (this is part of the problem I outlined in this blog) as they both talk about non functional pNETs. Both are mega experts. Both documents could probably do with an update but essentially they are great as they are with some interpretation. You say you have a non functional pNET which are a bugger to diagnose apparently. Check out pages 28-42 to see what they look for and tests. Interesting that an octreotide scan picked up a tumour…… Might be worth reading the bit about (foregut) carcnoids too pages 11-18. These might help narrow focus a bit for you and your physician. Don’t forget I’m not a doctor but happy to help you navigate around. However, you really should be looked after by a Neuroendocrine Tumour specialist or at least your physician should be prepared to consult one. CCG website has a list.
p.s. A carcinoid is a type of neuroendocrine tumour – it’s the name ‘carcinoid’ which is provocative to some people and not helping our case (in my opinion). Check out my Facebook site too and ‘Like’ the page to get updates not on this blog site: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
Let me know if you need any more info. I don’t know everything (nobody does) but I tend to know where to look.
Thank-you Ronnie for getting the word out about neuroendocrine cancer. I agree that the word carcinoid has given many in the medical community a false sense of the nature of this disease. It is a reminder of why a full accounting of history is so important.
Thank you for the feedback which inspires me to keep on keeping on 😊
Thank you Brigitte. I hope it isn’t a zebra tattoo – the incidence is rising fast! 🙂
Thanks for your blog, very informative. Lucky me, a well differentiated NET was found and removed in my rectum during a colonoscopy. I now have a tattoo in it’s place. I can attest that these surgeons have no sense of humour but I did get a picture of the tatoo, it being my first and all! Going back for my 6 months sygmoiscopy, then another 6 months colonoscopy and so forth for life. Keep up the great work, people need to know about this cancer.
Very clear and informative post – as always. But I did have to look up ‘neoplasm’. The definitions I found were variations on ‘An abnormal new growth of tissue.’
Thanks Cerys, I suspect a very technical reason for tumour vs neoplasm, but read the articles I refer to. Not 100% sure but perhaps neoplasm better conveys the scattergun effects of these tumours rather than just the effect of a single mass?