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Carcinoid – misnomer or misunderstood?

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carcinoid-tumour_342x198_M1320462Recently, there’s been a debate on forums regarding the validity of the term ‘Carcinoid’.  I thought I’d gather my thoughts and put to paper. Although the issue is potentially complex , there is one really simple way of looking at it – Carcinoid is a type of Neuroendocrine Tumour (NET) and you will find that classification in dozens of booklets and websites internationally. However, like anything in the world of ‘Neuroendocrine Tumours’, it would be too easy to leave it there.

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, 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 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 result in carcinoid syndrome. 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 will kill people. Check out my blog post “Benign vs Malignant”.

Siegfried Oberndorfer

Siegfried Oberndorfer

I’m not a medical professional or scientist and as a consequence I’ve confined my research to a few reputable sites so that I stick to facts. However, 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).

According to A Review of Carcinoid Cancer written by Dr. Richard Warner, “…..they were found to arise from enterochromaffin cells (glandular endocrine-hormone producing cells) of the diffuse Neuroendocrine System.  These cells are widely distributed in the body but found in greatest amounts in the small intestine and then in decreasing frequency in the appendix, rectum, lung, pancreas and very rarely in the ovaries, testes, liver, bile ducts and other locations. These cells have special peculiar features that make them identifiable under the microscope. They stain in a special way when put in contact with silver containing chemicals. Special stains for the particular hormones that enterochromaffin cells can make will identify the hormone substances in carcinoid tumor cells and thereby confirm the diagnosis of the microscopic exam on biopsied carcinoid tumors.” Dr Warner goes on to describe them as “midway between carcinomas (cancers) and adenomas (benign tumors) adding that if overgrowth is somewhat limited and does not spread to other areas or threaten to squeeze out or replace adjacent structures, it is considered to be a benign tumor, that is, not life threatening. However, if the growth is more aggressive and threatens surrounding tissues or sends “seedlings” (metastases) to grow in distant areas then it has potential to be fatal and is considered malignant; that means it is a cancer.”

The American Cancer Society (ACS) describes them as “…..Like most cells in the body, GI tract neuroendocrine cells sometimes go through certain changes that cause them to grow too much and form tumors. These tumors are known as neuroendocrine tumors (NET) and neuroendocrine cancers. In the past, most abnormal growths of neuroendocrine cells were called carcinoids. But in 2000, the World Health Organization (WHO) reclassified carcinoids as neuroendocrine tumors and neuroendocrine cancers. Neuroendocrine tumors are growths that look benign but that might possibly spread to other parts of the body. Neuroendocrine cancers are abnormal growths of neuroendocrine cells which can spread to other parts of the body”. ACS goes on to say “Neuroendocrine cancers (also known as neuroendocrine carcinomas) are divided into groups based on the way the cells look under a microscope:

  • Well differentiated neuroendocrine cancers have cells that do not look very abnormal and are not multiplying rapidly. These tumors tend to be less aggressive, meaning that they tend to grow and spread slowly. Well differentiated neuroendocrine cancers can look identical to benign neuroendocrine tumors when examined under the microscope. Sometimes the only way to know for certain that a mass is a neuroendocrine cancer (and not a benign tumor) is when it spreads to other organs or tissues.
  • Poorly differentiated cancers have cells that look very abnormal and are multiplying more rapidly. Poorly differentiated cancers tend to be more aggressive, meaning that they grow and spread quicker”

Other sites (including NANETS and ENETS) refer to the WHO classification 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“.  It’s important to understand the difference between grade (aggressiveness) and differentiation (the extent to which the neoplastic cells resemble their non-neoplastic counterparts). Well differentiated tends to align to Grades 1 and 2  and recently in 2017, Grade 3a. Grade 3b is aligned with poorly differentiated.  An understanding of Stages and Grades is really fundamental to understanding Neuroendocrine Tumours (READ HERE)

At the crux of the issue is the fact that Carcinoid’s credibility in the cancer world is perhaps underrated due to the legacy medical definition of Carcinoid as ‘Carcimoma like‘, inferring not a ‘proper cancer’.  In addition, there is a tendancy by some to use the term Carcinoid and Neuroendocrine Tumours interchangeably which is clearly incorrect. Use of the term “Carcinoid and Neuroendocrine Tumors” as a grouping of cancers in USA, Canada, India and Singapore isn’t helpful either.

I believe that the term Carcinoid is a misnomer when you consider the large amount of malignancies experienced by Neuroendocrine Tumour patients and today’s researching has cemented that view. The historical meaning (i.e. the misunderstanding) of the term ‘Carcinoid’ does not help. The term does not adequately convey the potential for malignant behaviour that accompanies many of these neoplasms (i.e many patients present with metastasis confirming their propensity to spread).  Like any suspect growth found anywhere in the anatomy, some are found to be benign (not cancerous) and some are found to be malignant (cancerous).  In my humble patient opinion, if cells grow and multiply out of control and have the potential to spread; or have spread – that is cancer. Consequently, ‘Neuroendocrine Cancer’ sounds good to me thus the name of my blog.

I believe we do need to get rid of the term Carcinoid BUT …… new nomenclature to describe what was the original histopathological grouping called ‘carcinoid tumours’ in their various anatomical locations are required as there will still be a need to distinguish those from other types of NETs. For example, when someone wants to know the specific type of NET you have, you can’t just say “NET”.  Foregut, midgut and hindgut does not drill down deep enough for understanding.  Prefixing your net with an anatomical location sounds feasible, although it does split up pre-defined biological groupings spread across foregut/midgut/hindgut.

However, when someone wants to know which syndrome you have, you can’t just say “small intestine syndrome” or “midgut syndrome”.  ‘NET Syndrome’ doesn’t work either as there are several NET syndromes.  And of course someone of influence in the medical world needs to come up with suitable and widely accepted terms for ‘Carcinoid Syndrome’, ‘Carcinoid Heart Disease’ and ‘Carcinoid Crisis’. Leaving these terms in place is not a good idea.  It doesn’t help that many organisations continue to use the word ‘Carcinoid’ in their organisation titles.  It is also not helpful that many patients continue to refer to this disease as “Carcinoid  Neuroendocrine Tumour” or variations along these lines.

This needs to be resolved by senior physicians and advocate organisations in the NET Community.

Thanks for reading

Ronny Allan

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41 Comments

  1. Ed says:

    Ronny, thanks for pointing me to this post. Outstanding. I don’t know how I missed it. 🙂 Thanks!!!

    Liked by 1 person

  2. Kelly says:

    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.

    Like

    • ronnyallan says:

      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.

      Like

  3. dawn dodd says:

    If you have 2 suspected adenomas on adrenal gland are they called NET’S?

    Liked by 1 person

  4. ronnyallan says:

    Do you have a definitive diagnosis?

    Like

  5. Alex says:

    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)

    Liked by 1 person

  6. Irene says:

    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.

    Liked by 1 person

  7. edebock says:

    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!

    Liked by 1 person

    • ronnyallan says:

      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?

      Like

  8. […] Carcinoid – misnomer or misunderstood? April 22, 2015 […]

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  9. Holly says:

    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

    Liked by 1 person

    • ronnyallan says:

      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”

      Like

      • Holly says:

        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.

        Liked by 1 person

  10. 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)

    Liked by 1 person

    • ronnyallan says:

      Thank you for reblogging, it’s really important to create awareness.

      Liked by 1 person

    • Christine says:

      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.

      Like

      • 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 💖

        Like

  11. 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.

    Liked by 1 person

    • ronnyallan says:

      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 ☺

      Like

  12. Ed Robinson says:

    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

    Like

    • ronnyallan says:

      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

      Like

    • Christine says:

      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

      Liked by 1 person

  13. Lorelyn Leisure says:

    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. 🙂

    Liked by 1 person

    • ronnyallan says:

      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!

      Like

    • ronnyallan says:

      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.

      Like

    • Christine says:

      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

      Like

      • ronnyallan says:

        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.

        Like

  14. Lorelyn Leisure says:

    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

    Liked by 1 person

    • ronnyallan says:

      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.

      Like

  15. susanna2661 says:

    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.

    Liked by 1 person

  16. ronnyallan says:

    Thank you Brigitte. I hope it isn’t a zebra tattoo – the incidence is rising fast! 🙂

    Like

  17. Brigitte says:

    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.

    Liked by 1 person

  18. Cerys Webber says:

    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.’

    Liked by 1 person

    • ronnyallan says:

      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?

      Like

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