Subscribe to Blog via Email
Neuroendocrine Cancer is one of a number of “difficult to diagnose” conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don’t even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It’s a very sneaky type of cancer and if left too long it can be life threatening – Click here to find out why.
The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate. It’s not only a sneaky type of cancer but it’s also very complex. It’s a heterogeneous group of malignancies with a varied and confusing histology and nomenclature to match. As I said above, many people are asymptomatic for years whilst the tumour grows, and some might say that it’s somewhat ‘lucky’ to have symptoms to help aid a diagnosis. Many find that a lack of knowledge of Neuroendocrine Cancer in primary care, doesn’t always produce results. Common misdiagnoses include (but not limited to), Irritable Bowel Syndrome (IBS) and other common digestive diseases, menopause, appendicitis, hypertension, gastritis, asthma. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care if a referral for ‘something‘ can be achieved.
……..cue internet searches (Dr Google)
I think the rise and the power of the internet and rise of social media applications is very much helping generate awareness and knowledge of Neuroendocrine Cancer and those looking for a diagnosis may find help in this way. I suspect this instant access to information has played its part in the diagnostic improvements I mentioned above. Take my own efforts for example, I’m a wee Scottish guy with a computer and I’m already accelerating towards 2 million blog views – there’s clearly a market for what I produce. In terms of those looking for a diagnosis, if only one gets an earlier diagnosis due to my site, I’ll be happy.
Unfortunately, the internet can often be a minefield and in many cases, can lead to quite unnecessary worry for those looking for a solution.
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes. These are some of my most tough questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the diverse types of Neuroendocrine Cancer, knowledge of the best scans, tumour markers, hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer.
Many have already had multiple doctor’s appointments and tests. If they have not yet had a scan or endoscopy if appropriate, I encourage them to try to get one ‘by hook or by crook‘. Despite what you read on patient forums and surveys, the vast majority of Neuroendocrine Cancer diagnoses will be triggered by a conventional imaging such as CT and/or MRI. If you can see it, you can detect it. And if an internal camera can be used to look where appropriate, that can often produce results.
When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again confirming the power of the internet and the savvy ‘internet patient’. This is fine if you look in the right places of course – for certain things there are more wrong places on the internet than right ones.
If I have time, I’m happy to chat with these people, some are very frustrated – in fact some are so frustrated that they just want a diagnosis of something even if that something is bad. Some are not showing anything on any scan but in certain cases, it can be likened to finding a needle in a haystack.
What do you say to someone who is utterly convinced they have Neuroendocrine Cancer but CT/MRI/Octreoscan/Ga68 PET are all clear, Chromogranin A and 5HIAA are in range but they still say they have (say) diarrhea with its potential for literally thousands of differential diagnoses. It’s a tough gig.
My scan came back normal. That should be good news. But, if there is no tumour, how can I be suffering from all the symptoms of carcinoid syndrome? Is that diagnosis wrong? Are the urine and blood test results wrong? I’m awaiting a MRI scan to take another look to see if the doctor can find anything. I don’t know what they’ll find. I don’t want them to find anything. But I’m afraid of what will happen if they don’t.
I always let the undiagnosed know that Neuroendocrine Cancer patients are some of the most friendliest and helpful people you can meet, they will treat you as one of their own. There will be a number of diagnosed people online who have gone through what the undiagnosed are going through, so they will both sympathise and emphasise. But … this can often have the adverse effect of pushing them into believing they must have Neuroendocrine Cancer. This makes for interesting discussions given the number of people who automatically assume that ‘flushing’ or ‘diarrhea’ (as described by the undiagnosed) must be Neuroendocrine Cancer without any reference to the many differential diagnoses and the context of what that actually means in Neuroendocrine Cancer terms. I have my own patient support group on Facebook but with very few exceptions, I’m only keen to allow those who are formally diagnosed.
I once authored an article for DIAGNOSED NET Patients suggesting 10 Questions to ask their doctor. So, I wanted to take a step back in context, using the knowledge I now have, and put myself in the shoes of someone who thinks they may have Neuroendocrine Cancer but is not yet diagnosed.
Key questions to ask your doctor/specialist for those trying to confirm or discount Neuroendocrine Cancer
Dear undiagnosed people. I totally understand your fear. There’s nothing worse than being ill and not knowing what illness you have. I’ve therefore compiled a list of 3 key questions for you to ask – think of it as a tick list of things to ask your doctor to do or check. I have linked several background articles for you to prepare your case. However, I cannot promise your doctor will agree or take any action, in fact some might be annoyed about the lack of trust. However, doing your homework really helps, including diaries and other evidence.
I also wouldn’t say that a negative to all the questions will mean you do not have Neuroendocrine Cancer but at least these questions might provide your doctor and yourself with some food for thought, perhaps leading to the diagnosis of ‘something’. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose.
Questions for the UNDIAGNOSED to ask their treating physician
“I think I might have a type of cancer known as Neuroendocrine Cancer or Neuroendocrine Tumours (NET) because <<< insert your own story>>>. Would you please consider the following tests and checks:”
1. Chromogranin A (CgA) is a marker which is quite sensitive for Neuroendocrine Tumours, essentially measuring tumour bulk potentially indicating the presence of Neuroendocrine Tumours. There can be other reasons for an elevated CgA figure, including the patient’s use of proton pump inhibitors (PPI) (see the article for an alternative test where this is the case). Read more here – Neuroendocrine Cancer – Tumour and Hormone Marker tests.
2. 5HIAA is a hormone marker for the most common type of NET, particularly if the patient is presenting with flushing and diarrhea. Many NETs have associated syndromes and hormone markers can be a guide to help with diagnostics. Read more about 5HIAA and other hormone markers for different types of NET and different syndromes here Neuroendocrine Cancer – Tumour and Hormone Marker tests.
3. Scans. Most NETs can be seen on a CT scan although liver metastasis can often show more clearly on an MRI (and on CT dual or triple phase is important due to the hypervascularity of NETs). There are also nuclear scan options to confirm conventional imaging findings. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation (stomach/Duodenal/Pancreatic (endoscopic ultrasound) and rectal/colon via colonoscopy. In some cases, nuclear scans will find things that conventional imaging cannot because radionuclides can normally pick-up oversecreting tumours. Read more in my article “If you can see it, you can detect it“.
You can hear two NET specialists talking about the issues surrounding the diagnostics here.
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.
I’m also active on Facebook. Like this page.
I’m also active on this Facebook page. Follow this page.
Also like this awareness page on Facebook.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Like my new awareness page – click here or on the photo. (Like rather than follow please!)
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
A spotlight on Chromogranin A
What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might
Neuroendocrine Cancer: Catch them early, not late!
Diagnosing Neuroendocrine Neoplasms (NENs). It’s no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can
A spotlight on Rectal Neuroendocrine Neoplasms
What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types
Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus)
A new clinical trial post. What is Terbium-161 (161Tb-DOTA-LM3) (Beta plus). Terbium-161 is a radioactive substance. DOTA-LM3 is a novel somatostatin antagonist targeted using somatostatin
Repeat after me: Maria Menounos has Neuroendocrine Cancer
Like many people from outside USA, I don’t really know anything about Maria Menounos. For those in the same boat, let me confirm she is
Summary of April 2023 on RonnyAllan.NET
Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary
A spotlight on 5-HIAA
Background. It’s important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type.
The NET Detectives
The NET Detectives is an awareness post. Detecting NETs In general, it’s probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some
Low FODMAPs – The NET Effect
Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either
3 thoughts on “Neuroendocrine Cancer: Diagnosing the Undiagnosed”
Thank you so much for this wonderful post! I have read your site and read your site, searching and seeking information. I am one of the ‘undiagnosed’ and it is a tough, tough spot to be in. I have spoken with some of the top doctors in the country, and everyone is still scratching heads. It is such an intense feeling to be under such scrutiny, to feel so miserable, and still not have answers. You described with such eloquence the feeling of wanting SOMETHING to be found. I would love to have it not be a NET, but I think many of us just want some kind of answer! In my case, I have had elevated CgA results. I have had extremely high 5-HIAA results, both urine and plasma, and I have also had normal 5-HIAA results. I have had scans that did not ‘light up’ ( and have had enough scans to glow in the dark). I have symptoms relieved by Octreotide, and I have stumped doctors. They do not know what to make of any of it. Thank you thank you for the post, though!! Information really is power!
Another incredibly useful and easy to understand post. I continue to be grateful and indebted to you Ronny! My only problems were GI bleeds – otherwise, I felt great. Regular at the gym and healthy vegetarian.
My first bleed was in 2011 (needed a transfusion, had scopes and camera used – found nothing-felt it was caused by the baby aspirin I was taking). Next GI bleed 2017 (same scopes – felt Plavix was to blame – I was taking it for a heart attack I had two months earlier). Third bleed Aug 2018 – needed two transfusions and double balloon scope found problem area. NET tumors that formed in the walls of my small intestine had created ulcers that were bleeding. Removed 105 cm of small intestine. I went to my follow-up meeting taking Ronny’s 10 questions to ask and knowledge I gained from his postings. Results were grade 2, stage 4 NET (already spread to my liver). Doctor felt they had been developing from at least 2011. Since there isn’t a NET specialist in my state, I’m flying next week to meet with one in another state. Unable to schedule a Gallium scan as of yet. Thanks to Ronny’s posts, online forums and extremely kind, helpful fellow people I have met through online NET forums, I feel empowered and know much more about NET (which I never heard of until I was diagnosed). Again, thank you Ronny!
thanks for the comprehensive comment and I wish you well for your appointment next week, please do let me know how you get on?