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 and my large internet footprint leads them to me. These are some of my most difficult 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 different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. 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.
With most, their frustration is almost palpable, despite it being over a virtual internet link, often thousands of miles from where I’m sat. in fact some are so frustrated that they just want a diagnosis of something even if that something is really bad.
If you wanted a classic example of a long, painful and frustrating diagnosis of a Neuroendocrine Cancer case, look no further than this one. Published on 30th Oct 2019 in the New York Times Magazine, this is a Pheochromocytoma case, a type of Neuroendocrine Cancer of the adrenal gland, very complex, associated with many day to day conditions; and very difficult to diagnose. It’s the motivation for this article and the article headline “Please find something wrong with me”. Read the story by clicking here. (you may need a free subscription but it takes seconds)
I’m always reluctant to allow undiagnosed people to join my private group where the main aims are to provide support to diagnosed NET patients and their primary supporters. I know some NET groups don’t allow anyone to join who doesn’t have an official diagnosis of Neuroendocrine Cancer. Because of stories such as the one above, I always try to contact undiagnosed applicants and if they are willing to talk with me. I attempt to explain 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 because many of them have gone through a difficult diagnosis themselves. But … this can often have the adverse effect of pushing them into believing they MUST have Neuroendocrine Cancer. This could have the effect of diverting their own research into differential diagnoses of their symptoms. I tend to remind them that many of the symptoms found in Neuroendocrine Cancer are extremely prevalent in many other diseases. It always 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. However, sometimes I just get a gut feeling about someone based on the many stories I have heard and I really want to help. It’s not easy though and these are time consuming discussions. One thing I am very confident about – there are many undiagnosed people on NET Patient support groups who do not have NETs.
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 tumor, 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.
How to convince doctors to listen
I once wrote an article for Diagnosed NET Patients suggesting 10 Questions to ask their doctor. I think this empowers patients but also indicates the patient has some knowledge. One of the aims of this artilce is 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. It’s great if someone can manage to get in front of a NET Specialist (see link above) but worth noting that some do not accept undiagnosed patients. Nonetheless, it can be useful to know the best tools to diagnose NETs when sitting in front of any doctor. 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.
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 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.
I also wouldn’t say that a negative to all the questions below will mean you definitely 100% 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’. I’m also a believer in the term “if your doctors don’t suspect something, they won’t detect anything”. What do I mean by that? Well, sometimes a patient can say things in a certain way, patients can provide evidence via symptom diaries and having knowledge of the differential diagnoses that might present can often lead to further checks (or at least thoughts or suspicions) to determine ‘something’. I’m also a believer in the term “if you can see it, you can detect it” and so getting beyond the hurdle of convincing a medical professional that a scan is something that can lead to the answer. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose. Any doctors would at least think to check some of these. If you don’t get past this hurdle, try a second doctor. This terrible sign from a doctor’s surgery is not usual but an example of the push back sick patients sometimes see.
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 alterative 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. There are also nuclear scan options to confirm conventional imaging findings, often these can produce clues not evident on CT/MRI. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation. 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.
Good luck in your diagnosis of ‘something’
Thanks for reading