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Neuroendocrine cancer – a patient perspective



SOMETIMES when I’m searching for medical information, I’m presented with a pick-list of cancers which mostly tend to be anatomy based.  I don’t know about you, but I find it annoying when I cannot find my own cancer on the list. Some respectable organisations are just not as up to date as they should be! I can now totally understand why so many neuroendocrine tumour (NET) cancer patients have become their own patient advocates and why they have to shout quite loud for recognition and understanding.

One of the key facets of NET Cancer is that it is not tied to a particular part of the human anatomy. Ignorance of this fact can at best lead to misinformation and confusion about NET Cancer, but at worst, misdiagnosis and unnecessary treatment for something else (including a different type of cancer in the same location).

Take my own diagnosis phase. I had undergone CT scans, ultrasounds, and routine blood tests and when I looked at the radiology reports produced prior to diagnosis, there were mentions of  ‘peri-aortic lymphadenopathy’, ‘mass in the small bowel mesentery’, ‘multiple liver lesions’, ‘retro-peritoneal fibrosis’, ‘extensive lymphadenopathy consistent with lymphoma or metastatic adenocarcinoma’. You can see from the mostly generalised wording, there was some scope for confusion during my diagnostic phase.

When I met with the specialist who was initially looking at my case, he was explaining the results of the scans, but I was sensing he didn’t yet have a definitive diagnosis. Notwithstanding the results of a liver biopsy, which at that point had yet to be ordered, what was key in pointing to the correct diagnosis was my late admission to the specialist that I had been experiencing a mild and innocuous flushing sensation for several months.

I was lucky.

I could tell from his eyes that he’d clearly heard of this symptom in relation to a type of NET Cancer known as ‘carcinoid’ and he then correctly predicted the biopsy result. As this is a rare and complex type of cancer, I suspect the oncologist and pathologist were happy with the tip-off. I’m fairly certain my primary care was probably thinking ‘bowel cancer’ and the secondary care was probably suspecting the same right up until I mentioned ‘flushing’.

My flushing ‘revelation’ came after the first CT scan and the radiologists were in fact only reporting what they saw on the pictures. It is not their job to diagnose. In hindsight (but also in my opinion!), the scan results look typical of an advanced small intestinal NET.  From what I’ve since read, the lymphadenopathy and the mass in the mesentery appear to be in-keeping with advanced carcinoid tumour local and regional growth.  

A few month later
Fast forward a couple of months, I was told the fibrosis was a classic desmoplastic reaction to the secretion of excess hormones (serotonin) from the primary/mesenteric tumours. Despite the fibrotic tissue being found to be benign, I’m glad my surgeon had the foresight to get rid of what he could, as it was encircling my aorta and intravenous cava (IVC) almost occluding the latter. Low risk of a problem, but very high impact if the risk is realised – a classic risk management dilemma.

The key point I’m making here is that primary NET cancer or neuroendocrine tumours can appear almost anywhere in the body and one which originates in the intestines isn’t bowel or colon cancer. Similarly one which originates in the (say) pancreas, lung or thyroid, should not be confused with ‘core’ pancreatic, lung or thyroid cancers.

They are all histopathologically different cancers to NETs and the presentation, testing, treatment (curative or palliative) and prognosis can be very different. NET Cancers need NET specialist medical teams! Take the quite recent case in the news about a man who was told he had pancreatic cancer and would die within 10 months.

But a friend (a doctor) became curious as to why he wasn’t dead after 10 months and why he wasn’t even feeling ill — it was then discovered he had a NET, so he had a neuroendocrine, rather than exocrine based cancer of the pancreas. He subsequently had a major operation and is now reported to be cured.

Further reading
For a primer on NET Cancer, this high level booklet Your Guide to Neuroendocrine Tumours will explain the types of NET cancer, normal locations of primary and secondary tumours and in addition lists the most common symptoms and associated syndromes. Other booklets on the same site will go into more detail. There is also a significant library for newly diagnosed patients on the Carcinoid Cancer Foundation website.

For medical staff and patient advocates, a very good technical publication is available free: Neuroendocrine Tumours – A Comprehensive Guide to Diagnosis and Management (5th Edn).

Ronny Allan was diagnosed with incurable metastatic neuroendocrine cancer in July 2010 after presenting with weight loss, symptoms of iron deficiency and facial flushing (carcinoid syndrome)

Check out Ronny’s blog.

*This article represents Ronny’s own views and opinions and is strictly for educational or discussion purposes — it does not constitute professional medical advice, diagnosis, treatment, or care, and does not necessarily reflect the views or opinions of his medical team, Cancer Research UK, PLANETS Charity, NET Patient Foundation, Macmillan or any other organisation or person with whom he may be associated.

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