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.
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.
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)