Sometimes when I’m searching for medical information, I’m presented with a ‘pick-list’ of cancers which tend to be anatomy based and I find it infuriating when I cannot find my own cancer on the list. Some respectable organisations are just not as up to date as they should be! One of the key facets of NET Cancer is that it is not tied into a particular part of the human anatomy. Ignorance of this fact can at best lead to misinformation and confusion about NET Cancer – at worst, misdiagnosis and unnecessary treatment for something else (including a different type of cancer in the same location). I can now totally understand why so many NET Cancer patients have become their own patient advocates and why they have to shout quite loud for recognition and understanding.
Take my own diagnosis phase, I had undergone CT scans, ultrasounds, and routine blood tests and when I look at the radiology reports produced prior to diagnosis, there were mentions of:
You can see from the mostly generalised wording, there was some scope for confusion during my diagnostic phase. When I met with the consultant looking at my case, he was explaining the results of the scans but I could sense 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 leading to the correct diagnosis was my admission to the consultant that I had been experiencing a mild and innocuous flushing sensation for several months. However, he literally had to drag this information out of me. I was lucky, I could tell from his eyes that he’d clearly heard of this 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.
My flushing ‘revelation’ came after the first CT scan and the radiologists were in fact only reporting what they ‘saw’. In hindsight (and 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. Post surgery, 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 – classic risk management dilemma.
My disease was not confined to the small intestine and surrounding area, my liver also had a significant amount of disease. Once NET cancer was confirmed that led to specialist scans which can pick up tumours not easily found on conventional scanning techniques. In my case, in addition to confirming areas seen on the CT scan, it also identified distant nodal disease in the left axillary nodes (armpit area) and left SCF nodes (collar-bone area). A recent specialist scan has identified a new ‘lesion’ in my thyroid (blog post to follow soon).
They key point I’m making here is that 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 (who is 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, i.e. 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!
For a primer on NET Cancer, there’s a rather nice set of booklets here: http://www.netpatientfoundation.org/support-information/general-informati on-on-net/ The 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 will go into more detail. For medical staff and patient advocates, a very good ‘technical’ publication is available free here: download
10th November is annual NET Cancer Day, please show your support by adding your name to here: https://t.co/PG0DZViln6
I’m a ‘tweeter’ which is such a fantastic tool for spreading awareness if used properly. If you’re also a tweeter, please follow me here to help spread awareness and news about NET Cancer. Follow me by clicking here:
https://twitter.com/RonnyAllan1
Please also follow my blog and share across your own social media systems. If you want to receive an email when a new post is published, click on the follow button. In addition to WordPress (the blog tool), I also post on Facebook, Twitter, Google+ and StumbleUpon.
