Neuroendocrine Cancer - shhh! Can you hear it?

3 minute read time.

10 Dec 2015

The sooner any cancer can be correctly diagnosed, the better chances of a complete cure for the person concerned. However, some cancers are not as easy to diagnose as others. Neuroendocrine (NET) Cancer is one of the difficult to diagnose cancers due to the vague symptoms which may be mistaken for other diseases and routine illnesses. With some patients, this may go on for many years. I don't normally pay too much attention to patient surveys (ask me why....) but I did note the most recent one suggested an average of 4.3 years to diagnose, which is less than others I've seen. The most common misdiagnosis appears to be irritable bowel syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing, shortness of breath, diarrhoea, flushing, palpitations and a whole host of other minor issues. There are even extreme cases where patients have been told they may have a mental illness following constant visits to their local doctors. These cases can lead to years of delay from the onset of symptoms, with around half of patients diagnosed at an advanced stage of disease and metastases at initial presentation. I have heard of extreme cases where people have waited 15 years (plus) for the correct diagnosis.

I'm not totally up to speed on what happens overseas, but in the UK, you normally only have 10 minutes (5 in some scenarios) to see a doctor. This isn't sufficient to diagnose NET cancer which is more likely to be as a result of a number of visits where a picture can emerge and even then, a referral to a specialist may not necessary lead to an immediate discovery of a NET cancer - this is pretty normal as anyone who is diagnosed with NET Cancer on the first visit to any medical professional is extremely lucky! As part of an increase in awareness at primary care level (PCP/GP) in the UK, the NET Patient Foundation has sent an electronic copy of an interactive symptom awareness booklet to every GP in the country, encouraging referrals to the relevant NET clinic. 5000 paper copies have also been distributed by NET patients and their supporters.

In my own case, I appear to have had an above average diagnostic experience but with some luck on my side. I nonchalantly said to an Asthma nurse that I thought I'd lost a "wee bit of weight" and that led to a set of routine blood tests where my haemoglobin was found to be low enough to be declared by a doctor as iron deficiency anaemia. My GP then referred me to a specialist who was immediately suspicious that a (then) 55-year-old and healthy looking chap had been initially diagnosed with iron deficiency anaemia. That said, I had seen the same specialist some 21 months previously for a colonoscopy after noticing a darkening of my stool over a period of 3 or 4 days. That turned out to be negative and I have no idea whether he ventured into the end section of the small intestine where my primary NET was lurking and possibly at that point starting to eat away through my intestinal mucosa. There was no further clinical evidence to push for a scan which might possibly have picked up cancerous activity. In my second visit to see him in July 2010, even after several imaging tests which clearly showed signs of cancer, he still couldn't pin my type of cancer down. It wasn't until I mentioned flushing that his eyes lit up. I was fortunate - he had heard about this symptom in relation to the most common sub-type of NET Cancer - Carcinoid. Despite a subsequent diagnosis of metastatic and incurable disease, I consider myself luckier than some. The best I could have hoped for was a diagnosis 21-24 months prior to 'D Day' on 26 July 2010. I went onto to have a number of debulking surgeries and other procedures and am now 'stabilised' on monthly Lanreotide. 5 years later I'm still here.

The longer it takes to diagnose NET Cancer, the more dangerous it can become and the chance of a curative scenario is vastly decreased. There are reports confirming the incidence of NET Cancer is on the increase and I'm certain this is partly due to increased awareness. However, it's probably true to say the term 'silent cancer' or 'quiet cancer' is apt even in those who are fortunate to be diagnosed at an early stage. Check out this rather excellent video from NET Centre of Excellence at the Royal Free Hospital entitled "Neuroendocrine Tumours - The Quiet Cancer".