It goes without saying that the sooner any cancer can be correctly diagnosed, the better chances of a complete cure for the person concerned. However, some cancers are easier to diagnose than others. One of the key issues associated with the correct diagnosis of Neuroendocrine (NET) Cancer is the vague symptoms which may be mistaken for other diseases and routine illnesses. Moreover, this may go on for many years. 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.
Some respected medical sites quote an average 5 to 7 years of delays from initial onset of symptoms, with around half of patients diagnosed at an advanced stage of disease and metastases at initial presentation. I have even heard of extreme cases where people have waited 15 years (plus) for the correct diagnosis. The term ‘silent cancer’ is apt.
In the last few years, fantastic progress has been made by NET Cancer specific organisations across the world who have been campaigning for a number of things including greater awareness of their advocated diseases. At the top level is NET Cancer Day – an annual awareness event on 10 Nov. The international sponsored effort has led to a growth of national NET related organisations in many countries which is growing each year. Social media has helped enormously as it has done with many other causes. There are some reports to suggest the incidence of NET tumours is on the increase and this could be related to better awareness campaigns.
However…….. we need so many more awareness messages and information – not just aimed at candidate patients but medical staff too. I’m not 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. However, the patient also needs to help by keeping a detailed diary of all symptoms and be able to articulately explain their issue to their doctor in the 5-10 minutes. As I stated above, it may not necessary point directly to a NET Cancer on the first visit but it adds to the jigsaw. In the UK, the NET Patient Foundation have 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 actual 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. I suspect not or it was at that point too small to see. 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 image 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 the most common type of NET Cancer – Carcinoid. Despite a subsequent diagnosis of metastatic and incurable NETs, 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 have a number of debulking surgeries and other procedures and am now ‘stabilised’ on monthly Lanreotide. I was lucky on three counts:
a ‘Zorse’, half zebra, half horse.
Another obstacle to early diagnosis of NET Cancer is that the medical community use the term “zebra” which is universally understood as a reference to a rare disease. Physicians are taught that the core tenet of medical diagnosis is that the simplest explanation is usually the best, that is, it is generally more productive to look for common, rather than exotic causes for medical problems. Hence the phrase, “If you hear hoofbeats, think horses, not zebras.” Maybe they should sometimes think ‘Zorse’ (at least….)
A useful primer on NET Cancer can be found here: http://netcancerday.org/learn-more/what-is-net-cancer …. there are actually many excellent primer publications but thought I’d remain ‘agnostic’ and recommend NET Cancer Day :-)
For medical staff and for patient advocates, a very good publication is available free here: download
So how early is early? If you take my lucky case, 2 years is much earlier than the average wait for NET Cancer diagnosis but still too late on the basis that my disease had metastasised and is now incurable, i.e. still not early enough! Perhaps we also need better and more available tools and techniques for testing and we definitely need more research to provide a cure and better treatments. That’s a story for another day!
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