One of the most discussed and debated Neuroendocrine Cancer issues is late diagnosis. Cyberspace is full of disturbing stories on various web sites, Facebook chat sites and charity/support group forum sites.
Neuroendocrine Cancer is also known as Neuroendocrine Tumours, or NET for short. It’s also frequently referred to as ‘Carcinoid’ but technically this is just a type of Neuroendocrine Tumour (the most common variant though). Statistics indicate that 90% of patients are incorrectly diagnosed for something else and it takes on average 5 years for this cancer to eventually be diagnosed. These are staggering statistics and are difficult to comprehend.
So why is it so difficult? Neuroendocrine Cancer is rare with incidence rates of around 3 per 100,000 people diagnosed each year. The tumours are normally (emphasise not always) slow growing and therefore can be hidden for some time before they start to cause vague symptoms. In many cases these symptoms are similar to routine illnesses which Doctors see on a daily basis. Unfortunately, some of these symptoms could mean that the cancer has metastasised (spread) and has become incurable or at best can be very difficult and expensive to treat – thus the name ‘silent cancer’. Given the statistics above, it’s vital that more Doctors and General Practitioners are made aware of NET Cancer and it’s symptoms however generic they may seem. If your Doctors don’t suspect it, they won’t detect it.
There is an increasing awareness of Cancer today much more than there was 50 years ago – this is a good thing. However, the well known and more prevalent cancers which hit the headlines almost daily, in most cases have had significant awareness campaigns, funding and research. This is why in the UK for example, these cancers (e.g. breast, bowel, lung and prostate) have improved detection rates, falling mortality rates and people are living longer with the disease. This is excellent news.
However, there are certain cancers which do not have improved statistics and clearly need more attention (e.g. Pancreatic). Some charities and patient support groups have become so impatient and frustrated over the failure to improve matters that they have launched hard hitting campaigns such as the controversial “I wish I had ‘x’ Cancer”. Check this link here as a refresher: http://www.dailymail.co.uk/health/article-2568262/Tragedy-woman-face-controversial-pancreatic-cancer-campaign-dies-aged-just-24.html
Some of the less known and rarer cancers also need some attention – clearly I’m inferring NET Cancer! So putting aside more funding and research – what can be done now? Greater awareness and education can lead to earlier diagnosis but currently the bulk of awareness campaigning for NET Cancer in the UK is left to the charities and support organisations who specialise in these diseases. In my opinion, this is starting to take effect with more organisations such as PLANETS (working in conjunction with NET Patient Foundation) helping (for example) to coordinate the delivery of NET Cancer Awareness Toolkits to their supporters, local surgeries and GPs. See more about this on the NET Patient Foundation websiste here: http://www.netpatientfoundation.org/2013/01/help-wanted-with-our-gp-awareness-campaign/ Additionally the NET Patient Foundation will be holding an event on Tuesday 4th November in the House of Commons, which aims to increase awareness amongst parliamentarians about NET cancers and the challenges to timely diagnoses. They also hope to communicate the importance of NET centres of excellence, and to bring NETs to the forefront of the cancer agenda. Check out their link: http://www.netpatientfoundation.org/2014/07/net-cancer-day-house-of-commons-event-on-4th-november-come-and-support-us/ But so much more can and needs to be done!
Social media is also playing a big part in spreading the word. If you are reading this and you are not currently very knowledgeable about NET Cancer, then it works! If you now feel you need a short ‘primer’ then look here: http://www.planetscharity.org/about-planets-cancers/net-cancer/
Recently, I met one of the 6 doctors at my local surgery for the first time on a non NET cancer matter. He took the opportunity to chat about my diagnosis and he seemed to be quite knowledgeable about NET Cancer. I was both surprised and delighted. It was very refreshing and gave me hope that the message is getting through.
So how did I fare with my own diagnosis? I blogged a few times about this: http://wp.me/p4AplF-1W. I have always thought myself luckier than most. I suspect the best I could have hoped for was diagnosis about 20 months prior to ‘D Day in July 2010. However, my problem at the time was so vague that there wasn’t much justification for expensive tests (i.e. scans) plus by the time I got to see the specialist, the problem had settled. My referral to specialists in May 2010 was fairly random as I hadn’t initially intended to say I thought I’d lost a few pounds in weight – so I had some luck on my side. I also had a pretty thorough and professional nurse who made me have a blood test ‘just to be sure’. As it turned out to a trigger for further checks and referral, she gets a christmas card and ‘wee pressie’ each year :-) My specialist was pretty much on the ball. A 55 year old fit and healthy looking male presenting with low hemoglobin (pointing to anemia) – boom! CT scans, ultrasounds, blood tests, the works – except he could not pin down the exact cancer type until I mentioned facial flushing. Eureka, he knew and correctly predicted the results of the forthcoming liver biopsy.
Ronny
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