One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are much more difficult to diagnose than others and this increases the need for more awareness campaigns. Neuroendocrine Cancer - also known as Neuroendocrine Tumours, or NETs for short, is one such cancer. Statistics indicate that many patients are initially diagnosed with something else and it takes on average 4-5 years for this cancer to eventually be formally diagnosed. If accurate, these are staggering statistics and difficult to comprehend.
Why is it so difficult to diagnose? Neuroendocrine Cancer is less common but it does have a fast rising incidence rate (and it's not actually as rare as people think). The tumours are normally (emphasise not always) slow-growing and therefore can be hidden for some time before they start to cause vague symptoms. Sometimes it just stays silent. In many cases, these symptoms are similar to routine illnesses which Doctors see on a daily basis. Unfortunately, some of these symptoms could mean 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'.
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 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 quite brilliant and controversial Pancreatic Cancer "I wish I had 'x' Cancer".
HOWEVER ......... some of the less common cancers also need some attention - clearly I'm inferring NET Cancer! So putting aside more funding and research - what can be done now? 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! 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 have always thought myself luckier than most but I have read a lot of awful and heart-breaking stories. 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 I could see there wasn't much justification for expensive tests (i.e. scans). Moreover, by the time I got to see a specialist, the problem had settled. Even my referral to specialists in May 2010 was random as I hadn't initially intended to say I thought I'd lost a 'few pounds' in weight whilst at a routine clinic a month before referral. I had a pretty thorough and professional nurse who made me have a blood test 'just to be sure'. As this test turned out to be a trigger for my eventual diagnosis, she now gets a Christmas card and 'wee pressie' each year :-) My investigating specialist was pretty much on the ball. He was looking at a (then) 55-year-old fit and healthy looking male presenting with low hemoglobin - 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. However, the damage was done and I now live with incurable cancer. Despite this, I still feel lucky because I'm not dead - I often wonder what would have happened had I not had that blood test.
Sometimes with Cancer you need a bit of luck and I never think of my diagnosis as late. However, I was also helped by three other things. The nurse who sent me for a 'just to be sure' blood test was not a NET expert but she was doing her job in a thorough manner. The GP who analysed the blood results had used his instincts and his training to send me to a specialist. The investigating specialist was aware of NET Cancer but probably was not suspecting it until I said I was having occasional flushing (something I hadn't mentioned to the nurse or the GP). But he was suspecting something and in the end he did detect it.
NET CANCER - If your Doctors don't suspect it - they won't detect it. However, it helps when the patient lets them know all the facts. But ..... sometimes a referral for something else can be a stroke of luck.
Thanks for reading
Ronny Allan
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