Neuroendocrine Tumours (NETs) are a complex group of tumours that develop predominantly in the digestive or respiratory tracts, but can occur in other areas of the body. Often, the disease grows slowly and quietly and by the time it is diagnosed, the patient is already at an advanced stage of the cancer.
However, many patients do show one or more vague symptoms which can be mistaken for common conditions such as Irritable Bowel Syndrome (IBS), Crohn’s disease, peptic ulcer disease, gastritis, asthma, menopause, blood glucose and blood pressure problems. The most common symptoms are diarrhoea, flushing, cramps, wheezing, low blood sugar (hypoglycaemia), changes in blood pressure and heart problems. These symptoms can be collectively known as Syndromes and there are a few associated with NETs. The syndromes are mainly caused by the excess secretion of a number of hormones which will vary by location and type of NET involved.
Some NETs are non-functional (asymptomatic) which can often lead to discovery at an even more advanced stage. It’s an uncommon and complex disease and can be a challenge to diagnose even for an experienced physician. This is one reason why awareness is really important – not just within the general population but perhaps even more importantly within the medical community. After diagnosis, many patients will end up with significant quality of life issues even after initial treatment due to the effects of the various syndromes and the side effects or consequences of treatments.
Like many other cancers, NETs has a day in the year where the community comes together and spreads as much publicity and awareness as possible – that day is November 10th or NET CANCER DAY. However, to me, it’s not only special in the sense of spreading awareness but it also has very personal memories of the major surgery I had in 2010 shortly after my diagnosis.
As a NET Patient and a campaigner, clearly NET Cancer Day is special to me. Awareness of NETs is an extremely important issue to me given the diagnostic challenges outlined above. It’s actually one of the main reasons I set up my own campaigns using my blog and then later with my Twitter accounts and Facebook page. However, I extend my awareness campaigns beyond diagnosis as living with the disease also has significant and perhaps greater challenges. Not a day goes by when I will not have blogged, posted or tweeted something about NETs and it’s no surprise that November tends to be my busiest month.
November 10th also has a very personal significance for me. It was on that day in 2010 that I gradually woke up after a marathon 9 hour surgery, the first of what was to be several visits to an operating theatre. The last thing I remember before the anaesthetic took hold were the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained by the dozen or so support systems which were connected to my body. I tried to lift my arms but it seemed impossible. I then realised my wife Chris was holding my hand and that gave me a great deal of much-needed comfort and security. At the time, I had no idea this day was the annual day for my cancer but I certainly knew it was the beginning of a new chapter of my life. In those days, I was focussed on two things: to get my treatment done, dusted and out of the way; and trying to maintain some normality in my family and work life.
Some 6 years on, my major treatment is hopefully complete, although I still have monthly injections of somatostatin analogues. I guess I’m watching and waiting via regular surveillance for any recurrences or growth in my remnant tumours. Considering my cancer is incurable, I still have a relatively normal family life. That said, I eventually took early retirement from work to find the correct balance. However, that has given me the opportunity to start new projects. I now have time to blog, campaign and help others. Although November is a special period for awareness, I’m doing this throughout the year on an international basis using my blog, my Facebook page and my ‘Every day is NET Cancer Day’ campaign. I just go up a gear in November adding to the significant campaigns of other organisations with the culmination being November 10th – NET Cancer Day.
For me, November 10th is an extra special day for more than one reason. On this day in 2010, I realised I might just actually survive this cancer. You could say I woke up on NET Cancer Day.
Ronny Allan is a six year survivor of metastatic Neuroendocrine Cancer. He resides in Hampshire UK with his wife. He has a son and daughter and four grandsons. He enjoys family life and travel. Ronny blogs about cancer and his survivorship experience at his website https://ronnyallan.com/ He is also a strong advocate for Neuroendocrine Cancer awareness and his associated Facebook site has attracted 3500 followers. His blog has been featured by several organizations and he has recently been selected as a finalist in the WEGO 2016 Health Activist Awards in 2 categories of ‘Blog’ and ‘Community’.