The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they were experiencing were unusual for them. Great advice and a reminder that the patient has a duty to help in their own diagnosis. Ali also said to insist on seeing a doctor again if you felt something was still not right after the first visit. Again, excellent advice on the basis it appears to have saved her life. Click here for Ali’s interview
One other major story which caught my attention was the statement from NICE (National Institute for Health and Care Excellence) that they intend to update their guideline document “Suspected cancer: recognition and management of suspected cancer in children, young people and adults”. The statement followed news of research which indicated up to 10,000 people in England could be dying each year due to late diagnoses. This research cited the reasons why cancer diagnoses may be missed and these included the fact that over 200 different types of cancer exist, each with different symptoms, and that patients present at their GP with symptoms which are non-specific. Does that sound familiar to NET Cancer patients?
I found the NICE statement very interesting because in the 4 years I’ve been studying NET Cancer, I’ve never heard of these guidelines so thought I’d take a look. No surprises that NET Cancer (or more specifically, Neuroendocrine Tumours or Carcinoid) was not mentioned as a condition. I searched the entire 405-page document using the search terms ‘Neuroendocrine’, ‘Carcinoid’ and ‘flushing’ and only turned up a single reference to ‘Neuroendocrine’ within the children’s cancer section under Neuroblastoma.
The guidelines are constructed to look at cancer in terms of anatomy so I, therefore, looked at the most common place for a NET cancer – the small intestine. Good time to refresh my view on this by reading blog post The Anatomy of NET Cancer. I was happy to find a section on cancers of the small intestine which it defines as “a rare cancer of the duodenum, jejunum or ileum, with different histological subtypes. Most GPs will not diagnose a case during their career. The rarity of this cancer means there are no relevant studies of its clinical features. It may have symptoms similar to those of stomach or colorectal cancers. The main method of diagnosis is by biopsy, which is performed in secondary care.” That got me thinking that the target area for NET Cancer awareness campaigns in the UK might need to be focussed more on secondary rather than primary care? Food for thought?
I then found a non-anatomy based section further on entitled “Recommendations for specific symptoms and signs” which then cross references to the potential cancers involved. I was hoping to find something in there so I searched on the most common symptom of Carcinoid Syndrome (in most cases indicating an advanced carcinoid tumour) but there was no sign of the most common symptom of the most common type of NET Cancer.
It’s fantastic that NICE is updating its guidelines to provide the latest clinical and best practice advice to GPs. I also read that they are encouraging GPs to refer more people to secondary care as another way of tackling the late diagnosis issue (particularly important for NET Cancer patients when you consider the NICE guidelines above) – see BBC News article
It’s right that the more prevalent and more aggressive cancers be included as a priority in the NICE guidelines but NET Cancer is a notoriously misdiagnosed condition and people do die of this disease. Additionally, many people have to live with a reduced quality of life due to the symptoms and side effects and this comes at great cost to health providers. Perhaps the incidence rate of NET Cancer is still not high enough to merit mention in the NICE guidelines. Or perhaps there is still a general ignorance of these types of cancers in the ‘medical establishment’?
You can see a copy of these guidelines here although I suspect only UK-based patients will be really interested. Personally, I feel there could be a section specifically on Neuroendocrine Tumours as there are for other ‘systemic’ cancer types, perhaps with cross references to the various anatomy based sections in the document. Consequently, I’ve emailed NICE asking if there is anything in the pipeline to include guidance on NET Cancers and I urge UK-based patients to do similar – their email is: email@example.com
NET Cancer patients and their advocates have been pushing and pushing for more recognition and it appears in the UK, this will go on for some time. Whilst I recognise the positive moves above, it’s important that both primary and secondary care medical staff are alerted to the symptoms of NET Cancer and are able to spot these at an earlier stage.
NET Cancer patients need an early diagnosis, not early misdiagnosis!
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It was 10th November 2010 just after midnight. 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 remembered before going ‘under’ was 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 ‘connections’ to my body. However, what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.
The build up to this day began on 26 July 2010 when I was given the news that I had metastatic Neuroendocrine Tumours and that the prognosis without any treatment wasn’t good. A liver biopsy graded one liver tumour sample at Ki-67 5+. I told my Oncologist to ‘crack on’ with whatever treatment would be required.
However, it wasn’t that easy and as I was yet to find out, Neuroendocrine Cancer isn’t a simple disease. I first had to undergo a plethora of other tests including specialist scans, blood and urine. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a substance known as Octreotide which is a type of drug called a ‘somatostatin analogue‘. The scan also confirmed I had more tumours than initially thought. This was key to working out my treatment plan.
When I presented in July 2010, Although I hadn’t realised, I was showing symptoms of ‘carcinoid syndrome‘ although mainly flushing but thinking back, there was some diarrhea albiet infrequent. The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming the diagnosis. The elevated readings were due to the tumour bulk and excessive secretion of specific hormones which is one of the facets of metastatic carcinoid. Thus why I had to be established on a ‘somatostatin analogue’ which is designed to inhibit the excessive secretion. I self-injected Octreotide daily for 2 months until the flushing was under control. When Carcinoid tumours cause carcinoid syndrome, there is a risk of a phenomenon known as ‘Carcinoid Crisis’. This is the immediate onset of debilitating and life-threatening symptoms that can be triggered by a number of events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 in order to have an ‘Octreotide soak’ (Octreotide on a drip) prior to the surgery on 9th November 2010.
As is normal for such procedures, I had the risks explained to me. There seemed to be a lot of risks on the list and my surgeon, Mr Neil Pearce, carefully explained each one. Death was on the list but I was happy to hear he had a 100% record on his ‘table’. Trust is an extremely important word when you’re in this situation.
As a snub to cancer, I refused the offer of a wheelchair and chose to walk to the operating theatre at 2.00-2.30pm – about 3 hours later than planned (it was worth the wait because I’m still here!). So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown (carefully fastened at the rear!), I wandered down to the operating theatre with my nurse.
The 9-hour operation was designed to debulk what was described as “extensive intra-abdominal neuroendocrine disease”. The operation comprised the removal of 3 feet of small intestine at the terminal ileum plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction. With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava below the level of the superior mesenteric artery. Thank goodness I was asleep 🙂
In those days, I had no idea that 10th November was NET Cancer Day. Some 6 years later I not only celebrate the fact that I woke up on this date after my first major surgery but that I have also woken up to the idea and inspiration behind NET Cancer Day!
However, for me now, EVERY DAY IS NET CANCER DAY