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Discovery and Diagnosis
“Did you mean to lose weight?” Inquisitive words from my asthma nurse Liz who was carrying out my routine
annual assessment. Liz always asked about my general health and I just happened to mention I’d lost half a stone in weight but wasn’t really sure about the length of time it took to lose it. Liz sent me for a routine blood test as a precaution. I had to retake the test because of a very low haemoglobin result. It wasn’t until I was asked to come to the GP surgery to discuss the retest, I realised something was clearly wrong. My GP diagnosed iron deficiency anaemia asking if I had been feeling fatigued. I had but put it down to working too hard! He referred me to a specialist clinic in Bournemouth where I was given an appointment 6 weeks ahead. Sufficiently concerned by this stage, I chose to invoke my employer’s health insurance cover and had an appointment with a consultant within 48 hours. This appointment started a chain of events which will be familiar to many readers. I had a CT scan later that day and was asked to return the following day for more tests. The consultant indicated the scans and tests had found something unusual and proceeded to ask me a series of questions about my health looking for clues. It wasn’t until I mentioned I’d been experiencing mild and infrequent flushing sensations (which I had been associating with my age!) that he suspected I had something known as Carcinoid which was very rare but I would need to undergo a liver biopsy to confirm. I have no recollection of the word ‘Cancer’ being used but as I was being referred to an Oncologist that should have been sufficient.
I had read that many newly diagnosed Cancer patients go through stages of shock, disbelief, anger and acceptance. For me this was true; at first I just didn’t believe I had cancer – after all, I didn’t feel ill! I met with the Oncologist – Dr Tamas Hickish at the end of July 2010. He confirmed the news that I had a Neuroendocrine based and rare cancer type known as Carcinoid. I had already moved into the anger phase (more a ‘why me’ type of anger) but I then very quickly moved into the acceptance stage after Dr Hickish had explained both the diagnosis and prognosis. In fact when Dr Hickish told me the prognosis without any treatment could be months rather than years, I knew I had no option but to fight it and get on with whatever was required.
Carcinoid Specific Testing
Shortly after seeing Dr Hickish, my flushing worsened and was now several times daily, more intense, longer lasting and visible. Although I was keeping my condition private in the workplace, the flushing was beginning to attract attention. I was experiencing a degradation of my Carcinoid Syndrome – confirmation that my tumours had metastasised (spread) but this was already clear from the radiography. I then discovered from the results of an Octreotide scan that the spread of the disease was even potentially greater than previously reported on as CT scan. The primary was confirmed in the ileum with abnormalities in the mesenteric tissue and the para-aortic and para-cava tissue together with several areas of quite ‘isotope avid’ activity in the liver. Additionally two areas of activity were also demonstrated in the left axilla (armpit) and the left supraclavicular fossa (near the collar bone). So not only had the tumours spread but this very specialist scan indicated many of them were potentially active and contributing to the effects of the syndrome.
The Treatment So Far
Although I was keen to get on with the surgical aspect of my treatment, it was explained that my Carcinoid Syndrome needed to be brought under control mainly due a phenomenon known as ‘Carcinoid Crisis’. This is a debilitating and life-threatening condition associated with Carcinoid syndrome and may occur spontaneously or may be precipitated by (amongst others) anaesthesia, infection, stress, tumour manipulation or embolisation procedures. I had already connected my flushing episodes to periods of stress which didn’t normally affect me in any physical way – so I sensed the danger. In fact, a precursor to the treatment I was to receive in Spire Hospital Southampton was to include a ‘soak’ in Octreotide before each procedure as a de-risking measure. I was therefore started on daily self-injecting Octreotide. Within a week, this treatment reduced both the frequency and intensity of the flushing i.e. it was controlling the release of excess hormones associated with Carcinoid Syndrome – mainly Serotonin.
For surgery, I was referred to Mr Neil Pearce who along with Dr Tamas Hickish was to become an important figure in my subsequent treatment. Mr Pearce also introduced me to Dr Brian Stedman who was to carry out various radiological interventional treatments over the following few months, commencing with a liver embolisation prior to my first major surgical operation. I was very fortunate to be referred to both of these Consultants as they are recognised nationally as experts in the treatment of Neuroendocrine Tumours using minimally invasive techniques.
On 9th Nov 2010 Mr Pearce spent 9 hours treating what he described as “extensive intra abdominal neuroendocrine disease” carrying out a right hemicolectomy, a mesenteric root dissection and a superior mesenteric vein reconstruction. Additionally with the assistance of another surgeon (Mr Mike Phillips), carried out a tricky and high risk procedure involving the dissection of the large block of para-aortic and para-caval tissue which had encircled my aorta and cava almost occluding the latter. This fibrosis was almost certainly caused by a reaction to the release of excess serotonin from tumour areas within the gut. Although samples from this area were later found to be benign, this was seen as a serious complication which could have presented future problems. Following nineteen long days in Spire Hospital Southampton with a few ‘hairy moments’ along the way, I was glad to get home. Almost immediately after the surgery, I started a monthly course of Lanreotide which has to be administered by a trained nurse. Like Octreotide, Lanreotide reduces the production of certain hormones in the body and is therefore designed to control Carcinoid Syndrome. With the combination of the surgery and the Lanreotide, the flushing was totally eliminated.
At the beginning of 2011, one of my routine follow up CT scans highlighted some small Pulmonary Embolisms (PEs) (blood clots) and I was immediately put on daily injections of Clexane to thin my blood. I remain on these injections today and although I don’t know when I’ll be able to stop, I do know they are reducing the risk of further PEs developing – lesser of two evils I suppose.
Mr Pearce did say he would give me a ‘hard first year’ and arranged for me to go back into Spire in Apr 2011 for a Liver resection. Prior to that Dr Stedman fitted an IVC filter to de-risk further PEs developing. Using ‘keyhole’ techniques, Mr Pearce carried out another successful operation with 90% of hepatic tumour burden removed. I was in hospital for 5 days and back to work after 3 weeks (although in hindsight I should have waited another week or two).
The remainder of 2011 was uneventful comprising routine radiography and biochemistry testing and a further Octreotide scan. My Lanreotide treatment continued. Everything was reported as stable and my biochemistry results were mostly unremarkable having fallen dramatically after surgery and Octreotide/Lanreotide treatments. During this period, I adjusted to my ‘new plumbing’, learning what not to eat etc. I found this a very challenging aspect of my post operative experience and one that shouldn’t be underestimated! The beginning of 2012 brought new personal challenges including a new job and a new house; I seemed to cope OK despite the additional stress.
As I write this ‘patient story’, I’m recovering from surgery undertaken by Mr Tony Skene of Bournemouth Nuffield on 27 Feb. Mr Skene removed several lymph nodes from the two ‘hotspot’ areas mentioned previously – my left armpit and left clavicle area. All 5 of the clavicle nodes removed tested negative but 5 of the 9 armpit nodes were found to be Carcinoid positive (not really a surprise given the results of Octreotide scans).
Future Treatment Options
Unfortunately the two bouts of abdominal surgery have reduced the possibility of further routine embolisation treatment for the residue liver tumour bulk but all remaining tumours are described as stable. Other than continuing with Lanreotide and Clexane, future treatment is still under review and I continue to have regular biochemistry and radiology tests.
Despite my situation, I consider myself luckier than some. Although my Carcinoid was diagnosed after I had become syndromic, I was fortunate to have had a curious and thorough Asthma nurse who sent me for that crucial and telling blood test. I often think what would have transpired had that not happened. I was also fortunate to have had speedy access to experienced and expert Oncologists, Surgeons and Radiologists. The support of my medical staff, employers, friends and family, in particular my wife Chris, is also helping me get through this difficult period. I hope others can relate to my story which I consider ‘work in progress’. Clearly I’d be very happy to expand on anything above which is of interest to either medical staff or patients who have had or are about to have any of the treatments above.
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