FUNDRAISING FOR A CURE
Donating is simple, fast and totally secure. Your details are safe with us and we will never sell them
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.
READ ABOUT HOW FUNDS ARE USED
PLANETS has thanked its supporters after completing a £1 million fundraising campaign and making the final payment for a pioneering radiotherapy machine. PLANETS Cancer Charity has been fundraising for the past six years to fully purchase Mobetron, a revolutionary mobile device which delivers radiotherapy during surgery – known as intraoperative radiotherapy (IORT). When the charity […]
Thank you to John Greenwood, Trustee of the The Hospital Saturday Fund, for visiting us on Monday and bringing this incredible grant of £10,000 to support our IORT (Intra Operative Radiotherapy) machine. This will enable us to continue delivering this lifesaving treatment at University Hospital Southampton – the only centre in the UK currently offering […]
PLANETS have funded a psychotherapy programme, after a successful pilot course, to help NET patients see their diagnosis in a ‘new view’. We all know that different people deal with their neuroendocrine cancer diagnosis very differently. Initially there are lots of scary tests and Doctor appointments. Then there are lots of talk about […]
A woman from Salisbury has become the first patient in the UK with head and neck cancer to receive radiotherapy in the operating theatre during surgery to remove a recurrent tumour. Jayne Garrett, 53, underwent major surgery at University Hospital Southampton on 25 April after suffering a recurrence of her cancer following conventional treatment […]
It was an honour to present the fantastic work and great initial results to medics from all over the country at our 1st National IORT (intra-operative radiotherapy) Symposium on Friday June 21st at University Hospital Southampton. After a lot of hard work and fundraising in order to bring IORT to the UK for the […]
A dietitian funded by PLANETS Cancer Charity and the Robert White Trust Fund is due to start work to develop and provide a comprehensive dietetic service to patients diagnosed with Neuroendocrine Cancer (NETs). Ruth Lee will be based at the Dorset NET service, which is part of the Wessex European Neuroendocrine tumour society centre […]
PLANETS are excited to share the news that University Hospital Southampton have secured £200,000 funding from the Robert White Trust for a research project that aims to gain a better understanding of NET biology which may lead to a greater range of treatment options for patients with this rare disease. Robert White was a former […]
We are thrilled and proud to update our supporters that a Southampton bowel cancer patient has become the first in the UK to receive radiotherapy during surgery using the IORT machine that PLANETS has funded. he 58-year-old male, who completed a combination of conventional chemotherapy and radiotherapy in August, underwent major surgery at Southampton […]
SOUTHAMPTON CLINICIANS PIONEER USE OF REVOLUTIONARY CANCER DEVICE PLANETS founders Neil Pearce and Brian Stedman, together with fund manager Layla Stephen successfully launched our long awaited IORT machine last night. The Mobetron is the first portable system able to administer the treatment in this way – known as intraoperative radiotherapy (IORT) – and will […]
PLANETS are thrilled to announce that the eagle (finally) has landed! 2 tons of intra-operative radio-therapy machine (IORT) arrived from the USA this week – currently undergoing acceptance testing. This is the UK’s first ever mobile electron beam radiotherapy machine for treating cancers during surgery. Thanks to everyone who has supported our fundraising which has […]
You may have notice that Southampton was mentioned in recent media stories regarding The National Tumour Bank that is carrying out important pancreatic cancer research? Colin Johnson, Professor of Surgical Sciences at University of Southampton, has this to say about the project: ‘The National Tissue Bank is a major development in pancreatic cancer research. Several […]
A big thank you to Sainsbury’s Hedge End for donating two digital radios to PLANETS to be used in the lead lined Gamma Scanner Rooms at Southampton General. Pictured presenting the radios to staff in the scanner rooms are PLANETS Fund Manager, Layla Stephen, and Dr Brian Stedman.
PLANETS Charitable Fund are excited to have committed to provide a grant over a two year period for a pancreatic research project: ́The role of Eps8 in αvβ6-dependent functions in pancreatic cancer invasion’ to be undertaken by Dr Jo Tod. Pancreatic adenocarcinoma (PC) has one of the worst outcomes of any cancer; only 3.7% of patients […]
[social_button button=”facebook” flayout=”standard ” fwidth=”450″ faction=”like” fcolorsheme=”light”] UHS magazine Connect featured a fantastic article about NET patient Maureen McKenzie who, in July 2013, became the first Southampton patient to receive PRRT (peptide receptor radionuclide therapy). The equipment for this treatment was jointly funded by UHS and PLANETS showing just how important and valuable the […]
[social_button button=”facebook” flayout=”standard ” fwidth=”450″ faction=”like” fcolorsheme=”light”] Pancreatic cancer affects over 8000 patients each year in the uk and remains the fifth biggest cancer killer in the UK, despite this its has been underfunded for many years and currently receives just 1% of total cancer research funding in the UK. NETs are a rare form […]
Subscribe to our Newsletter
Get informed about the latest news straight to your inbox