Neuroendocrine tumours (NETs – also known as carcinoid tumours) are rare, so treatment for them has not advanced as it has done for common cancers such as breast and bowel cancer. My consultant could only advocate surgery, and hope he’d caught it early enough.
What I didn’t know then was that there is a potential treatment for this type of cancer, languishing in a deep freeze in Sweden: a so-called “cancer-eating virus”. Yet it seems the treatment may never see the light of day. Alexander Masters reported in the Telegraph magazine two weeks ago, in an article that has received international attention, that researchers have been unable to raise the paltry £2 million needed to take the treatment to clinical trial.
The thought that out there is something that could be investigated for a couple of million is difficult to come to terms with. I emailed Masters, to thank him for uncovering this story and – who knows – perhaps inspiring someone to come forward and fund the research. But I want to do more.
In my day-to-day job as a communications specialist, I tell other people’s stories, not my own. So it feels uncomfortable to write about myself and my family on such a personal and emotional level. But so little is known about NETs, so little invested in research, that I’ve decided to go public about my experience, in the hope of raising awareness, and maybe continuing what Alexander Masters started.
Before that New Year encounter at St George’s in south-west London, I was a relatively fit 44-year-old, whose Type 1 diabetes (which I developed as a teenager), had never held back my career flying in and out of war zones for international aid agencies.
Then, the week before Christmas, I developed a sharp pain in my lower stomach. My wife, Glenda, (who, armed with Google and a fertile imagination, is always diagnosing rare ailments) nagged me to see our GP. I went, just to keep the peace – and was rushed into hospital to have my appendix out.
The next day my surgeon told me that, surprisingly, there seemed to be nothing wrong with the excised appendix and I was discharged, still drunk from the anaesthetic and in pain, but armed with a sick note that would get me off washing-up duty over Christmas. There was nothing to suggest that my follow-up appointment in January was anything other than routine and so I went along to the hospital on my own. But I was harbouring a nagging doubt. And I wasn’t wrong. My consultant, Robert Hagger, told me they had found a 12mm tumour on my appendix.
“So, I have to tell my wife I have cancer?” I asked.
He said that technically it wasn’t called a cancer, but a neuroendocrine tumour. I can see his face now. Professional, calm, caring and concerned. Even then, drowning in fear and confusion, I liked and trusted Mr Hagger.
“But it is a tumour?” I asked. “And it spreads? And it might kill me? Forgive me, but I’m going to call it cancer. So what’s the treatment?”
That was when Mr Hagger had to explain there was very little that could be done.
NET is the umbrella term for a group of unusual tumours that develop from the neuroendocrine cells that are responsible for the production of various hormones such as adrenalin, insulin and serotonin. NETs can be benign or malignant. They may also release hormones but in an uncontrolled way.
Mr Hagger explained that once a NET has spread, it is called cancer. (It continues to be a technical nicety that passes me by. The subtleties of the terminology won’t save my life.) NETs are so rare that even a big teaching hospital such as St George’s only see a few cases annually. According to Macmillan Cancer Support just 1,200 people are diagnosed with NETs each year in the UK, although the incidence is increasing.
NETs can develop all around the body – in the lungs, the pancreas, and the bowel, for example, and this causes confusion. An NET in the bowel isn’t bowel cancer. In the case of Steve Jobs, it was widely reported he had a form of pancreatic cancer, for which the prognosis is often poor. But he actually had a NET in his pancreas. The prognosis for this is much better – if you have surgery early. However, it has been reported Jobs’s surgery was delayed and, if true, this may have contributed to his death at 56. This remains a matter of conjecture because he never spoke about his illness in detail.
My surgeon recommended a right-hemicolectomy, an operation to remove a section of my colon where the nearest set of lymph nodes to the original tumour was situated. Lymph nodes, located all over the body, are an important part of our immune system. They also act as jumping-off points for cancer cells to spread from a primary site.
Mr Hagger explained it like this: “I look at lymph nodes as being ‘filters of disease’. If you have a sore throat, the lymph nodes in your neck swell in response to the infection as the microbes are filtered through them.Lymph nodes “straining” disease and infections out from a particular part of a body may be a site where cancer cells can lodge.” So, lymph nodes ”catch’’ the cancers – and harbour them while they grow and spread.
He said he hoped that he’d find no disease in my lymph nodes; there were rarely any side effects from the operation, that I wouldn’t need a colostomy and I’d be out of hospital in six days. In the meantime, I’d have regular CAT scans, urine and blood tests. Because NETs can produce hormones in the blood, a rise in the levels of certain hormonal by-products, as they break down, can also be an indication of spread.
It was then Mr Hagger spelt out the statistics. If there was no spread to the lymph nodes I had a 90 per cent chance of surviving five years. If it has spread to the lymph nodes then that falls to 80 per cent. And if it has spread further, I had a 30 per cent chance.
Somehow I found myself outside the Macmillan Cancer counselling office in St George’s. I remember thinking: I feel sorry for the people who have to go in there – they have cancer. Then I remembered: so did I.
A kindly woman with a gentle voice asked me if I was OK. I wanted to fall at her feet and howl in pain. But I didn’t want to make a scene. “Yes, thanks, I’m just looking for the loo,” I muttered.
I’ve worked in refugee camps across the world. My job is to convey to others what is happening to people in the extremes of despair. At the time I was working for the charity World Vision, where I dealt with stories about starving and abused children. Yet during that five-minute walk from St George’s to my home in Tooting I had no idea what I was going to say to my wife.
I was angry. My father, an alcoholic, had never been around much when I was a child. I vowed that if I had children, I would never leave them. Having a family was a very considered decision. I wanted to be a good father, a strong presence who was always there for them. And now, I was faced with the real possibility that I could be torn away from them – with no control, no choice. This was not how I’d planned it.
Faith, three, and Alethea, who had just turned one, were belting around the kitchen, immersed in one of their interminable play races as I stood by the fridge and tried to put into words what had just happened. I couldn’t.
Glenda had to ask me several times before it became clear what I was trying to say. “So is it cancer?” she asked repeatedly. Then we put the girls to bed, cried, drank wine and ate all the chocolate and Haribos we could find. Life-changing moments can be mundane like that.
In those first days I couldn’t look my at daughters as they laughed and played, oblivious. I was consumed with the fear that I might soon desert them. I felt I was about to betray them.
Since then, my world has been turned upside-down: it is a world of blood tests, urine tests, CAT scans and a painful operation in February, in which 17 lymph nodes were removed. Further tests showed that the cancer had spread to one of them. Bad news. But I had done my own research and discovered, thanks to Lisa, a friend who works, coincidentally, as an oncology nurse specialising in NETs at another London hospital, that there is a specific and highly sensitive test for NETs. It is called an octreotide scan, a three-day extravaganza in which they inject you with a radioactive chemical that is absorbed by the NET. It complements the standard CAT scan because it can highlight some – not all – NETs when they’re still too small to be picked up by other tests, so – crucially – they can be removed before they take hold.
The team at St George’s considered I’d had sufficient radiological scanning but, to their credit, they immediately agreed to let me have this second scan when I asked for it. It came up clear.
I had another scan this week. This will be my life for the next five years: every time a scan is clear my chances look a little better, but until the five years pass, I can’t be sure. There is no good news in this business. I have a scan and the best I can expect is a “no cancer yet” result. The sword of Damocles still hangs over me. Cancer patients are never clear – they just aren’t dead yet.
Seeing Mr Hagger is always a bittersweet experience. He’s a great guy and I feel privileged to be treated by him. Each time he tells me I’m clear, I feel happy. Yet, each time I walk in, I know I may hear I’m about to die.
When I read about the Swedish virus I tried to keep calm. It’s hope that can be hardest to bear. And yet, maybe, just maybe, there is a treatment, even a cure, waiting for me – for all of us. Maybe the Swedish magicians will make this all go away for me, for Glenda and my girls.
Despite it all, here’s the thing: I feel lucky. Lucky to have met Mr Hagger. Lucky to be married to Glenda, for the love with which she surrounds me. But I also feel lucky because of the sheer randomness of events. I randomly had a stomach ache – Mr Hagger told me that the tumour would not have caused my stomach pain – and my wife persuaded me to see the doctor. I randomly had my appendix out and they found a tumour. I randomly have a friend who specialises in NETs and who told me about this specialist scan – and I managed to get that scan.
At the moment I feel bullet-proof. You may say I’m in denial, and I guess I am. One day, though, my luck may run out. If you asked me then whether at the moment I was told my tumour had spread, would I opt to take the untested virus myself? Would I risk all for the chance to see my daughters go to school, and to hold my wife’s hand as we celebrate our 10th wedding anniversary – instead of forcing them to watch me die, tubed up and in pain? Hell, yes!
• To support Professor Essand’s research, send contributions to Uppsala University, The Oncolytic Virus Fund, Box 256, SE-751 05 Uppsala , Sweden , or go to uu.se/en/support/oncolytic
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