Bowel cancer: 'At 55, I thought my time was up'

Nick Arbuthnott was too young to have screening for bowel cancer – so by the time doctors found a huge tumour, the disease had also spread to his liver. He tells Jeremy Laurance how he fought back

(John Lawrence)

One of the curious aspects of cancer is that while a tiny lesion can cause nasty symptoms in one person, a huge tumour may go unnoticed for years in another. Nick Arbuthnott was on a walking holiday with his wife, Vanessa, in the Pyrenees in 2007 when he first became aware that something was wrong. He didn't know then just how wrong.

"I started feeling constipated. At first I thought it was normal – what everyone went through. But I was constipated all the time. It was getting quite bad – every half an hour I had to rush off somewhere. I kept feeling I wanted to go but I couldn't go."

The explanation of his symptoms came after he returned home to Cheltenham. He went to see his GP, who suggested he might have a polyp – a benign growth in the colon – and referred him to a specialist. The specialist examined him and saw immediately that he had a huge mass in his colon. Its presence was obvious enough not to require tests for cancer. That was why he had kept wanting to go to the loo. It was the tumour. Obviously he couldn't get rid of it – but he kept trying.

"It was a bit of a shock. I had been expecting a polyp, not cancer. I was on my own [when he got the news] and you have all the connotations of the C-word. I should really have gone with Vanessa."

Nicholas was 55, an architect who shared a practice with a partner, and had four children aged 15 to 21. He had a lot to live for – and a lot to lose. The specialist explained that though the news was obviously a blow, if the cancer had not spread it could be a straightforward matter to cut it out.

He was sent for a CT scan which showed 20 lesions on his liver, as well as the huge tumour in his colon. The cancer had spread. The radiologist told him he was sorry but he didn't see how the surgeons could operate. The bad news had just got a lot worse.

"To be operable you want the cancers in the liver to be grouped in one area. You can remove up to three quarters and it will regenerate. But in my case it was inoperable."

With chemotherapy, he was told, he might live 18 months. Without it, he could be dead in nine months. It looked, he said, as if his time was up.

He and Vanessa decided they had to tell the children, after advice from a friend who had been in a similar position. "Don't try to pretend," the friend had said. Two were at university, one was about to start and the youngest was still at school. "We called them all back and we told them. They were incredibly brave. They all wanted to be around and to know about it and to be involved."

Then began a punishing round of chemotherapy combined with a new monoclonal antibody, cetuximab, which, fortuitously, was being trialled in Cheltenham. Treatment for cancer involves a process of progressive poisoning – to kill the cancer and not, it is to be hoped, the patient – requiring weekly visits to hospital to be topped up with toxic drugs. "For three months I lay in bed at home, reading, listening to music and being looked after hand and foot," he said. His wife, Vanessa, is a former nurse.

There was one factor playing in his favour. Fortuitously, six months before he was diagnosed, he had taken out private medical insurance. The cost of his treatment was therefore covered – but so too was the cost of seeking a second opinion. He went up to see a specialist in London who advised him that if the chemotherapy reduced the 20 lesions on his liver to 10, his condition might be operable, using a technique of radio-frequency ablation which involves zapping the tumours with a beam of x-rays. "To be offered that hope was a real psychological boost. It had not been mentioned in Cheltenham. The specialist might have been on the optimistic side but it was of huge benefit to me in getting through. I think I am a positive person."

After three months of treatment, a scan showed a dramatic reduction in the lesions on his liver – from 20 to five – and the tumour in his colon had shrunk. A second specialist he consulted at the Royal Marsden hospital in London told him the treatment was working so unusually well that he must stay on the cetuximab, even if it meant paying for it. "It will make the surgery so much easier if the chemotherapy does the job for us," the specialist told him.

For a further three months he paid up – £1,000 for each injection once a week. His private medical insurer would not cover it because the drug had not been approved by NICE – the National Institute for Clinical Excellence (it has now). It proved to be one of the best investments he had ever made.

"I came off the drug in June 2008 and had another MRI scan. There were no tumours visible anywhere. The doctors told me that as soon as I had recovered my strength [from the effects of the chemotherapy] I could have surgery."

He finally went under the knife at a private hospital in London in August 2008. Two surgeons were present, one to excise the tumour in his bowel the other to do the same in his liver. They opened him up and the liver surgeon examined his liver directly with an ultrasound scanner. There was no trace of cancer anywhere. The surgeon's presence at the operation was redundant.

The bowel surgeon checked his colon – and he too could find nothing other than some scar tissue where he assumed the cancer had been. He cut out a section of bowel around it.

"I came home and it took me six weeks to recover. I had a colostomy bag for four months – they said it increased the chances of success by 10 per cent so I chose it. After four months they reversed it. Since then I have never looked back. I have got stronger and stronger."

It is now 18 months after the operation and Nicholas remains well. He goes for check-ups every three months. His London specialist says he is one of only five people with advanced bowel cancer he has seen make a similar recovery.

He has become an advocate of bowel screening, to detect the disease early while it is still possible to treat, and has urged his five brothers and two sisters to get checked out. He was 55 when he was diagnosed, five years below the age at which the NHS bowel screening scheme starts.

"Spotting it early makes it a hell of a lot cheaper than treating one of me. The cost of my private treatment has been well over £100,000. If you assume the costs to the NHS would be about the same – just from the financial point of view it makes screening worth doing, not to mention the human lives involved. I tell everyone I meet to go and get a colonoscopy."

His family have been caught up in his battle. His son George ran six marathons in five days in the Gobi desert with a bunch of friends and raised £75,000 to help fund the research programme of his London specialist. Nicholas himself is, naturally, a fan of cetuximab. "It's bespoke therapy. Everyone's different. About 60 per cent of people carry the RAS gene which means cetuximab should work. If you don't have the gene it won't work."

He gave up his job when he started the chemotherapy and tried every alternative treatment going as part of his strategy to keep up his morale. "I think stress is a big part of this. Removing myself from work was a wonderful release. My wife has a business so we were fortunate for me to be able to do this."

As important, however, was the sequence of events that saw the initial gloomy prognosis replaced, ultimately, by the best possible outcome. Nicholas thinks that sequence was critical to his recovery.

"You grab onto any sliver of hope. I had all the bad news immediately at the start. All the news after that was better. If you suffer a setback at the beginning but then slowly build up on that – well, I think it helps a lot."

Bowel cancer screening: The age debate

If Nicholas Arbuthnott had been screened for bowel cancer it is likely his tumour would have been detected earlier, been easier to treat and with an improved chance of long-term survival. But at 55 he was too young. The current bowel screening programme begins at 60.

Even among the over-60s, only just over half (55 per cent) have participated in the programme – which involves sending a tiny smear of faeces by post to be tested. Yet already almost 4,000 cancers have been detected among the 2.6 million people who have been screened.

The charity Beating Bowel Cancer last month launched a campaign, Be Loud Be Clear, to persuade an extra one million people to be screened in the next two years and for the screening age to be lowered from 60 to 50.

Hilary Whittaker, its chief executive, said: "Screening for bowel cancer is very important. Bowel cancer is the second-biggest cause of cancer death [after lung cancer] so it is a very serious disease. About half of those who are diagno- sed die. But in 90 per cent of cases, if they are caught early, they can be successfully treated.

"It is crucial to have screening in place so that we can improve early diagnosis and save lives."

There are around 36,000 cases of bowel cancer a year and 16,000 deaths. The commonest symptom is bleeding from the bottom but any persistent change in bowel habit, abdominal pain, or lump in the abdomen is a warning sign.

Experts are resistant to lowering the screening age to 50 because 83 per cent of cases occur in the over 60s. But Ms Whittaker argues that it would still be worth it. "It has been a long battle to get this far. There will be better ways of screening in the future. The benefits, both financial and in human terms, will be huge."