16 March 2006

Bob’s story

Bob Moon was first treated for a neuroendocrine tumour some 25 years ago. He has gone on to have treatment for another form of cancer and tests for a third.

But today, 59 year old Bob, a former policeman continues to work as a planning enforcement officer, loves holidays and enjoys spending time with his family including three lively grandchildren, as well as indulging in his favourite hobby, playing golf. It is his positive attitude to life that has got him through, as well as the support of his family.

Looking back, Bob Moon believes that his health problems first started way back in the early 1980s.

‘I began to have pains in my lower stomach.

‘They occurred without any particular pattern – before, during or after meals. But it usually resulted in me doubling up in pain and sometimes being sick. I did not have time off work but just put up with the discomfort, although under my GP who was sympathetic.’

But it was not until he had a CT scan a whole two years later that a growth in the bowel was detected and he was told he would need an operation to remove it.

Bob remembers that no-one mentioned cancer or even the word ‘tumour’. In fact he did not discover that he had a carcinoid tumour until some years later.

The operation was deemed a success and after 12 days he was sent home – albeit two stone lighter but with a reassurance that ‘they had got it all and there were no problems.’

It slowly dawned on Bob and Pat that he had actually undergone treatment for cancer, although he remained unclear about the specific form.

‘I quickly regained my strength and weight, due in no small part to my wife Pat and the children not letting me dwell on what had happened or what might have been.’

Regular check-ups with his consultant followed, but says Bob they ‘only served to give me a false sense of well being.’

For this was by no means the end to his problems.

During a regular check up he was asked, out of the blue, ‘do you have any hot flushes?’

In 1988 during a regular check up he was asked, out of the blue, ‘do you have any hot flushes?’

‘On reflection I thought I probably had, and told the doctor.’ But once more Bob was unclear why this was seen to be important.

He was sent for more tests including X rays – and the results delivered some shattering news. Bob had secondary tumours in his liver and would now be referred to a specialist at the Hammersmith Hospital in London.

Even at this point no-one explained to Bob the nature of his condition. ‘No one mentioned cancer, carcinoid or anything specific.’

But the news of the new tumours was a desperate worry.

‘How I drove home, or the route I actually took, some 15 miles, I have no idea.’

He and Pat were left feeling they were facing a decidedly uncertain future but wanted above all, to protect their two children from their fears.

But the outcome was not as bad as they had first thought. Although it was not explained to Bob at this stage, he had carcinoid secondaries that are classically slow growing tumours, in his liver.

‘The new consultant explained that I had a number of growths or tumours on my liver that they could not actually remove. But we agreed that at the time I was relatively healthy and no actual treatment was required but that I would be monitored regularly.’

He says ‘I felt extremely pleased at this news, but I also remember asking if whatever it was I had was terminal. My wife Pat let out a loud gasp and after what was the longest five seconds of my life so far the doctor said – ‘I expect to see you here in 10 years time.’

The doctor said – ‘I expect to see you here in 10 years time.’

‘This was good, but as I was under 40 at the time it also gave me a reality check.’

Bob and Pat decided the best thing was to go on holiday to Gibraltar – to get their heads around what they had been told.

He remained under the watchful care of the Hammersmith for several years, without treatment, and he continued to work, feeling well and almost ‘a little blasé’ about his condition.

There was one just one complication. Bob noticed that his flushes were getting more regular and lasting for longer.

In 1995 Bob left the Metropolitan Police Force for a new job as a planning enforcement officer working for a borough council.

When he was applying for the post he asked his consultant how he should describe his condition. He was concerned that the word ‘cancer’ might not look good on paper, so he was advised to write ‘carcinoid syndrome.’

It was the first time Bob had heard the term. ‘I don’t think it was ever explained to me just that I had a number of tumours on my liver, but to be truthful as long as no-one said they were terminal I was not too interested.’

Bob believes his approach to know ‘just enough’ has helped him get through and remain positive. And this approach continues to this day. ‘So long as I know what I have and the treatments available I am content’ he says.

But the following year Bob noticed that he was beginning to feel less well. ‘It was nothing spectacular but I knew I was not feeling as well as usual.’

His fears were confirmed when he was told that the tumours were becoming active and growing. It was the time for some more treatment.

This time he was referred for embolisation, a procedure that blocks off the blood supply to the tumours in the liver. Bob admits it was not the easiest experience but he was soon back to full health – and, importantly, work.

The treatment gave Bob another three years of stability but in 2000 the tumours began playing up again. By that time his consultant had moved to the Royal Free Hospital – and he was again referred on, this time to Dr Martyn Caplin’s NET clinic.

‘I had an extremely thorough examination and had what I can only describe as an interrogation by two doctors on my medical history!’

Bob was asked if he would participate in a medical trial for a new nuclear medicine treatment that involved blitzing his tumours via ‘internal radiotherapy.’ He happily agreed and made medical history by being the first patient to receive the treatment at the Royal Free. He remembers his patient number was 001.

‘The radiotherapy treatment was a success and I quickly got back to playing golf. I had the regular check ups, CT scans, MRI scans blood tests that we all need to go through and life was rosy again.’

He was also started on a monthly jab to control his flushing.

Bob once more had a quiet spell that lasted until 2003 when another tumour was spotted on one of his kidneys.

‘My mother had lost a kidney at 17 years of age and had only recently died at the age of 88, so I felt only having one kidney was not a problem, as such. But it was still a shock when I was told that it would have to be totally removed.’

It was unfortunate timing as he was about to start a new job – but Bob found his new employers were ‘excellent.’

‘They were very understanding even though I had only been in my new job for three weeks before my operation – although they knew about my liver cancer.’

The major op took place in November, on Bob’s birthday. It turned out that it was not a NET but another form if tumour that could have given him major problems if it had lain undetected and untreated.

It was picked up only because as a NET patient he has regular scans and tests – something he regards as a real positive because it worked to pick up the kidney tumour that might otherwise have gone undetected.

Bob later went through another scare when his doctors advised him to have another form of blood test for a rare hereditary cancer. Fortunately, the test came back all clear and Bob admits the tears flowed at the news.

Today Bob continues to do well even though last year another growth has now been spotted, this time on his pancreas. But he is treating this news with the same positive attitude as he has addressed all his health problems.

‘Nothing is going to stop me living life to the full’

‘Nothing is going to stop me living life to the full’ he said. He salutes his wife Pat in particular who has been a tower of strength over the years.

And he says he has a lot of faith in the medical profession.

‘We can all moan at times and point to specific areas in the NHS that could improve but from my experiences I am very pleased with the attention and help I receive.’

He adds ‘I think we all tend to take our loved ones for granted and if we are not careful become wrapped up in our own problems and forget they have feelings as well. Although I am a very positive person I do have my moments of doubt about the future.

‘I do not know what the future holds except that I plan to continue working full time, have as many holidays as I can, play golf badly for as long as I can and live life to the full – and to watch my beautiful grand daughters grow up.’