When doctors told me I had diabetes I didn't realise they'd missed the sinister true cause of my symptoms. Many people only live for four months after they find out the truth - here's what you MUST know to look for

At 40, Ali Stunt was a picture of health – slim, active and busy raising two young children. She exercised regularly, ate well and had no family history of serious illness. So when a routine blood test suggested she had high blood sugar – a condition that type 2 diabetes is usually linked to being overweight – it made little sense.

However, she chalked it up to being ‘just one of those things’ and got on with it.

Ali, now 60, a charity CEO from West Sussex, says: ‘I thought nothing of it at first – just that it was annoying. There was no talk about it being linked to anything more serious.’

She was not initially prescribed medication and was instead advised to maintain a healthy diet and increase exercise – habits she already followed.

But over the following months her blood sugar levels did not improve. Then new symptoms began to emerge.

‘I started getting this strange pain in my back, like a tennis ball pressing against the band of my bra,’ she says. ‘It radiated around to the front, and when I ate I’d get a gnawing pain that left me doubled over.’

Ali returned to her GP repeatedly – seven or eight times in just a couple of months – but she was told she had a muscle strain, indigestion or possibly irritable bowel syndrome. She was advised to take over-the-counter remedies such as Gaviscon, but nothing helped.

The pain worsened and she began experiencing diarrhoea and unexplained weight loss. ‘One day my husband saw me doubled over and took me to A&E,’ she says. ‘But they gave me tramadol and sent me home without any explanation.’

Later, an out-of-hours doctor suggested she had pancreatitis – a dangerous inflammation of the pancreas, a gland in the abdomen that produces insulin, the hormone that regulates blood sugar.

He administered morphine and advised her to follow up with her GP the next day.

When Ali was told she would need to wait four to six weeks for an NHS ultrasound, she decided to seek help privately.

‘The consultant later told me that when he saw me in the waiting room, he knew immediately he was going to admit me,’ she says. ‘I was very, very sick.’

An ultrasound and CT scan revealed a 5.5cm tumour on her pancreas.

She was diagnosed with pancreatic ductal adenocarcinoma – the most common form of pancreatic cancer.

Hearing the diagnosis was devastating – but telling her children, then aged ten and 14, was even harder. ‘They were old enough to Google it,’ she says. ‘One of them shut down and the other screamed that it wasn’t fair. It was the worst thing I’ve ever had to do.’

Within weeks Ali underwent major surgery to remove 80 per cent of her pancreas and her spleen, followed by chemotherapy and radiotherapy.

Looking back, what is striking is that the earliest warning sign – her sudden-onset diabetes – was not recognised for what it might be.

Only later did doctors realise she had never had type 2 diabetes at all. Instead, her raised blood sugar levels had been caused by the tumour damaging her pancreas, affecting its ability to produce insulin and digestive enzymes.

This condition is known as type 3c diabetes – or pancreatogenic diabetes – which occurs when the pancreas is damaged, sometimes by conditions such as pancreatitis or, more rarely, cancer.

Experts say her story highlights a growing area of concern.

Professor Hemant Kocher, from the Barts Cancer Institute, Queen Mary University of London, says the link between new-onset diabetes and pancreatic cancer is increasingly recognised but not fully understood.

One of the challenges is that type 3c diabetes is frequently misdiagnosed as type 2.

Prof Kocher says: ‘There are no simple blood or urine tests that distinguish between the two. At the point of diagnosis, they can appear very similar.’

Some researchers believe a proportion of people diagnosed with type 2 diabetes may, in fact, have type 3c – particularly if they are otherwise healthy and develop the condition suddenly.

Read More

When she raised the possibility of type 3c diabetes with her GP, she was told a diagnosis didn’t exist. It was only after she was referred to an endocrinologist that type 3c was formally confirmed.

Pancreatic cancer remains one of the deadliest cancers, largely because it is so difficult to detect early. In the UK it has the lowest survival rate of all common cancers – around a quarter of patients survive for one year, and just 7 to 8 per cent live for five years.

For many, diagnosis comes too late. Average life expectancy is just four to six months.

Next year, Ali will mark 20 years since her diagnosis – a milestone reached by only a tiny fraction of pancreatic cancer patients. As founder of the charity Pancreatic Cancer Action, Ali has helped persuade health watchdog NICE to include new-onset type 2 diabetes – when combined with other symptoms – in its pancreatic cancer referral guidelines, a significant step towards earlier diagnosis.

Above all, she wants others to be aware of the warning signs – and to push for answers if something doesn’t feel right.

‘You’re a statistic of one,’ she says. ‘It’s your disease, your treatment, your outcome – and the sooner it’s found, the better your chances of surviving.’