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Awareness plea after seven-year wait to diagnose dad’s neuroendocrine tumours - a rare type of cancer

A cancer sufferer who was diagnosed seven years after first noticing pain in his stomach is calling for better awareness of the signs of a type of cancer that is often overlooked.

Tom Griffin, a lecturer from Chatham, was diagnosed with neuroendocrine tumours (NETs) in October 2014.

The diagnosis came seven years after the dad of two suffered stomach pain when he was returning home from a holiday abroad in 2007.

Tom Griffin and his wife Julie
Tom Griffin and his wife Julie

NETs are abnormal growths that develop in the neuroendocrine system, the nerve and gland cells in the chest, pancreas or bowel. Some 4,000 people in England are diagnosed with the condition each year.

Mr Griffin, 56, said: “I felt a dull but excruciating pain to the left-hand side of my stomach. The pain recurred from time to time, when I drank alcohol or had spicy foods, so I thought it might be an ulcer.”

He went to his GP, who diagnosed him with a gastric infection, but seven years later Mr Griffin started to have hot flushes and noticed hair loss on his scalp.

Tests at the Kent Oncology Centre showed Mr Griffin had NETs and a scan revealed two tumours in his small intestine and nine in his liver. He also had other tumours in his lymph nodes and spine.

Mr Griffin had surgery at King’s College Hospital to remove some of them and he was referred to a specialist team at Guy’s Hospital.

He is receiving targeted radiation treatments to help control his symptoms, slow down tumour growth and prevent them from spreading.

Mr Griffin’s cancer is classed as advanced but it is now stable. He said: “I’ve been given a new lease of life as a result of the treatment I’ve received.

"I’m still working and I have the strength and stamina to carry on. I’m in the gym, I clean the car and windows and I’m living a normal life.”

Mr Griffin, who is married to Julie, added: “My care, my treatment and the expertise available to me has been absolutely world- class.

"I’ve received treatment from eminent scientists and experts and they are all keeping me alive.”

Tom was treated by a specialist team at Guy's Hospital
Tom was treated by a specialist team at Guy's Hospital

Symptoms of NETs depend on where in the body the tumours are but can include: stomach pain, changes in bowel habits, shortness of breath, loss of appetite and weight loss.

Treatment depends on where the NET started, its size, whether it has spread, how the cells look under a microscope and a patient’s symptoms.

Experts from Guy’s and St Thomas’ hospitals called for better awareness of the cancer as part of World Neuroendocrine Tumour Cancer Day, which was yesterday, Thursday 10.

Teresa Brothwood, a nurse specialist, said: “Neuroendocrine tumours are a highly complex group of rare cancers that can be bewildering.

"As in Tom’s case, it can often take many years to reach diagnosis.

“NETs are commonly overlooked, misdiagnosed or picked up incidentally after the tumour has spread to other parts of the body.

“Tom’s story illustrates how care within specialist units like King’s Health Partners Neuroendocrine Tumour Service can make a real difference.”

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