Be NET cancer aware

Monday 7 November 2016

Tom Griffin with his wife Julie.

Experts from Guy’s and St Thomas’ are calling for better awareness of the signs and symptoms of a type of cancer that often goes unrecognised.

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

Tom Griffin, 56, a motor vehicle lecturer from Chatham, Kent, was diagnosed with NETs in October 2014. Tom first noticed pain in his stomach on a flight home from a holiday abroad in 2007.

He says: “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.”

Tom’s GP diagnosed a gastric infection but seven years later Tom started to experience hot flushes and noticed hair loss in seven places on his scalp. His GP carried out a thorough examination and arranged blood tests. After further investigations at the Kent Oncology Centre, Tom was diagnosed with NETs.

A scan revealed that Tom had two tumours in his small intestine and nine in his liver with other tumours in his lymph nodes and spine. Tom had surgery at King’s College Hospital to remove some of the tumours. He was then referred to the specialist teams at Guy’s Hospital, which is part of King's Health Partners Neuroendocrine Tumour Service.

He has been receiving a targeted radiation treatment which helps to control the symptoms of NETs, slows down the growth of tumours and prevents further spread.

Tom’s cancer is classed as advanced but is now stable. He says: “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.

“I’m very fortunate. 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.”

Teresa Brothwood, a nurse specialist for nuclear medicine, says: “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 to the lives of people with NETs.”

Thursday 10 November is World Neuroendocrine Tumour (NET) Cancer Day. For more information, meet our neuroendocrine (NET) team and our patient support groups, the NET Patient Foundation and AMEND, in birdsong corridor at St Thomas’ and Atrium 2 at Guy’s, from 10am to 3pm on Thursday 10 November.

Last updated: November 2016

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