Leeds Costco worker with rare 'ticking time bomb' cancer gene told he could die without drastic surgery

Adam Shaw, 39, underwent the drastic operation after scans found he was carrying a gene mutation that brings with it very serious implications.

Following his surgery, Adam suffered a series of complicated medical issues – including an incident which saw him collapse while at work in Costco in Leeds.

He was not the first in his family to be affected by the genetic irregularity. His father, from Rothwell, was also found to be carrying a mutation in the CDH1 gene.

Those who have it are diagnosed with a disorder called hereditary diffuse gastric cancer syndrome, which means they have a high risk of developing a rare form of stomach cancer.

Between 2003 and 2016, Adam’s father, who is one of 12 children, lost three siblings to the cancer. Thankfully, he underwent a successful surgery that mitigated the risks posed by the condition.

But for Adam, who lives in Barnsley, the story has been more complicated. He was advised to get tested for the gene mutation soon after his father’s diagnosis – and it was discovered in 2017 that he was also a carrier.

Adam was seen by a specialist at Cambridge University, who told him that if he did not have a total gastrectomy – the removal of the stomach – he could be dead within two years.

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He said: “I felt completely numb and shell-shocked. It was surreal, I couldn't get my head round it. As far as I knew, I was fit and healthy. So to find out that this was ticking away inside me was a shock.”

He successfully underwent surgery and had 14 months off work. There were several complications that followed, but these were corrected by doctors.

Just over a year later, Adam was back at work in Costco, in Hunslet, when he suddenly began to experience severe pains during his shift. He later collapsed in agony and had to be rushed to St James’ Hospital.

Scans showed a large internal hernia. Adam said he was told his “intestines were strangling themselves”.

He explained: “I was in that much pain that I had to be given morphine. The surgeon told me they wanted to send me to Sheffield, but if they didn’t operate then and there, I could have had 30 minutes to live.

“I threw myself on the operating table because I was in that much pain. The emergency surgery at St James’ saved my life.”

In the six years since the gastrectomy, Adam has been losing weight rapidly.

“I’m very tired all the time,” he said. “I don’t eat much, because it’s like having a very extreme gastric band.”

He added: “When they first removed my stomach, they sent it to a lab to study – and found 52 areas of cancer. I just thought, how didn’t I know about this? I didn’t feel poorly at all.”

Now, he is on a mission to raise awareness about the gene mutation, as he said some carriers may be none the wiser.

“I’ve spoken to GPs who’ve never heard of it,” said Adam. “Although it’s rare, a lot of people still have it – and it’s like a ticking time bomb waiting to go off.

“I want to raise as much awareness as possible. If it means I can save a life, I’d consider that a job well done.”