Man who had stomach removed to prevent cancer developing says other people in Wakefield may have same genetic mutation and hopes speaking out about condition could save lives

In 2017 Adam Shaw, 39, I found out he is a carrier of CDH1 gene mutation and anyone that carries this gene mutation has a condition called hereditary diffuse gastric cancer syndrome.

He said those people have an 80 per cent chance of developing a rare form of stomach cancer at some point in their lifetime.

He said: “I’m hoping to raise awareness of the condition because it might just save a life.

"A specialist told me that although this condition is rare there will be others out there who are carriers of this gene mutation and don't have a clue about it – they are ticking time bombs.”

This mutation is on his dad's side of the family, who are all from Wakefield, including the Crigglestone, Hall Green and Durkar areas.

In 2003 Adam’s aunty Susan Shearman died aged 51, in 2004 his dad's youngest brother Carl Shaw died at 38 and in 2016 his dad’s brother Nigel Shaw died at 61, all from a rare kind of stomach cancer.

Doctors thought it was strange that all three died from the same illnesses and so decided to investigate and look deeper into it.

He said: “My dad is one of 12 siblings so a large family really, my dad got tested and found to have the gene mutation, I was then advised by doctors to be tested and again mine too was positive.

"I was sent to see a specialist at Sheffield’s Northern General Hospital to be told that there is no screening for this type of cancer as there is no tumour, it grows behind the stomach lining so is kind of invisible to scans.

"They advised me to have the whole of my stomach removed to prevent me from getting cancer at some point in the future.

"I was only 33 at the time and wasn't really keen on the idea of surgery so I said I'd think about it but in the meantime my mum did some research online and found a professor at Cambridge University who specialises in this syndrome and asked if she would see me.”

The experts at Cambridge looked in Adam’s stomach and he returned when the result came back from the lab several weeks later.

Adam, who lives in Barnsley, said: “There was a huge team of people waiting to see me and basically said that if I didn’t have my stomach removed I'd be dead in two to three years.

"I had the operation in February 2018 and have had many complications afterwards.”

The NHS said hereditary diffuse gastric cancer syndrome is rare, with an incidence of 5–10 per 100,000 live births worldwide.

Research from Johns Hopkins Medicine said removal of the stomach would be the only preventative option.

It said: “Because hereditary diffuse stomach cancer is nearly impossible to detect at an early stage, however, the recommended procedure to prevent stomach cancer is a total gastrectomy, or complete removal of the stomach.

"Although this procedure is complicated and commonly leads to weight loss, diarrhea, altered eating habits and vitamin deficiency, it is possibly the only method to prevent stomach cancer.”