Cancer survivor backs charity research campaign in memory of her mum
“We both had a ticking time bomb inside us.” Those are the words of cancer survivor Amie Gunn, who underwent what she thought was preventative stomach surgery at the same time as her brother.
The pair had discovered they both carried the same faulty CDH1 gene as their mother but it was only after their stomachs had been removed that they found out cancer had already taken hold.
“I thought I had IBS and Ash had no symptoms at all so without that surgery we’d probably wouldn’t have survived," says Amie, an admin assistant at Cannock Hospital.
Since the operation to connect the oesophagus to the small intestine, which acts like a substitute stomach, both Amie and Ashley have been given the all clear.
Now Amie is looking forward to marrying partner Jacob in August but first she is sharing her story to help highlight a major new campaign from Cancer Research UK.
“My nan and uncle both died of gastric cancer and Mum died after surgery to remove her stomach so I want to do everything I can to support further research. “I always do Race for Life in memory of my brave mum. I think she’d be proud to know that I’m doing my bit to help early diagnosis, genetic testing and of course research," says Amie, from Cannock.
She was just 18 when her mother Louise discovered she was a carrier of the CDH1 gene at the same time as her own sister, Amie’s aunt Alison. The pair had just lost their brother Andrew to stomach cancer – 20 years after losing their mum, Amie’s nan, to the same disease.
Both sisters underwent keyhole surgery to remove their stomachs in 2012 but, for Louise, things didn’t quite go to plan.
“Mum suffered a gastric leak and was rushed to intensive care at the Queen Elizabeth Hospital in Birmingham,” said Amie. “We got a call in the middle of the night saying she’d had a cardiac arrest and that we needed to say our goodbyes to her. It was a huge shock and we dashed to the hospital but she pulled through.
"We were told about the risks of the surgery but we didn’t think anything would happen to our mum.”
Despite ongoing care and support, Louise never fully recovered. She died in her sleep in January 2019, but not before seeing her two children pull through the same surgery.
“I began experiencing digestive problems in 2016 and the same doctor who treated mum saw me and put two and two together,” recalled Amie. “He suggested genetic counselling so my brother and I decided to go together.
“Mum was nervous because she knew we each had a 50/50 chance of carrying the gene. But none of us were prepared for the news that we would both be carriers.”
Both Amie and Ashley were told they had abnormal, pre-cancerous cells which left them with an agonising choice – either face the same surgery that had almost killed their mum or wait for the cancer to take hold.
“It wasn’t much of a choice,” said Amie, who was just 22 at the time. “Without the surgery we had a 75 per cent risk of getting stomach cancer and we knew that, by the time it showed itself, it would be too late.
“I was petrified after what Mum had gone through. But they tried to reassure us as much as possible and said we would have open surgery rather than the keyhole operation mum had.”
Following surgery, tests showed that Amie had 26 separate small areas of cancer cells in her stomach while Ashley had three or four larger masses.
“At first doctors thought I had IBS and Ash didn’t have any symptoms at all so I’m not sure how long it would have taken us to get diagnosed,” said Amie. “My mum felt bad for passing on the gene to us but the fact is that what she went through saved our lives.”
Since surgery, Amie and Ashley have had to get used to life without a stomach but their risk of cancer is now no different to anyone else.
“The main thing I’ve struggled with is I’ve lost a lot of weight and I have to eat small portions,” said Amie. “I can’t have a lot of fatty foods but, apart from that, I live life pretty normally. I’m at a slightly higher risk of breast cancer after the age of 30 so I’ll have screening for that. But otherwise there’s no reason I can’t live a healthy, happy life.”
Amie’s condition means she would have a 50/50 chance of passing on the gene to her children if she were to conceive naturally but, thanks to medical advances, there is no need for her to take that risk.
“Whenever we’re ready to have children they can take my eggs and pick the ones without a gene,” said Amie. “That alone shows how far medical research has come.”
As Cancer Research UK fights back from the impact of the Covid-19 pandemic, a powerful short film has been released as part of the charity's new campaign.
Paula Young, Cancer Research UK spokesperson for the West Midlands, said: “We are incredibly grateful to Amie for her support. Covid-19 has hit us hard, but we are more focused than ever on our ambition of seeing three in four people survive their cancer by 2034.
“This past year proves, more than any other, the value of research and what can be achieved together. Just like science is our route out of the pandemic, science is our route to beating cancer."