A man whose aunt died of cancer, and whose mum then found out she had the illness, had his healthy stomach removed after doctors gave him a stark warning. When a genetic test revealed Ross Marsden’s high risk of stomach cancer, he made a bold choice: to have his healthy stomach removed before disease had a chance to take hold.
The 34-year-old dad-of-one had watched stomach cancer have a severe impact on his family after one of his family members fell ill. “We lost my auntie in 2017,” he reveals. “She got ill in 2015, and her initial symptom was persistent acid reflux. Her GP passed it off and advised taking Gaviscon. I think about this all the time: whether she had a good GP or not, or whether the GPs see this so much that they can’t send everybody to a gastro specialist.”
When his aunt’s stomach issues continued, she was eventually referred for testing where cancer was diagnosed. Her sister, Ross’s mum, then made the connection that their mother had died of stomach cancer and went to see her own GP who promptly sent her for tests, and she was found to also have cancer but no symptoms.
The family went on to have genetic tests and were told they had the CDH1 gene. This encodes the protein E-cadherin which helps cells stick together. Mutations in CDH1 significantly increase the risk of cancers like stomach and breast cancer, and carries a 50% chance of being inherited – a probability that was accurate in the case of Ross and his brother.
“It wasn’t a shock when I was diagnosed, because I already knew that my mum and my two cousins had the gene,” Ross recalls. “I suspected I was probably going to have it. But it was a massive relief that my brother didn’t get the gene.”
Those with the CHD1 gene are between 37% and 83% more likely to develop stomach cancer. New data released by the Less Survivable Cancers Taskforce this month shows that over half (58%) of people in England diagnosed with a cancer of the lung, liver, brain, oesophagus, pancreas or stomach will die from their disease within one year.
Stomach cancer has a 17% survival rate and kills over 4,200 people in the UK each year (per research by Cancer Research UK over the years 2017-2019). The 42% one year survival rate for less survivable cancers (those of the lung, liver, brain, oesophagus, pancreas or stomach) contrasts sharply with the overall one-year survival rate for all cancers, which is over 70%.
Following his genetic testing, Ross decided to take control of his fate. He recalls, “I had seen what both my mum and auntie went through with chemotherapy and began to question how to be proactive. I got offered the total gastrectomy, to have my stomach taken out, and I thought immediately, ‘Just get rid of it.’”
In February 2018, Ross underwent keyhole surgery to have his stomach removed. “I’ve only got this tiny little scar, and then a series of other scars where they put all the different bits in to do the surgery,” he says. “They cut up all my stomach inside, and then pulled it out of this little hole. It’s kind of incredible how they can do that.”
His recovery process was tough as his surgery wounds became infected and took six months to heal. His weight dramatically fell by four stone over that same time – dropping from 16 stone to 12 and he has lost a further two stone since.
While Ross suffers from agonising bile-filled acid reflux since having his stomach removed, he does not regret his dramatic choice to go under the knife. “When they took my stomach out, they did a pathology on it and found 64 pre-cancerous cells in there,” he reveals. “They could have either stayed as they were, disappeared or progressed into cancer. That sort of made my decision feel like it was right. The survival statistics for people who have had stomach cancer is like five years, and I’ve been going seven years since I had my stomach taken out.”
Ross’s story also shows the incredible adaptive abilities of the body. He explains, “I think they tried to create a little bit of a pouch after removing my stomach by stretching my oesophagus on to the intestine. But my oesophagus now is where the stomach used to be and just goes down and is attached to the intestine. I’m supposed to chew more, to do the work my stomach used to do, but I was 16 stone in the past, so I’m used to just going for it.”
He has also had to change his diet and approach to sustenance. Ross explains, “Initially after surgery I didn’t feel hungry. I don’t get that rumbling, empty feeling or anything like that anymore. But I have discovered fibre is not great for me as it can move through me too quick. But I still eat it anyway. I take a lot of vitamins and have a vitamin B-12 supplement injected in my arm every 10 weeks. I can’t get that from the body at all now that the stomach is gone.
“I was told to drink milk and eat bread to put on weight, but since having my stomach taken out, I’ve became lactose intolerant. Then bread just gets stuck. And I suffer from acid reflux. It’s bile acid reflux from your liver. It’s really horrible and 10 times worse than acid reflux. It’s like pure acid just coming up your throat.”
Ross, who works for a specialist company that provides and fits disability equipment in buildings, explained that discovering he carries the CDH1 gene affected the way he started a family with his partner, Lizzie. The couple underwent IVF and preimplantation genetic screening to create embryos that did not carry the gene – with their daughter, April, arriving in 2023, and with the parents able to have peace of mind over her future health.
More recently, Ross has been working with the charity GUTS UK and the Less Survivable Cancers Taskforce to raise awareness of stomach cancer and to improve funding for this largely undiscussed disease. He hopes that sharing his story will help others become aware of the CDH1 gene and the options available to those who may discover they carry it.
“I’m no Angelina Jolie,” he laughs – highlighting the fact that the Oscar winning star sparked a wall of awareness in 2013 over the BCRA1 gene when she tested positive for it and underwent a double mastectomy to reduce her risk of contracting breast cancer.
“I went down to Westminster the other week to speak to MPs about it and I couldn’t think of any famous people who had stomach cancer or the CDH1 gene. An MP was saying she didn’t think about stomach cancer because it’s ‘not one of the sexy ones’ – those were her words. She didn’t say that disrespectfully, but that’s why charities representing the six Less Survival Cancers are campaigning together.”
He also urges anyone with a family history of stomach cancer to get tested – and to consider undergoing the same procedure he had. “Get tested straight away. And keep pressuring your GP,” he advises. “It can be hard to get them to think it’s something more than just heartburn. They will suggest it’s because you drink alcohol or down to your diet. But as soon as my auntie and my mum found out they had the disease, my auntie’s consultant said, ‘Let’s get everyone tested.’ It was quite quick. I don’t think people know much about genetic cancers.”
For information and advice on Less Survivable Cancers, which includes cancer of the lung, liver, brain, oesophagus, pancreas or stomach, visit: https://lesssurvivablecancers.org.uk.
Information about GUTS UK, a charity which campaigns for awareness and funding to fight cancers linked to the digest system from the gut to liver and pancreas, visit: https://gutscharity.org.uk