Ross’ story – Hereditary stomach cancer

Tell us a little bit about you

“I’m Ross and I’m 34. I live in West Yorkshire with my fiancée, Lizzie, our 17-month-old daughter, April, and our dog, Ted. We had PGS IVF (Preimplantation genetic screening in vitro fertilisation) to conceive April, so we know she is unaffected by CDH1 (a hereditary stomach cancer gene). I work as an assessor and product specialist for people who require hoists to help them with their daily lives.” 

When did you first find out about the hereditary stomach cancer gene (CDH1)?

“In 2015, my auntie was diagnosed with stomach cancer and sadly passed away in 2017. My mum was checked and was also diagnosed with stomach cancer. She had chemotherapy followed by surgery to remove her stomach (gastrectomy). After tests, myself, and some other family members, found out that we also carry the CDH1 gene.”  

How did it make you feel?

“I was told that I had a high chance of developing stomach cancer. It was a no brainer; I knew I needed to have a total gastrectomy (surgery to remove the stomach). With stomach cancer running in my family, I felt quite anxious to get it over and done with. I didn’t feel brave, I grew almost numb to it mentally. I just got on with it and didn’t doubt my decision to have surgery.”  

Tell us about your surgery in 2018

“In 2018, I had my stomach removed (gastrectomy). The weeks leading up to my surgery were nerve-wracking. I remember walking into the operating room and thinking that it looked like a science classroom! I had the same surgeon that my mum had for her surgery, so I knew I was in good hands.”  

How was your recovery?

“When I woke up from keyhole surgery several hours later, I felt like I’d only been asleep for 10 seconds. A few days later, I walked to the bathroom, bent down, and felt a sudden, red-hot sensation all down my body. I’d developed an infection in my wound and was hospitalized for another eleven days. At home, the district nurses visited daily until I got to a point where they showed me how to pack my wound myself (treat the wound so it healed from the inside out).   

The whole experience was surreal. When I received the pathology results from my removed stomach, they found 64 pre-cancerous cells. This reaffirmed that I’d made the right decision to have surgery.”  

How has having your stomach removed affected you?

“It’s been a huge adjustment. I can’t eat like I used to and must take prescribed anti-acid medication. At times I was sick most nights and my throat felt constantly raw from the bile reflux from my liver. Thankfully, it doesn’t happen often now. I sleep at a 45-degree angle but find if I slide down bile comes back up. It’s a harsh reminder of what I deal with. But I am here, and that’s what’s important. I’m currently seeing how I get on with my diet as I must eat smaller meals since my stomach removal and some foods I have had to cut out completely.” 

How are you doing now?

“I struggle with extreme fatigue more than anything else, I have B12 injections every 10 weeks (about 2 and a half months) to help and I’m having investigations for inflammatory bowel disease (IBD). I often feel a bit like a duck; calm on the surface but underneath frantically paddling trying to stay afloat! I don’t let on to other people how I feel a lot of the time.”

How do you manage at work?

“My job involves a lot of driving so it’s relatively low impact and my boss has been supportive; however, I find it difficult to manage my energy to last to the end of the day. By the end of the week, I am wiped out energy-wise. I work from home one day a week which helps me manage the fatigue and brain fog.” 

Why are you sharing your story today?

“What my family and I have experienced is huge and I think it’s vital to raise more awareness of the stomach cancer gene (CHD1) and stomach cancer itself. Lizzie and I met in 2018, just after my stomach removal and she’s been by my side through everything. 

It doesn’t just impact me; it impacts my loved ones, my work, how I feel as a parent, and what I can do day to day. I feel exhausted all the time. It’s important to share my reality as I won’t be the only one going through this and want others to know they’re not alone.  

Thank you so much to you all at Guts UK charity! There are loads of people in the community who connect because of Guts UK and it’s so heartwarming to see and know that I’m not alone.”  

Note: People who have close family members (brother, sister or parent) with stomach cancer may have a higher-than-average risk of developing stomach cancer themselves. Contact your GP if you feel this may apply to you and your GP could refer you for genetic testing if required. Cancer Research UK have more information here about genetic cancer risk and testing.

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.