For most of their lives, my father and his brother were totally unaware they carried a rare mutation in a gene known as CDH1.
Like the more well-known BRCA mutations, which are associated with a higher risk of breast cancer, having a faulty version of this gene puts you at a higher risk of developing stomach cancer.
But because neither of them ever got cancer themselves, none of us knew it even existed until 2011, when two of my cousins were diagnosed with stomach cancer in their 30s. Sadly, they both died of the disease. Because of this, I was offered a genetic test which showed I also had the faulty version of the gene.
Obviously, this was a huge shock, but with two little girls, Edith who had just been born and Abigail who was only three, having preventative surgery was an easy decision for me. The risks were too great for me, I couldn’t jeopardise my chance of seeing my girls grow up – miss seeing them start school, go to university, have their own families.
After talking through my options with my doctor, I elected to have my stomach removed as a preventative measure to reduce my chances of developing cancer in the future, even though I had no symptoms.
The seven-hour operation involved joining my oesophagus (the foodpipe) directly to my intestine. I was warned at the time that surgery had some risks and could have a lot of side effects, so I was lucky that my wife Anne completely supported my decision.
As it turned out, this operation could have saved my life. After surgery, tests showed I already had stomach cancer, even though I hadn’t noticed any symptoms. If I hadn’t had surgery, I might not be here today.
After spending a few days in the high dependency unit I made a good recovery and thankfully wasn’t in too much pain. I was also lucky in that I could still produce just enough acid and bile to digest my food, although without my stomach, I no longer took in as many nutrients from the food I ate, and had to eat a much higher calorie diet.
I have now been discharged from the hospital and no longer have to go in for check-ups or tests. It’s been five years since the operation and while it has changed my life in some ways, in other ways it’s become the new normal for me.
The biggest change for me is the guilt I now have in relation to my daughters. I feel guilty that I might have given my children this increased risk – and even though I know it’s not my fault, it has come from me and it is very hard not to blame yourself.
Edith was born in the August before I had my surgery and Abigail had just turned four at the time. While Abigail did grasp a little bit about what was going on, they were both too little to really understand what was happening.
The girls will be tested in their mid/late teens, and as they’re getting older we are considering how to be more open about my surgery, the gene and how that might affect them.
In the meantime, we’ve been involved with the Cancer Research UK team at Addenbrookes at Cambridge who are doing research into this area of genetics looking into ways of developing new diagnostic tests and new ways to treat it too. They have a family day every couple of years which we go along to.
Even though it has been very difficult at times, it does get easier in some ways. I feel as good as I possibly could and looking back over the last five years this has been a gradual process.
But the best thing is that I’m still here to see my two girls as they grow up. Abigail is nearly ten and Edith is six and they’re such lovely little girls. They’re so loving and are such lovely sisters to each other – most of the time! I love spending time with them, love watching them grow and change.
We don’t know yet if they have this gene mutation, but either way, I hope the research being done now to understand this condition will help others like my family in the future.
Dan is supporting Cancer Research UK. Get involved on World Cancer Day, Sunday 4 February, and wear a Unity Band to help fund research right now. Visit cruk.org/worldcancerday