A man with a rare gene that caused his mother's fatal cancer decided to get his whole stomach surgically removed so he can raise his kids - and one day meet his grandkids. Anders Johnson, 41, a pharmacist, had his stomach removed after he tested for the rare gene, CDH1, which came out positive.
CDH1 significantly increases the chances of developing Hereditary Diffuse Gastric Cancer (HDGC). The rare gene caused his both his mother's and grandfather's deaths at the age of 48 and 50, respectively.
Shocked by the thought of not being able to see his children grow up, Anders went through with the gastrectomy in 2014. Anders, 41, aid: "My maternal grandfather died of HDGC when he was 50, and my mother was diagnosed with HDGC, which spread to esophageal cancer when she was 48.
"Since HDGC hides in the stomach lining, her death was preceded by her diagnosis just a few months prior. Genetic counselling facilitated testing specifically for CDH1. My wife and I had to undergo genetic counselling before getting tested.
"Our five children have a 50% chance of inheriting the CDH1 gene mutation."
Research suggests the CDH1 gene mutation is likely to increase the chance of HDGC by up to 85%, despite HDGC making up for less than 3% of stomach cancers. HDGC is also hard to detect in nature because it originates in the stomach lining.
Multiple doctors urged Johnson to have a full gastrectomy, removing the whole stomach organ. Despite initial concerns he went through with it.
Anders added: "The decision was always a given to get the gastrectomy. With five children, I wanted to be around to watch them grow up, have a family of their own, and grow old with my beautiful wife. I was already at the age at which the cancer manifests itself - 40 plus years old - so there was also a sense of urgency."
In February 2015, Anders' brother urged him to get tested, after he himself, tested negative. Anders' wife Jennifer said: "I wasn’t entirely on board because we had five young kids from 13 to seven years old. I was unsure about the route of having a total gastrectomy if he tested positive.
"We found out he was positive, and after seeking multiple experts in the field, they all urged him to have the surgery. As his wife, I was terrified of what our life would look like afterwards.
"Was I going to be able to care for him, our kids, and everything he’s always done for us? I think it was the big unknown that frightened me. He also had a history of depression, and we weren’t sure how this surgery would affect his mental health.
"He healed from the surgery, but did fall into an intense depression and at one point, he was suicidal."
The traumatic journey from finding out about the rare gene, the gastrectomy and the suicidal thoughts are now thankfully all in the past. His post-op life has taken some getting used to over the years, but he has gradually got stronger and stronger.
The first three years were the most challenging as his body had to become used to a new way of digesting and taking in food and nutrition. At first he wasn't able to get the complete nutrition his body needed, which was exacerbated by Dumping Syndrome.
Dumping Syndrome occurs when sugary and starchy foods move too fast into the small intestine. This rapid change in his body led him to lose 30% of his body weight and, on top of that, a lack of energy and the effects went from physical to mental.
Anders said: "Between the loss of weight, pain, energy, and just the connection between nutritional absorption and emotional neurochemicals, there is a TRUE physiological reason for depression, in addition to the circumstances surrounding the whole procedure."
Now, years on from the operation, Anders is living his best life with his family and says he is "healthier than he was before the procedure".
Jennifer added: "The compound effect of his weight loss, energy loss, and constant discomfort took a toll on him the first three years post-op. But now - he is so strong. We’re seven years post-op and spend our summers hiking, fly-fishing, and living a very active lifestyle with our five teenagers.
"He works out at 5:00 am every morning and is in better shape than when we met 29 years ago!
"His family is so proud of him and everything he has pushed through.
"He’s victorious and such a beautiful example of strength and victory for our kids."
