Husband Discovers Rare Cancer Gene, Makes 'Brave' Decision for His 5 Kids

The phrase "you never know what's around the corner" gets bandied about a lot in discussions of the unknown, and for one Montana family, the sentiment became a living nightmare. In February 2015, Anders Johnson received news that would change his life forever and the lives of his wife, Jennifer Johnson, and their five children. In a reel on Instagram, Jennifer Johnson, 48, shared how her husband "made the brave decision" to have his stomach removed nine years ago after learning of his overwhelming chance of developing the rare cancer that took his mother's life. The diagnosis came after Anders Johnson's brother conducted extensive research on the rare cancer: hereditary diffuse gastric cancer, a deadly illness closely linked to a mutation in the CDH1 gene. The gene mutation is a harbinger of HDGC, which often remains undetected until it's too late. For Anders Johnson, the genetic odds were not in his favor, and the chances of him developing the cancer were higher than 80 percent, the Instagram clip said.

The Johnsons sought genetic counseling, and they both underwent testing. Anders Johnson tested positive for the CDH1 mutation, which placed him at an imminent risk of developing the same cancer as his mother and maternal grandfather. With the knowledge that the chances of him developing the cancer were highly probable, he faced a daunting choice. He could either undergo a total gastrectomy—a surgery that would remove his stomach entirely—or live with the fact that he may get HDGC. He chose the former because he wanted to grow old with his wife and raise their five children together. Now 53, Anders Johnson is in the best shape of his life "mentally and physically," his wife said. In the caption of the Instagram video, the Montana mom, known as @living_reframed on the platform, also shared a few facts about her husband's condition, including that it took him about three years to recover, he works out every day ("the man is disciplined") and he can still drink alcohol without a stomach. When Jennifer Johnson first shared her husband's story on social media two years ago, the reaction was mixed. "One of my viral videos was met with ignorance and judgment," she told Newsweek. Some critics accused the family of "playing God" or mistrusting faith by relying on medical advice. Others questioned their decision to undergo such an extreme surgery, suggesting that the medical community was motivated by profit. In response, Jennifer Johnson has become a passionate advocate for genetic awareness and education. She has spoken at the Vanderbilt-Ingram Cancer Center alongside doctors and geneticists from the National Cancer Institute and Penn State. "My daughter and I also had the opportunity to speak on Capitol Hill to our representatives on behalf of Debbie's Dream Foundation, asking for continued and increased funding for stomach cancer research," the mom of five added. Today, the response to her husband's story has shifted significantly. "I learned so much from this post. I never knew that one could have their stomach removed and continue to enjoy life. It looks like he's living a good life despite the surgery. Thank you for sharing his story," one Instagram user commented. Another user, who said she'd been diagnosed with the CDH1 mutation, shared that the video was what she "needed to see" ahead of her surgery at the end of the year. Jennifer Johnson said her video was now attracting more of the CDH1 gene mutation community and those affected. "They feel seen, supported and equipped with more options now," she said. "Of course, you still get trolls, but it's changed for the good in the last few years." Is there a health issue that's worrying you? Let us know via health@newsweek.com. We can ask experts for advice, and your story could be featured on Newsweek.