Stomach removal eliminates risk of cancer for patient with CDH1 mutation
Jon Grossman’s mother, Alice, was diagnosed with stage 4 stomach cancer in 2015. She passed away three years later.
“During her illness, my mom was selfless, brave and inspiring,” Grossman said. “She also saved my life.”
While undergoing treatment, Alice had genetic testing to determine whether the cancer was hereditary. The results showed a mutation in the CDH1 gene.
Carrying the CDH1 mutation raises the risk — as much as 70% for men and 56% for women over a lifetime — for developing a type of stomach cancer called hereditary diffuse gastric cancer.
Grossman shared that he, his older brother and his younger sister were tested. Only he inherited the CDH1 mutation.
“My results came back in February 2018, just a month after my mom died,” said Grossman, who was just 35 when he got the news. “I knew the recommended course of action was to have a total gastrectomy — removal of my stomach.”
I went from thinking it was crazy to have my stomach removed to thinking it was crazy not to.
At the time of his mother’s diagnosis, her disease was too advanced to benefit from the surgery. Although Grossman had no signs of cancer, the chance of getting stomach cancer at some point in his lifetime was high. A gastrectomy would eliminate the risk.
“I went from thinking it was crazy to have my stomach removed to thinking it was crazy not to,” he said.
Grossman chose the University of Chicago Medicine Gastrointestinal Cancer Risk and Prevention team for his care.
“We help patients who are at increased risk for stomach, colorectal, pancreatic and other cancers of the digestive system to understand their risks, potentially do genetic testing and provide their care in a very personalized way,” said gastroenterologist Sonia Kupfer, MD, who started the program in 2015.
Kupfer said it’s important to manage individuals who have the CDH1 mutation using a multidisciplinary team approach.
In addition to meeting with Kupfer, patients at UChicago Medicine see a genetic counselor, a surgeon, a gastroenterologist who specializes in nutrition, and a dietitian. Women who have CDH1 mutations also get high-risk breast cancer screening and possibly prophylactic mastectomy due to a 42% lifetime risk of lobular breast cancer. Psychological counseling is also available. All patients seen in the clinic are offered participation in the clinic’s registry to enable research.
A surreal decision
Grossman said that after being healthy his whole life, it felt surreal to think about voluntarily subjecting himself to major surgery and lifelong lifestyle modifications. “My medical team was incredible at reassuring me that this was the right decision and at helping me weigh the pros and cons,” he said. “It made me so much more confident in my choice to have the gastrectomy.”
In June 2018, surgical oncologist Kevin Roggin, MD, performed Grossman’s total gastrectomy using a robot-assisted approach. After removing the entire stomach, Roggin reconnected the end of Grossman’s esophagus to the beginning of his small intestine, so he could continue to eat and swallow.
“Our unique robotic approach offers patients needing prophylactic gastrectomy a minimally invasive option identical to the surgery we historically performed using larger incisions,” Roggin said. “It’s an example of the innovative surgical techniques we use at UChicago Medicine for patients with cancer and conditions that predispose them to malignancy in the future.”
Thriving without a stomach
The stomach accommodates large meals, starts food digestion and delivers small, metered amounts into the beginning of the intestine. It produces a protein that is required for the absorption of vitamin B12 and regulates the release of insulin to promote sugar absorption. Without a stomach, undigested food travels rapidly into the small intestine.
“Changing to small meals that are low in simple sugars is the key to eating without a stomach and Vitamin B12 supplementation is required lifelong,” said Carol Semrad, MD, who heads the adult nutrition support team at UChicago Medicine. “A knowledgeable registered dietician is essential for diet education and management following a gastrectomy.”
Grossman had to adjust to a new daily rhythm of eating between five and 10 times a day. At first, he struggled with figuring out the right volumes and types of foods to eat. “Now, I tend to focus on foods that are easy to digest, calorie dense and low in added sugars. My go-to is a protein smoothie with peanut butter and hemp seed.”
He found support and information from other gastrectromy patients through a CDH1 mutation Facebook group. Recently, he created a blog called CDH1 gene to share his story and offer advice on living without a stomach.
“I’ve found it’s therapeutic for me to get these things off my chest,” Grossman said. “But more importantly, I hope the blog is benefiting others who are going through what I went through — deciding if and when to have the surgery and how to cope afterward both mentally and physically.
“It’s nice to have other people to talk to and to hear about their experiences,” he added. “This is one way I can give back. I want to make the experience better and more positive for others going through it.”
Cancer Risk and Prevention
The UChicago Medicine Comprehensive Cancer Risk and Prevention Clinic is dedicated to identifying and caring for individuals who have an increased risk for cancer due to family history, medical and genetic factors, and/or lifestyle influences.Learn about cancer risk and prevention services