Prophylactic Total Gastrectomy (Preventive Complete Removal of Stomach)
Hereditary Diffuse Gastric Cancer (HDGC) is the type of gastric cancer caused by a mutation in the CDH1 gene. Because it is nearly impossible to detect at an early stage, the recommended procedure to prevent the development of this cancer in CDH1 gene mutation carriers is prophylactic total gastrectomy. The reconstruction is referred to as a Roux-en-y.
The diagrams below show the anatomy before and after reconstruction. The part of the small bowel that is initially cut at the end of the duodenum is what is extended straight up to meet the esophagus. That cut end of the duodenum is then reconnected to the small bowel. The procedure takes 4-5 hours followed by a hospital stay of 7-12 days. No food or drink is permitted for the first 5 days, not even an ice chip! The new plumbing configuration needs time to heal (seal) as leakage can be lethal. An x-ray test checks for leaks before drink and food are permitted. The first 8 weeks following surgery can be difficult as it usually hurts to eat, but it is all part of the healing process.
<<< Click on the image to enlarge.
View an interactive graphic of the operation to prevent cancer
Life after Surgery
The goal after surgery is to find a “new normal.” In the beginning, eating can be uncomfortable and even painful, and many must force themselves to eat. Hunger as we know it no longer exists. It is replaced by feelings of weakness and emptiness. At first eating is out of necessity, then habit, but eventually the desire to eat returns.
Many people experience symptoms 30-60 minutes after eating caused by rapid entry of food into the small intestine. Symptoms include nausea, vomiting, cramps, abdominal pain, diarrhea, and feeling full after eating only a small amount. Later symptoms may occur 90 minutes to 3 hours after eating caused by a rapid rise in blood sugar and then a rapid decrease in blood sugar. These symptoms may include sweating, fast heart-rate, and weakness, feeling tired or mental confusion. Nausea, heartburn and gas are also common.
Most symptoms can be controlled through eating habits and dietary changes. To avoid symptoms it is necessary to eat 6-8 small meals daily to avoid eating too much at one time. Drinking 1 hour before or after a meal rather than with a meal is recommended. Eating small amounts of food, taking small bites and thoroughly chewing is a must. Food tolerance varies by individual; learning is through trial and error. Few can tolerate foods high in sugar.
Permanent weight loss of 20% of total body weight will typically occur within the first 6 months. Due to this rapid weight loss many develop gall stones, ultimately requiring removal of the gallbladder. Osteoporosis becomes a concern. Maintaining proper vitamin levels is a challenge. Chewable vitamins help, as will occasional iron infusions. Monthly B12 shots are critical as it is impossible to absorb B12 without a stomach. Consuming enough calories to maintain activity levels can be difficult. Nutritious, high calorie, low sugar foods provide the best bang for the bite. Hmmm, just finding that can be a challenge!
It may take one to two years, but eventually the body seems to adjust to the absence of the stomach. Preventive Total Gastrectomy is considered curative for HDGC. The best part about life after surgery . . . is life!