What to Ask a Surgeon Before HDGC Total Gastrectomy?

Choosing the right surgeon for a prophylactic total gastrectomy (stomach removal to prevent cancer) is one of the most important steps in managing Hereditary Diffuse Gastric Cancer (HDGC). Being told you have a high genetic risk for cancer and need your stomach removed is emotionally heavy, and these surgical consultations can be overwhelming. It is highly recommended to bring a trusted friend or family member to take notes so you can focus on the conversation.

Because HDGC is rare, not all surgeons or hospitals have the specific expertise required to ensure a safe procedure, completely evaluate your tissue, and support your long-term recovery. Your goal is to find an “expert center” with high surgical volume, specialized pathologists, and a dedicated multidisciplinary team.

To help you evaluate whether a surgeon and their center are the right fit for your care, bring this list of specific questions to your consultation.

1. “How many total gastrectomies do you and your center perform each year?”

Surgical experience directly impacts your safety. Studies consistently show that performing a prophylactic total gastrectomy at a high-volume center is associated with significantly lower surgical morbidity (fewer complications) and better overall outcomes ^[1][2][3].

• What to listen for: While exact definitions vary, expert guidelines often recommend looking for a surgeon who personally performs at least 15-20 total gastrectomies a year, at a hospital that performs 20-30 or more.
• Follow-up question: “How many of these are prophylactic (preventative) rather than for advanced cancer?”
• Follow-up question: “Do you use minimally invasive approaches, such as laparoscopic or robotic surgery?” Minimally invasive techniques are associated with faster recovery times and lower complication rates compared to traditional open surgery, while still safely removing the entire stomach ^[4][5].

2. “What are your specific complication rates, particularly for anastomotic leaks?”

When your stomach is removed, the surgeon must connect your esophagus directly to your small intestine. This connection is called an anastomosis. An anastomotic leak happens if fluid escapes from this new connection before it fully heals. While this is a known risk of total gastrectomy regardless of the technique used ^[6], an expert surgeon should know their exact leak rate.

• What to listen for: At high-volume expert centers, the target leak rate is typically less than 5%.
• Follow-up question: “Do you use Enhanced Recovery After Surgery (ERAS) pathways?” Specialized centers often use these structured protocols to improve your short-term recovery and optimize outcomes ^[1][7].

3. “Will the pathologist use ‘total embedding’ to examine my stomach tissue?”

This is a critical question for HDGC patients. After your stomach is removed, it must be meticulously examined in a laboratory. The International Gastric Cancer Linkage Consortium (IGCLC) guidelines mandate that pathologists must have specific expertise and use a technique called total embedding (examining the entire stomach lining) ^[8].

• Why this matters: Total embedding is the gold standard required to find tiny, hidden (occult) spots of signet ring cell carcinoma, which are frequently present in CDH1 mutation carriers even if prior endoscopic biopsies were completely clear ^[9][10][11].

4. “How do you ensure no stomach tissue is left behind?”

To completely eliminate your risk of diffuse gastric cancer, the surgeon must remove 100% of the gastric tissue ^[12]. Ask how they ensure the top margin (in the esophagus) and the bottom margin (in the duodenum) are entirely free of stomach cells.

• What to listen for: The surgeon should mention sending tissue to the lab during the surgery—a process called intraoperative frozen section analysis—to confirm the margins are totally clear of stomach lining before they finish the operation and wake you up.

5. “What does the immediate and long-term recovery plan look like?”

A successful surgery is only the beginning. Living without a stomach involves significant long-term physical, nutritional, and emotional adjustments ^[13][14]. Expert consensus guidelines emphasize the need for specialized, long-term management after surgery ^[15].

• Follow-up question: “How many days will I typically spend in the hospital, and will I need to be in the ICU initially?”
• Follow-up question: “If I go home and suspect a leak or have severe dumping syndrome at 2 AM, what is your center’s emergency protocol?”
• Follow-up question: “Do you have a dedicated gastrointestinal (GI) dietitian?” You will need intensive guidance to learn how to eat, absorb nutrients, and manage dumping syndrome (a condition where food moves too quickly into your small intestine, causing nausea, cramping, and weakness).
• Follow-up question: “What reconstruction technique do you use?” Common methods include a Roux-en-Y (connecting the esophagus directly to the small intestine in a Y-shape) or a jejunal pouch (creating a small reservoir to mimic a stomach). Some techniques may offer specific advantages for managing heartburn and dumping syndrome ^[16][17].
• Follow-up question: “Since I have a CDH1 mutation, how will this team coordinate with breast oncology specialists for my long-term lobular breast cancer surveillance?”