We know that there are a lot of things to consider from the moment you think you may have hereditary diffuse gastric cancer, so we’ve collected patient resources for you to use every step of the way. If you have questions or suggestions for additional resources, please email foregut@mail.nih.gov.
What is hereditary diffuse gastric cancer (HDGC)?
HDGC is an inherited cancer syndrome — that means it is passed from a parent to their child through their genes (DNA) and that having it makes it more likely for someone to develop a very rare type of stomach cancer known as diffuse gastric cancer.
Here are two fact sheets that will give you more information about HDGC:
What is Hereditary Diffuse Gastric Cancer (HDGC)?
This document provides you with information about HDGC, what to do if you think you have it and what you should know about managing your risk for cancer with HDGC.
Genetic Testing and HDGC
If you think you have HDGC, you will likely seek out genetic testing. Here you will find more information on genes, genetic testing and what it means for you and your family.
If You Have Been Diagnosed With HDGC
If you have been diagnosed with HDGC it is important to seek care at a center of excellence. We highly recommend you find a care team that includes a surgeon with experience specifically in treating HDGC and, if you are choosing to have a complete gastrectomy, one with experience performing complete gastrectomy. We also recommend that your care take place at a center with a multidisciplinary care team to address all of your needs pre- and post-diagnosis and treatment.
Here are three fact sheets to help you and your family gather information about your options:
Questions to Ask Your Genetic Counseling Provider
A genetic counselor is a medical professional with training in medical genetics and counseling. Your genetic counselor will help interpret your genetic testing results and guide you as you look for information about how HDGC might affect you and your family. Here are some questions you should ask your genetic counselor before and after any genetic tests.
Questions to Ask Your Surgeon
There are many things to consider when you are considering a total gastrectomy. Here are some questions that you should ask your surgeon. Remember that your surgeon should be familiar not only with the operation, but with the long-term issues that affect patients after total gastrectomy.
Speaking With Your Family
Because HDGC is passed down from parent to child in their DNA, other members of your family may be at risk. It can be difficult to talk about cancer and cancer risk with family, so we’ve provided a template for how to approach this important subject.
I chose total gastrectomy, now what?
If you have chosen a total gastrectomy, there will be many challenges that lie ahead. Fortunately, you are not alone. Your experienced care team, your friends and your family should be there to support you and answer your questions along the way.
Here are two fact sheets to help you prepare for surgery:
Mental Health in Your Total Gastrectomy Journey
The journey of a total gastrectomy may seem confusing and daunting. Though your experiences will be unique to you, this document lays out common behavioral health challenges to prepare you for what may arise.
Physical Health Tips to Prepare for Total Gastrectomy
Being physically prepared for your surgery will help minimize the risk of complications after surgery and throughout your healing process. Here you will find some information to help you prepare your body for surgery.
Long-term follow-up after gastrectomy
You can expect your recovery from total gastrectomy to take many months, usually from 6 months to a year. Physical recovery (healing) from the surgery itself takes 6 to 8 weeks. However, learning how to eat and drink differently takes time, and there are many physical and psychological adjustments that will take time as well.
Remember that recovery may not always feel “linear.” That is, it may not always feel like your progress is moving forward at a steady rate. It may feel like your progress at one month after surgery is better than expected, but that at three months you may feel that recovery isn’t going fast enough. Every patient’s experience will be different. Remember to talk to your care team if you have any concerns.
Here are five fact sheets to help guide your long-term follow-up:
Physical Health After Total Gastrectomy
Not only did you just have a major operation done, but you must also now learn to eat and operate without your stomach, a major organ. Having a total gastrectomy will have implications for your lifestyle. This document will help prepare you for, and guide you through, some of the physical changes you may experience after total gastrectomy.
Diet and Nutrition After Gastrectomy: What You Should Know
This document provides an overview of the dietary changes you will need to make after having a total gastrectomy and explains some of the issues that may arise, as well as tips and tricks to avoid or solve these problems.
Diet and Nutrition After Gastrectomy: Your Plan
This document provides you with detailed charts of which foods in each food group you should eat and which ones you should avoid as you go through recovery and the rest of your life without a stomach.
Taking Medications After Total Gastrectomy
Without a stomach, your body processes oral medications (those you take by mouth) differently. This resource will help you understand how your body may react to different medications now and can help guide conversations about medications with medical professionals, including doctors, nurses, dentists and pharmacists.
Pregnancy After Total Gastrectomy
It is possible to have a healthy pregnancy after total gastrectomy. This document covers some of the considerations for those thinking about becoming pregnant after a total gastrectomy, including diet, prenatal supplements and genetic testing.
Cancer surveillance, or cancer screening, means having tests before symptoms of cancer appear to prevent cancer occurrence. While undergoing total gastrectomy may eliminate your risk for stomach cancer, you may still be at risk of developing other cancers unrelated to CDH1.
It is recommended for women with HDGC to receive annual breast MRIs starting at the age of 30. Colon cancer surveillance should be guided by national guidelines.
There are no recommendations currently for gastric cancer surveillance after prophylactic total gastrectomy. Meaning, there is no role for routine endoscopy or CT scans after you have had total gastrectomy and had a T1a (stage Ia) cancer or less.