Hereditary Diffuse Gastric Cancer

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What is a total gastrectomy in hereditary diffuse gastric cancer?

A total gastrectomy is complete removal of the stomach.

References
  • Reference: Francis, W. P., Rodrigues, D. M., Perez, N. E., Lonardo, F., Weaver, D., & Webber, J. D. (2007). Prophylactic laparoscopic-assisted total gastrectomy for hereditary diffuse gastric cancer. JSLS, Journal of the Society of Laparoendoscopic Surgeons, 11(1), 142-147.
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Why is a gastrectomy recommended for hereditary diffuse gastric cancer? Can’t I just do screening?

I have hereditary diffuse gastric cancer, how long does a gastrectomy take?

What happens during the gastrectomy for hereditary diffuse gastric cancer?

What is life like after a total gastrectomy for hereditary diffuse gastric cancer?

If I have a CDH1 mutation for hereditary diffuse gastric cancer, what are my options for having children?

Where can I go to get tested to see if I carry a CDH1 mutation for hereditary diffuse gastric cancer?

What is the average age people develop cancer with (HDGC) hereditary diffuse gastric cancer?

What does the endoscopic surveillance screening consist of for hereditary diffuse gastric cancer?

Can I test my child at an age younger than 18 for the CDH1 mutation and hereditary diffuse gastric cancer?

Why is a gastrectomy recommended for hereditary diffuse gastric cancer? Can’t I just do screening?

Unfortunately, the current screening for stomach cancer is minimal and often times will miss the cancer at an early stage.

References
  • Francis, W. P., Rodrigues, D. M., Perez, N. E., Lonardo, F., Weaver, D., & Webber, J. D. (2007). Prophylactic laparoscopic-assisted total gastrectomy for hereditary diffuse gastric cancer. JSLS, Journal of the Society of Laparoendoscopic Surgeons, 11(1), 142-147.
I have hereditary diffuse gastric cancer, how long does a gastrectomy take?

The gastrectomy procedures depends on your case and the surgical team. Your doctor can give you a better idea in your exact situation. The average procedure takes 4-5 hours and will require a 7-12 day stay in the hospital.

References
  • Francis, W. P., Rodrigues, D. M., Perez, N. E., Lonardo, F., Weaver, D., & Webber, J. D. (2007). Prophylactic laparoscopic-assisted total gastrectomy for hereditary diffuse gastric cancer. JSLS, Journal of the Society of Laparoendoscopic Surgeons, 11(1), 142-147.
What happens during the gastrectomy for hereditary diffuse gastric cancer?

During a gastrectomy, the stomach will be removed, and then the first part of the small intestine will be connected with the esophagus.

References
  • Fitzgerald, R. C., Hardwick, R., Huntsman, D., Carneiro, F., Guilford, P., Blair, V., ... & Caldas, C. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of medical genetics, 47(7), 436-444.
What is life like after a total gastrectomy for hereditary diffuse gastric cancer?

Permanent weight loss of 20% of total body weight typically occurs within the first 6 months after a total gastrectomy. Individuals who have their stomach removed are recommended to eat 6-8 small meals a day in order to avoid any symptoms that may occur from food entering the small intestine too quickly.

References
  • Fitzgerald, R. C., Hardwick, R., Huntsman, D., Carneiro, F., Guilford, P., Blair, V., ... & Caldas, C. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of medical genetics, 47(7), 436-444.
If I have a CDH1 mutation for hereditary diffuse gastric cancer, what are my options for having children?

There are a couple options when family planning. One option is to adopt or use a sperm or egg donor. Another option is to have biological children, and know that there is a 50% risk that each child could inherit this mutation. Another option is having preimplantation genetic diagnosis (PGD), which involves in vitro fertilization. Through the process of PGD, embryos can be checked to see if they contain the CDH1 mutation or not, and only embryos that do not contain the mutation will be implanted in the mother.

References
  • Reference: Reference: Schneider, K. (2013). Counseling about Cancer: Strategies for Genetic Counseling. 3rd Ed.
Where can I go to get tested to see if I carry a CDH1 mutation for hereditary diffuse gastric cancer?

To determine if you are someone who would be a good candidate for genetic testing, meeting with a genetics provider is recommended. You can find a genetic counselor near you at: www.nsgc.org or www.cancer.gov/cancertopics/genetics/directory.

References
  • www.nsgc.org
  • www.cancer.gov/cancertopics/genetics/directory
What is the average age people develop cancer with (HDGC) hereditary diffuse gastric cancer?

The average age of developing stomach cancer is 38 years old.

References
  • Carneiro, F. (2012). Hereditary gastric cancer. Der Pathologe, 33(2), 231-234.
What does the endoscopic surveillance screening consist of for hereditary diffuse gastric cancer?

A gastroenterologist will use an endoscope to go down through the esophagus into the stomach and take random biopsies of the stomach. Generally, multiple biopsies will be taken from 5 different sections of the stomach.

References
  • Fitzgerald, R. C., Hardwick, R., Huntsman, D., Carneiro, F., Guilford, P., Blair, V., ... & Caldas, C. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of medical genetics, 47(7), 436-444.
Can I test my child at an age younger than 18 for the CDH1 mutation and hereditary diffuse gastric cancer?

Genetic testing children under the age of 18 has always been controversial in genetic testing. However, since there have been reports of individuals under the age of 18 who have been diagnosed with hereditary diffuse gastric cancer, it has been suggested that genetic testing younger than 18 may be beneficial in some circumstances. The International Gastric Cancer Linkage Consortium agreed that genetic testing can begin at the age of 16 if there has been an early onset gastric cancer in the family.

References
  • Fitzgerald, R. C., Hardwick, R., Huntsman, D., Carneiro, F., Guilford, P., Blair, V., ... & Caldas, C. (2010). Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research. Journal of medical genetics, 47(7), 436-444.

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