In this podcast episode, Ellen interviews Johanna, who speaks about her and her family’s experience with gastric cancer, genetic testing and prophylactic surgeries. Johanna was 26 when she had her stomach prophylactically removed. She shares her decision making process and what the experience was like post-surgery. Johanna originally sought out genetic counseling due to her family’s strong history of gastric cancer. Unfortunately, this history was not strong enough to require genetic testing. She had two family members who developed gastric cancer and died in their 50s, her grandmother at age 52 and her father at age 56. The family pushed for genetic testing despite not having the requirements. Her father was the first to receive a positive test, which opened the door for other family members to be tested.
Being positive for a mutation in CDH1 gene means that the patient has a very high risk for developing primary gastric cancer at some point in their lifetime. Screening for gastric cancer is not very effective. It is hard to detect the cancer, even at a late stage, where it is not curable. Lobular breast cancer is another cancer correlated with elevated risk, however screening for breast cancer is much more effective than gastric cancer.
Listen to or download the full story here.