Hello, I first just want to say that I wish you all the very best on your journey with this disease. We have alot of gastric cancer in my family (linitis plastica to be specific), and reading about your victories and your struggles helps me to deal with my own questions, worries and decisions.
I'm just wondering if anyone here has undergone testing for a mutation in the E-Cadherin gene? This mutation has been identified in my family... I have an appointment on may 5th with a genetic counsellor to be tested myself. I have 4 children, so I'm worried about what this means for them. I wanted to share what I've learned about this with you.
-the E-Cadherin gene is known as the tumor suppressor gene.
- A mutation of this gene is also linked to high incidences of breast, lung and bladder cancer in addition to diffuse gastric cancer.
- 83% of women who test positive for the mutation of this gene get stomach cancer.
-67% of men who test positive for the mutation of this gene get stomach cancer.
- Because of the lack of reliability of screening for diffuse gastric cancer, it is recommended that anyone who has the mutated gene undergo a gastrectomy at an age to be determined by your family history.
-MRI's for breast cancer is also recommended, as mammograms are not reliable with the type of cancer associated with this gene.
I look forward to learning more about this, and hope that my surviving family will find that this mutated gene does not exist in them. My fathers immediate family (9 in total) has been ravaged by this disease. My father lost his fight in 2005, never knowing about the existance of this gene. Since his death, his sister was diagnosed and lost her battle last month and his brother is scheduled to undergo a gastrectomy as they have found cancer cells in his stomach. A year before my dad's death, he lost his youngest sister to this disease. No one in my dad's family has lived past 62, in fact... the youngest diagnosis was 23(breast cancer). But now, with testing and screening available to those of us who are high risk... I hope that can change and that we can live to retire and watch our grandchildren play together.
I know there are so many families out there that are fighting cancer... and I just wanted to share a little of our story in hopes that it might help another family.
My warmest thoughts go to out to all of you, stay well and fight hard.
HBN