A few weeks ago, I reached out to my aunts and uncles (on my dads side of the family) to let them know this could affect them and their families. Out of the 5 of them, not one has responded. I would just hate for somebody else to get this awful stomach cancer when it could have been prevented had they chose to. And I was hoping they would want to make informed decisions regarding this potential risk. Since they didn’t respond I feel the obligation to reach out to all my cousins, which I did today. I got a couple responses right away, which I am feeling good about. One cousin said she is going to get tested as soon as possible while her brother is showing interest in getting tested as well. This isn’t super impressive as I have dozens of cousins on that side of the family. But maybe the 2 interested cousins with get the ball rolling and the others will realize they might want to know more about this. Maybe they want to know that if their parents (my aunts and uncles) have CDH1 they have a 50% chance of having it. And if they have CDH1 they have a very high risk of getting HDGC (hereditary diffuse gastric cancer). And if they do get HDGC it will not be detectable until late stages and is very difficult to treat. And if they have CDH1 each of their kids have a 50% chance of having it. I don’t know, just something I would definitely want to know about if I were in their shoes.
Again, I don’t want a pity party, I just feel responsible for informing them, so they can then make the choice for themselves. It’s difficult to make choices about things you know absolutely nothing about.
Okay, rant over. I apologize for rambling there. Just get kind of worked up when thinking about the family members who I don’t think understand the severity of this genetic mutation. Thanks for listening and have a good night 😉
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