Ok, so I've been asked to talk about generic testing. I'm going to explain my personal experience with it, specifically me getting tested and getting my results. At first, I didn't believe any of these genetic mutations were real. So it was really awkward when I first met my genetic counselor. (If you have cancer prevalent in your family you can get a referral for a genetic counselor from your doctor, just ask). I got all my genetic testing done through a company called "Inova", they specialize in genetic testing, and cancer research. My genetic counselor was named Rebecca, she no longer works at Inova because she moved. I remember meeting her and treating her like she was stupid. I laughed at her. I laughed at how she kept saying "if you have this gene it will CHANGE YOUR LIFE DRASTICALLY". And I laughed because I still was in denial about the whole thought of it. I knew my mom had CDH1, that was a definite. But I didn't believe the statistics associated with it, especially regarding stomach cancer. I was actually mad that they were telling my mom to get her stomach removed due to her testing positive for CDH1, I didn't want to believe any of it.
So, my brother got tested first. He got his results and they were negative, and I'm so happy they were. At the time I thought I would for sure test negative too, I mean my brother tested negative so I was convinced I was fine. I was wrong.
The process of getting tested is not as intense as you think. You literally just go into your genetic counselors office and spit into a vial. I remember that my spit had blood in it from my gums. At the time I was smoking the "Vuse" vape pens intensely, (don't do that, they can make your gums bleed). And that's it. She took the vial and sent it off for testing. I was told I would get my results in a week or so, and we left. They didn't take blood, didn't do any scans, they can determine if you have the mutation based on your spit. This also seemed really weird for me. My husband recently admitted to me (post surgery) that he didn't believe a vial of spit should determine whether you get your stomach removed or not. But he admits that he's happy I got the surgery, obviously, or I could have died. And he regrets doubting the genetic testing process, and my results. My father also recently apologized to me, he didn't believe I needed to get my stomach removed at all. He didn't really understand the gene. He now thanks me for not listening to him, and so does my husband.
I was given my results over the phone, Rebecca called and said I tested positive. I had a gut feeling I would, but I was still really upset about it. My life changed in one phone call, I will never forget that day. I will never forget the overwhelming emotions that filled my body and mind. I will never forget how hard I cried and screamed. I will also never forget the way I felt when my sister tested positive for the gene too... I was heartbroken.
I know that generic testing sounds scary, and it really is. But the process of doing it is so easy, if you think there is ANY chance you may have a genetic mutation please get tested. My mother and me are living proof that it can save your life, and it can save yours too.
If you have any questions please reach out to me! I would be happy to answer any of them!
