My name is Lauren, I am 25 years old, and I have CDH1. If you don’t know what CDH1 is, it is a genetic mutation that increases your risk of stomach, breast, ovarian, and colon cancer (also prostate cancer for men). With the gene you have the highest risk of developing stomach cancer, you have a 70% chance of developing stomach cancer within your lifetime. And for women, you have over a 60% chance of developing breast cancer in your lifetime. When I found out I had the gene I was told immediately that the first step would be to get my stomach removed, I was 21 years old at the time. I honestly didn’t even know that you could live without a stomach when I was told the news. Unfortunately, the stomach cancer that is associated with CDH1 forms inside the lining of the stomach, making it extremely (almost impossibly) hard to find through biopsies.
I was told by a doctor that I am a ticking time bomb, they had no idea when the cancer would form but once it did, they would probably not be able to help me. I decided at the age of 24 that I was ready to get my stomach removed, and throughout all this, I was also getting yearly testing on my breasts to make sure no cancer was forming there. In March of 2019, I got a biopsy of my stomach, it came back clear. I was even told by a surgeon that I was too young to get my stomach removed, especially considering my biopsy results came back clear. Well, I did not go with that surgeon for my operation, and despite her opinion, I decided to get the surgery done on June 12, 2019.
When the surgery was over, and I went for my follow up with my surgeon, I asked him if they found cancer in my stomach. He said they found stage 1 gastric cancer in three places, and within a year I would have been showing symptoms and it might have been too late. Words cannot describe the sadness, and joy, I felt at that moment. I had caught the stomach cancer right on time. However, I am now living without a stomach and adjusting to a whole new lifestyle. Trust me when I say, it is a HUGE change. This isn’t the end of my journey. I still have to get yearly screening for my breasts, and with doctors’ orders, I will be getting a double mastectomy as soon as I feel comfortable. With breast cancer being so prevalent with this gene they suggest that you also have a double mastectomy, along with the total gastrectomy. I am honestly eager to get that surgery; I think the fact that I had cancer at such a young age has scared me enough to motivate me into getting my breast procedure. If you would like to read about my stomachless life you are welcome to read my blog by searching darichuklauren
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