Cancerwise

In 2008, my eldest sister died of stomach cancer. She was only 31. But her California doctor told our family we were “lucky,” because this particular type of cancer was extremely rare and not hereditary.

You can imagine how surprised we all were when my mom was diagnosed with stomach cancer 15 years later — and her doctor asked why none of us had ever undergone genetic testing.

That comment prompted the rest of us to get tested right away. We discovered that my mom and I carry the CDH1 mutation, which significantly increased our risk of developing both stomach cancer and lobular carcinoma, a type of breast cancer.

Knowing this gives me a slight advantage when it comes to cancer prevention. But I still wish we’d all gotten tested sooner.

How I got to UT MD Anderson

I was 40 when I found out I carried the CDH1 mutation. The standard of care is to have your stomach removed, a procedure called a prophylactic total gastrectomy. But I didn’t want to do that.

Instead, I decided to start getting frequent upper endoscopies. I told myself that as long as my doctors in Dallas couldn’t find any cancer, I was in the clear.

The first problem is that’s not how this cancer really works. With CDH1, it’s not a matter of “if,” but more of “when” it will be found. Plus, the cancer may lay dormant for years — even decades — before it becomes active. So, the cells were likely already in my stomach. It’s just that no one had found them yet.

The other problem was that none of my local doctors would perform the necessary endoscopies. One said I’d bleed out if he actually took the number of biopsy samples required to do this procedure properly. Another agreed to do one reluctantly, but admitted afterward that she wasn’t really equipped to handle what I had, so she didn’t want to do another. I needed a specialist.