Most people don’t realize you can live quite comfortably without a stomach. But I found that out first-hand in 2020, after learning I carry a genetic mutation called CDH1.  

CHD1 dramatically increases your risk of developing both stomach cancer and lobular carcinoma, a type of breast cancer. The risk is so high for stomach cancer that doctors often recommend a total gastrectomy — or the complete surgical removal of your stomach — as a preventive measure. Once the stomach tissue is biopsied, pathologists often find that cancer cells are already present.  

I was only 25 when I got genetic testing. Hearing the results and the gastrectomy recommendation was so shocking. I remember thinking, “Is this even real?” It all just seemed so bizarre.  

Some people opt for increased surveillance, hoping to catch the cancer early. But I decided to take my cancer risk into my own hands. So, I had my stomach removed by Dr. Paul Mansfield at MD Anderson on April 24, 2020. Five years later, I am still cancer-free. And I am so grateful. 

Life can be very normal after a gastrectomy

Unless I told you, you’d never really know that I’ve had a total gastrectomy. I lead a very normal life. And, I can eat pretty much whatever I want, just not in the same portions as other people.  

I do have to watch my sugar intake, though. Since I don’t have a stomach, sugar hits my bloodstream right away. That can prompt a condition called reactive hypoglycemia, in which the body overcompensates for a quick burst of sugar with a very strong insulin response. Afterward, you can experience a dangerous drop in blood sugar and pass out.  

I also have to make sure I get enough protein every day and take vitamins because my body can’t absorb iron or calcium very well anymore. Occasionally, I’ll have a “bad stomach day,” when things are a little more unsettled than usual. But navigating life without a stomach is mostly just about portion size and knowing my limits. 

I’m healthier today without a stomach

I can’t exactly say that I’m grateful for having the CDH1 mutation or needing my stomach removed. But I can say that I’m healthier now as a result than I would be otherwise.  

For one thing, the pathology report revealed that I already had stage I stomach cancer, even though I showed no symptoms. Fortunately, it was found early enough that I didn’t need any additional treatment. I also know that I’m in better shape today than I was before my surgery. I pay more attention to my health now and get regular bloodwork done.  

That’s why I’m sharing my story here on Cancerwise. I want other young people to know that there is life on the other side of this mutation. I also want them to know the importance of getting tested for CDH1, if they learn that someone in their immediate family has it, and of seeking treatment at a CDH1 center of excellence like MD Anderson.  

With this type of gastrectomy, surgeons have to get every last cell of stomach tissue out of you to prevent that cancer from developing one day. That means they have to remove more than they normally would to get clean margins. You also need a pathologist on hand during the procedure to take frequent tissue samples, so they can make certain that no stomach cells are left behind. It’s a super unique situation, so that’s really important. 

The connection between CDH1 and lobular carcinoma

Another thing to be aware of is CDH1’s connection to lobular carcinoma, as it also increases your risk for that disease. The current guideline is to start getting screened for lobular carcinoma either at age 30 or 10 years before the age your relative was when they were first diagnosed with a CDH1-related cancer. For me, that meant age 30, which I just turned last July. I plan to have my first breast MRI soon and will alternate those with mammograms every year. 

Some women with the CDH1 mutation choose to have prophylactic double mastectomies to lower their risk even further. But there are already good screening methods available to detect breast cancer, whereas there aren’t any for stomach cancer. So, I feel like I have a little wiggle room there. 

Returning the favor in facing my worst fears

Even though I was technically an adult when I had my stomach removed, I was still super anxious about the procedure. Dr. Mansfield was so kind and compassionate. He really helped get me through it. I don’t think they make doctors like him anymore. 

Last year, I got an unexpected chance to return the favor. I dragged him out onto the dance floor during my wedding reception in South Carolina, despite his protests that he was not a dancer. At the end of the song, he told me, “Wow. My worst fear was dancing in public, and you got me through it.”   

I replied, “Well, you got me through mine. So, I guess now, we’re even.” 

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