Total gastrectomy surgery can sound like a crazy recommendation. When I first heard that I might need to have my stomach removed, my first thought was “no way.” That’s crazy. Now that I have had one, I have no regrets. I am not alone. The research supports this. So does my experience talking with other stomachless individuals.
In fact, my attitude went from total gastrectomy surgery sounding like torture to now knowing that it is the most luxurious thing I could do for myself. Luxury, you may ask?
Yes, luxury is “the state of great comfort and extravagant living.” I take great comfort in knowing I will not get stomach cancer. Plus, we live during a time when technology has advanced luxuriously far. People have learned how to detect genetic mutations, correlate them with likelihood of cancer occurrence, and also can remove what most people assume is a vital organ to prevent cancer occurrence. I don’t even know most of the people who have contributed to this amazing research and development, yet I am benefitting from their work. Others before me did not have that option. To me, that’s luxury.
However, when I first learned about total gastrectomy surgery, luxury was not a word I would have wanted to believe was applicable to my family’s situation. Had you told me total gastrectomy was a luxury, I would have believed you were crazy.
When I first heard about the procedure, I researched online what people said about living without a stomach. For instance, I read firsthand reports online of people who had already had their stomach removed. They wrote about mental health challenges, having to get vitamin B12 injections and iron infusions, and also about dealing with digestive issues.
None of that sounded worth it to me. Indeed, I was a healthy and active 32-year-old. I was incredibly low maintenance when it came to health issues. So why would I voluntarily turn myself into someone with high maintenance health needs and undergo what seemed like a risky procedure?
I knew nothing about hereditary diffuse gastric cancer or CDH1 mutations.
However, after watching my mom suffer from hereditary diffuse gastric cancer, my outlook changed dramatically. My mom loved life more than anyone I know. She loved spending time with family and friends. She celebrated other people’s achievements more than her own. The first one to volunteer to help others, she embraced life every day in a way that was infectious. Proof of this: over 750 attended her funeral. She wasn’t a celebrity. Rather, she left everyone she met with an energy for life rarely found in others.
Perhaps she had this zest for life in part because her mother died at 63 years old and her father had a debilitating illness around that same time that rendered him invalid for the next 20 years. He carried a CDH1 mutation. However, we didn’t know at the time. He didn’t develop stomach cancer. Nor did he show any signs or symptoms that would’ve revealed he carried a CDH1 mutation. Plus, doctors discovered the connection between CDH1 mutations and cancer toward the end of his life. Had we even heard of it by then, we had no reason to think it would somehow impact our family. He died at 89 years old of causes unrelated to CDH1 mutations.
Perhaps experiencing the loss of her mom, and essentially her dad too, at such a young age impressed upon my mom how fragile, fickle, and fleeting life can be. At least, that’s my interpretation. I believe that my mom reacted to her mom’s young death, and her dad’s young debilitating illness, by shedding any ego and unhealthy selfishness and replacing it with life and selflessness. That’s why she was able to profoundly impact so many people in her life in her own special way.
My mom was only 31 when her mom died and dad grew ill. Now, here I sit after 36 years of life writing about my dead mom. I am starting to understand her in ways I never before imagined. I believe that I am experiencing what I suspect my mom did when she was 31. Unlike her, however, I know that my mom’s death is potentially linked to mine. I carry the same CDH1 mutation that caused her to die young.
Unlike my mom, who didn’t know she carried the CDH1 mutation, I had the chance to ask myself whether to have total gastrectomy surgery. She never even had the chance. I have no regrets about having my stomach removed. What initially sounded like torture now I know is a luxury. I don’t take it for granted and hope I never will.
Doctors diagnosed my mom with stomach cancer in March 2015. It blindsided our family. Although she had been dealing with digestive issues for months, she had been healthy her entire life. We didn’t know of any family history of stomach cancer or any other illnesses. She’d even been monitoring herself for breast cancer for years. Turns out she’d been monitoring the wrong organ.
In 2015, my mom was having terrible acid reflux and would get full after eating only a couple of bites of food. Later, she started having difficulty swallowing. These are all symptoms of diffuse gastric cancer. But, being so tricky to diagnose and with nothing showing up as odd upon endoscopy or in her bloodwork, the doctors just increased her Prilosec. This disease is so sneaky!
Eventually, she went in for gallbladder surgery. Upon removing her gallbladder, the surgeon noticed cancer had developed on her gallbladder. He knew, however, it wasn’t gallbladder cancer. After days of trying to diagnose the type of cancer, doctors eventually diagnosed her with diffuse stomach cancer that had spread to the peritoneum.
For the first year, she did great. She responded to the chemotherapy well. Indeed, her cancer did not progress. Plus, the side effects seemed minimal.
Because of my mom’s persistence, and because of her oncologist’s eventual recommendation for genetic testing, we learned that she carried a CDH1 mutation. Her three siblings researched their options. Among the information discovered were the 2015 guidelines for CDH1 mutation carriers.
Those guidelines strongly advised CDH1 mutation carriers to have a total gastrectomy surgery to prevent stomach cancer. Indeed, here’s what the guidelines say: “Prophylactic gastrectomy should be strongly advised in carriers of a proven pathogenic germline CDH1 mutation.”
Some of the reasoning stated in the 2015 guidelines: “Given the high mortality associated with invasive disease, prophylactic total gastrectomy at a centre of expertise is advised for individuals with pathogenic CDH1 mutations.”
Indeed, before reaching 80 years old:
- males have a 70% chance of developing gastric cancer
- females have a 56% chance of developing gastric cancer and
- Females have a 42% chance of developing lobular breast cancer
We also learned that it is very difficult to detect hereditary diffuse gastric cancer at an early stage in its development. As reported by many (here’s one example), early stages of gastric cancer are difficult to detect because patients often times lack symptoms, the microscopic cancer cells don’t cluster (they’re diffuse), and endoscopy is likely to not find any cancerous cells. That is, however, despite most CDH1 carriers having at least one malignant cell already in their stomach tissue when they have their stomach removed.
Furthermore, we kept hearing, and experiencing, that diffuse gastric cancer is very difficult to treat. As stated by at least one publication: “Those who develop symptomatic invasive diffuse carcinoma have an exceedingly poor prognosis, with only 10% expected to have curable disease.”
The 2015 guidelines say the same. Plus, those say that the “5-year survival rate still does not exceed 30%.”
After doing their research, none of my at-risk aunts and uncles waited long. All three had genetic testing soon after learning about the connection between CDH1 mutations and diffuse gastric cancer. Unfortunately, my mom’s older sister and younger sister each tested positive for the CDH1 mutation. Luckily, their brother does not have the mutation.
In May 2017, my mom’s younger sister had her total gastrectomy. By this time, my mom’s health had significantly deteriorated. She was good at hiding how much she was actually suffering. However, she started to regularly experience blockages in her gut. This made it difficult for her to eat. Hence, her nutrition suffered and so did her energy. Plus, it appeared that her cancer was growing more aggressive. It was becoming harder to hide.
Meanwhile, my aunt was struggling with her total gastrectomy. From May until September, she was in and out of the hospital dealing with strictures and other surgery-related issues. However, my aunt eventually started improving and eventually resembled her pre-surgery self.
In August 2017, one of my cousin’s had his total gastrectomy. He also had some surgery-related complications in the following months. Though like my aunt, he was generally improving. Soon, he was thriving again.
My mom, on the other hand, was getting progressively worse. Her gut blockages became more frequent and severe. Also, she developed malignant ascites, which is a fluid containing cancer cells. The fluid builds up. It caused her great discomfort. To give you an idea, before each draining, she looked 4 months pregnant. That’s how much fluid would build up. It was heartbreaking watching my mom slowly die.
In January 2018, my mom died of hereditary diffuse gastric cancer. My aunt and cousin were thriving. Despite my mom frequently urging me to have my genetic testing done, I hadn’t yet been tested for the mutation by the time she died. However, I always thought she knew I carried it, especially after both my siblings tested negative for the mutation a year earlier.
In early February 2018, when I learned that I carry a CDH1 mutation, having total gastrectomy surgery was a no-brainer to me. I needed to have a total gastrectomy.
I have absolutely no regrets about deciding to have my stomach removed. This is consistent with recent research on this very issue.
In 2016, researchers in Canada published a paper. It is entitled “Prophylactic Total Gastrectomy: a Prospective Cohort Study of Long-Term Impact on Quality of Life.” In it, the authors report on answers in a questionnaire from eighteen patients about total gastrectomy. Of the thirteen patients who opted to have a total gastrectomy, most patients expressed little regret. Indeed, in the words of the authors: “The inclusion of an assessment of decisional conflict is welcome given the magnitude of the decision and it is interesting that most patients expressed little regret.” Therefore, although having total gastrectomy surgery is a life-changing decision, the thirteen patients expressed little regret about having their stomach removed.
Please, however, do not confuse my “no regrets” outlook with the notion that total gastrectomy will result in no change in your life. If my and my family’s experience is any indication, you will no doubt have some long-term mental and physical challenges. Indeed, the paper mentioned above that reported on the questionnaire answers says: “While most patients do not experience negative psychosocial consequences following [total gastrectomy]], mild physical symptoms persist and may affect long-term [quality of life].”
Although you may have challenges, those will likely be insignificant to the challenges you would face upon developing diffuse gastric cancer. Plus, even relative to your pre-surgery life, the long-term lifestyle modifications are likely to be fairly minimal. For instance, one year out from my surgery, I eat normal meals, maybe just a little bit smaller portions. I exercise like I did before surgery — yesterday I ran 4.5 miles in 39 minutes. I don’t drink alcohol, but I could if I wanted to.
The bottomline: not having a stomach is not so bad. It’s the most luxurious thing I have ever done.
Here is a video from the Cancer Research UK Organization that has really helpful tips on how to eat after total gastrectomy.