Yesterday, I made the decision to have my stomach removed. Of all the senarios one can imagine for their life, this would not have been on the list. Let me back up to explain how I got here. About two and half years ago, Brian, my brother, was diagnosed with diffuse gastric cancer. I won’t speak to what he has been through. That’s his story to tell. It was around January of 2019 that one of his doctors mentioned that diffuse gastric cancer can be caused by genetic mutations. The result of Brian’s genetic testing was the first time I heard of the CDH1 gene. For those interested in the science, the CDH1 gene codes for a protein, E-cadherin. This protein has a number of jobs. One of the main jobs is to help adjacent cells to adhere to each other. More important for this story, it acts as a tumor suppressor, preventing cells from growing or dividing too rapidly. Brian has a mutation in his CDH1 gene. We now know that this mutation is in our family germ line because my genetic tests found that I have the same CDH1 mutation. This means I have a 60-70% chance of developing hereditary diffuse gastric cancer in my life time. The recommended treatment, remove the stomach before cancer develops.
About Hereditary Diffuse Gastric Cancer
There must be other options. Can’t they test for diffuse gastric cancer? The simple answer is “no”. When most of us think of cancer, we think about a tumor. A tumor is a swelling or mass of cells that are growing abnormally. Tumors can be diagnosed by medical imaging. In the case of diffuse gastric cancer, there is no mass of cells. The cells spread beneath the lining of the stomach. The stomach lining viewed by endoscopy, CT, or MRI may appear normal. It is possible to detect these cells through biopsy of the stomach wall. However, the stomach surface area is approximately 800 cm2. In a typical endoscopy, biopsies will randomly examine less than 1% of that surface area. Since there is no clear test for diffuse gastric cancer, the recommendation for anyone with a CDH1 mutation is a prophylactic complete gastrectomy to remove the stomach before cancer occurs.
By the Numbers
Having been trained as a scientist, of course I want to use data to make my decision (NOTE: The numbers presented here are based on my review of on line content. Any errors are or misinterpretations are soley mine.) Hereditary diffuse gastric cancer is one form of stomach cancer. According to the American Cancer Society, about 27,510 cases of stomach cancer will be diagnosed in 2019 and approximately 11,140 will die from this type of cancer. Less than 1% of the population will develop stomach cancer. About 20% of those with stomach cancer will have diffuse gastric cancer and about 20% of those with diffuse gastric cancer will have a mutation in the CDH1 gene. The average age of onset for stomach cancer is 68, while the average age of onset for diffuse gastric cancer is 38. The age range is 14 to 82. According to UpToDate, the risk for developing diffuse gastric cancer in individuals with a CDH1 mutation is 70% in men by the age 80. The 5 year survival rate for stomach cancer is about 30%. If I refused to have surgery, the recommendation is to have an annual endoscopy with biopsies knowing that the absence of pathology only means they did not find cancer, not that I am cancer free. This information, along with my brothers experience is what I used when deciding to go ahead with the surgery.
I am blessed and grateful that I have friends and family that care about me. We don’t always have the time to share what is going on in our lives. And to be perfectly honest, I already know that this topic often depresses the mood of the room and we can’t have that. Thus, I find myself faced with a few challenges. The first challenge I face is, who do I tell? How do you bring this up in conversation? Please don’t be offended if you learned about this second hand. Life may not have placed us in the right time or place to have the discussion. Now that you know, understand that I have no problem answering questions. In fact, as a teacher, if I educate one person, it will be worth the experince. So feel free to reach out. Ask all the questions you want. On the other hand, I’m sure some of you will have questions but are hesitant to ask. So for everyone who can handle the TMI (too much information) that is this part of my life… I give you all that follows. If you don’t have high expectations for fabulous writing, you won’t be disappointed.
Hey, I’m a scientists. I can’t write something without including “acknowledgements”. Keep in mind this applies specifically to the idea to write down my thoughts and expereinces. I will begin with the person who introduced me to Narrative Medicine, Kathleen Ackert, a future, brilliant osteopathic physician and a great story teller. In her description of our first interaction, she taught me to respect the empathy of others. Perhaps someone else will learn about themselves. I also want to acknowledge Ruth Conboy, our Personal Support Counselor. She encourages students to navigate the complexities of medical education through various means including self reflection. My hope is that some self reflection will get me through this.