My blog is a bit backwards. As I’ve been posting on a helpful Facebook group called “Support Group for Partial & Total Gastrectomy Patients” (very helpful resource), I realized that I haven’t discussed why getting your entire stomach removed is the correct treatment plan for someone with the CDH1 mutation.
CDH1 also puts you at a 40% increased risk for lobular breast cancer, but I’m not planning on a double mastectomy. Why, you may ask? Because present screening for lobular breast cancer (alternating MRIs with mammograms every 6 months) can catch the cancer in time. But for stomach cancer (linitisplastica), current medicine’s screening doesn’t work. This is a big statement, so let me explain how I got to that belief, along with my team of doctors.
My dad and his cousin both died of stomach cancer. After seeing this, my aunt had annual endoscopy screenings. 4-6 months before she was diagnosed with stage 3 stomach cancer, she had an endoscopy screen come back clear.
I met with Dr. L, a gastroenterologist, prior to my surgery. He said, “I used to think a total gastrectomy was draconian. I have been disproved.” He used to think increased endoscopy screenings would catch the cancer early enough. But every CDH1 mutation patient who screened negative had a stomach pathology positive for cancer post surgery. Dr. L performed 100 biopsies during my endoscopy and found nothing; my post-surgery stomach pathology came back with 4 cancer spots. And as you read, after a stage 3+ cancer diagnosis the average survival rate to 5 years is <25%. My dad, aunt & cousin all survived about 3 years post diagnosis. When I walked into my genetic counseling appointment, I made it clear that if I was positive for the gene, I wanted to pursue the total gastrectomy because current screening is ineffective. I was not doubted or questioned; in fact, I was further validated. At MD Anderson, they draw patients from far away for their high level of experience. These doctors have seen time and time again that today's available screening technology just doesn't work. We asked where the research is today, and they said some work is being one to use a kind of spray dye detection. My prayers are that through continued support of No Stomach for Cancer, screening research will progress and be available. With the average onset of this cancer being 31-38, I'm not waiting. I'll take what available medicine is available to me now. So, why can't doctors detect it? The keyword is diffuse. When you think of most other cancers, doctors can usually find a polyp or tumor or something red and raised...I'm no doctor, but basically you can see something. When the cancer is diffuse throughout the stomach lining, by the time you see something, the cancer has already progressed to stage 3 or stage 4. At this point, it could have metastasized to the liver or somewhere else that might make it too late. And since the symptoms of stomach cancer are similar to acid reflux or are easily attributed to a bad diet, by the time most people get checked out, it could also be too late. That is how I arrived at my conclusion. I hope this discussion can help others with this difficult decision. And for me, if I couldn't effectively argue my reasoning to disbelievers, how could I go into this surgery, no matter how scared I was?