6 years ago today I began my journey without a stomach and it was fitting to find myself representing No Stomach for Cancer at the 2020 Gastric Cancer Summit at the place where my stomachless journey began, Stanford. While the data on stomach cancer has not changed much, this small group of committed surgeons, researchers, and advocates are making head way. Over 2 days, the summit have presenting their latest findings. 3 areas really stood out:
Methods and Strategies: Today 60% of gastric cancers detected by the endoscopy are already in the late stages. Doctors from Korea (who unfortunately could not be present because of corona virus, but were able to video conference) are experimenting with new methods of endoscopy to detect cancer earlier. NGH (Harvard University) has been experimenting with a “probe” the size of a Tylenol tablet to capture advanced imaging by working specifically with CDH1 positive patients who have undergone the prophylactic gastrectomy. The National University of Singapore has made good headway in their research of intestinal metaplasia cells which has become a good indicator pre-gastric cancer risk. When I was diagnosed with intestinal metaplasia the imaging technology showed slightly off-color cells within my stomach. Today, NUS is experimenting with fluorescents which causes intestinal metaplasia to glow on imaging devices – it’s amazing and can make a major difference in preventative screening.
Advocacy: Does advocacy work? What is advocacy all about? In 2020 it is amazing to hear the guidelines for gastric cancer nationally are still outdated. This is where advocacy is important. According to data and statistics, if you are young and otherwise healthy complaining of gastric pain, the standard guidelines does not include endoscopy. On the whole, the odds of gastric cancer in young and otherwise healthy patients is low, but for those who fall through the cracks, the consequences can be severe. Advocates from the City of Hope and Hope for Stomach Cancer are working to develop new guidelines to screen for patients complaining of digestive pain. In 6 years, what I have discovered to be most helpful remains true: be your own health advocate especially if you have a family history of early on-start gastric cancer. To this day, when I talk to doctors about “bile reflux” it is typically dismissed as “impossible” or “must be something else”. A few years ago I met Dr. Woo at City of Hope and she really impressed me with her research, robotic surgeries for total gastrectomies and her specific work with CDH1/HDGC patients. She was kind enough to invite me to lunch where I shared my struggles with bile reflux and my experience with doctors who usually dismiss my complaints.
Her response was healing in more ways than one, “I don’t know why we keep telling patients that it cannot be bile, what else could it be?” Dr. Woo proceeded to draw out her working theory on why: the length of the esophagus. Either way, I felt validated and it was nice to not feel stupid for complaint about something I experience everyday. These are some of the battles where advocacy can make a major different today.
New Ideas: As I got to chance to share my story at lunch with Dr. Woo and Hope for Stomach Cancer, I got to share about a crazy idea I had to organize a benefit bike ride from Stanford Hospital to the City of Hope. To my surprise Dr. Woo got really excited and even offered to help me host a welcome party if we can organize it for Stomach Cancer Awareness month in November. I don’t know if this will actually happen, but over the next few months I want to explore what this could look like. I’ll keep you posted!
Stay tuned for my reflections after 6 years without a stomach!