Learning from Stomach Cancer Advocates
On February 23-24, the GI Cancers Alliance joined longtime members Debbie’s Dream Foundation for their annual advocacy day in Washington, D.C.
Founder/CEO Martha Raymond and Patient Engagement Advisor Danielle Burgess spent time with stomach (gastric) cancer patients, caregivers, and family members to hear their first-hand experiences. A fireside chat with the new CEO Amanda Pullinger as well as sessions from Drs. James Goldenring and Lawrence Wu gave insights, research updates, and hope for the community.
Increasing and decreasing rates
Gastric cancer is one of the U.S.’s deadliest cancers, with an overall 5-year survival rate of 38%, and it’s only 8% for a late-stage diagnosis. Globally, gastric cancer is the fifth-leading type of cancer and fourth-leading cause of cancer death, with the highest incidence occurring in Asian countries.
Following a presentation on current stomach cancer rates and trends, one advocate wisely pointed out the irony and confusion about how stomach cancer rates in the U.S. are declining overall—much due to identifying and treating the h. Pylori virus, a known cause of the cancer—however rates are increasing in younger women.
In fact, 30% of all new stomach cancer diagnoses in the U.S. are in young patients.
The conversation reinforced the need for additional research into causes and more treatments. It also highlighted those most at risk: Asian Americans, recent immigrants from South America, African Americans, and veterans.
CDH1
There were many discussions and awareness around the CDH1 gene, which gives someone an increased risk of contracting a certain type of stomach cancer (hereditary diffuse gastric cancer (HDGC)) if they are positive for the mutation. We met several parent-child duos with CDH1 mutations who had traveled to D.C. together, many of them having undergone a total or partial gastrectomy (removal of the stomach). However, despite the daily challenges that advocates live with, hope filled the room as doctors shared about the latest research.
Gastric cancer research
Results from a rectal cancer immunotherapy trial at Memorial Sloan Kettering Cancer Center showing positive results for patients with the MSI-H biomarker were presented, along with other studies and insights about active and emerging biomarkers like MET, FGFR2b, HER2, ctDNA, and Claudin 18.2.
The idea of biomarkers helping lead to non-operative approaches was mind-blowing, and it fired up the advocates to ask for more research funding and congressional support the following day.
Real patient experiences
Throughout the few days, we heard from caregivers who shared about their grief–losing parents, siblings, and spouses within a few years, if not less, of a diagnosis. We heard survivors talk openly about the daily challenges of simply knowing what to wear, eating and managing blood sugar levels, staying hydrated, and fighting a headache when you can’t take certain over-the-counter pain medications.
The community wants people to know that yes–you can live without a stomach! But… it’s not easy, and every patient experiences it differently. The surgery alone is hard, and the quality of life following the surgery can bring many struggles. There is a major need for follow-up and survivorship care.
Standing in solidarity
One fun fact we learned is that both the platypus and seahorse do not have stomachs, and the stomach community rallies around the seahorse as a symbol of solidarity.
The GI Cancers Alliance is so grateful for the invitation to attend this event and learn how we can continue to be the collective voice of the GI cancers community and help represent the experiences and needs of those with stomach cancer.
