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Thursday, February 4, 2016

The Advisory Board grew silent as one of the caregivers told his story. It was the first meeting of the group the Cancer Support Community brought together to plan the new Stomach Cancer program for the Cancer Experience Registry.He was young, nice looking, straight forward--but the pain and futility of his beautiful wife’s illness and death from stomach cancer was clear as he spoke. The doctors in the group listened and stressed the urgent need for new therapies to improve the prognosis, but we all came away from that meeting with a deeply increased understanding of the importance of connecting to the community of people impacted by stomach cancer (also known as gastric cancer) -- and giving them a voice.

stomach cancer registry

Debbie Zelman was an obvious partner for this work. She has turned her own experience with stomach cancer into a personal mission to increase awareness and improve the outcomes for people with this disease. Debbie’s Dream Foundation has become the national leader in advocating for stomach cancer patients and developing programs to help overcome the isolation this group often encounters. They are now working in collaboration with us to assure that we reach patients and caregivers with stomach cancer, and encourage them to participate in the newly formed special section of the Cancer Experience Registry.

In the United States, stomach cancer is somewhat unusual, accounting for about 37,600 new diagnoses a year-- and it has a low, 28%, five-year survival rate. Most people are diagnosed with late-stage disease. Stomach cancer also brings with it a wide range of physical, social and emotional challenges. Our goal at the Cancer Experience Registry is provide a safe place in which patients and caregivers can identify those issues---and to assure that we communicate what we learn to the broader cancer community.

We recognized that this is not an easy goal to achieve. The relatively low incidence and poor prognosis for stomach and gastroesophageal junction (GEJ) cancer mean that there is not a large cohort of survivors and advocates out there. The obstacles make it even more important that we find ways to reach people impacted by stomach cancer and encourage their participation in the Cancer Experience Registry.

To aid in that goal, the Stomach Cancer Registry launched this week. To learn more or register, visit us here.