500 Calls and Counting: A Love Letter to Our Esophageal Cancer Community
April is Esophageal Cancer Awareness Month, and we want to tell you about something remarkable our Smart Patients esophageal cancer community has built entirely on their own: a twice-weekly Zoom call, open to anyone, for as long as people need to talk.
These calls grew out of something we see again and again at Smart Patients: people find each other in our online communities, and then they want more. They want to hear a voice and see a face. For patients with esophageal cancer — who may be recovering from major surgery, managing feeding tubes, or simply too far from a major cancer center to find anyone who understands — getting to an in-person support group can be impossible. So this community did what Smart Patients communities do: they built what they needed, where they already were.
Here's what this community — not Smart Patients, but the patients and caregivers themselves — built from scratch to help each other:
1. The Zoom call is a first responder, not an afterthought.
"If you would like to speak to some of us who have been through this surgery and recovered, join our Zoom meetings.... There are some very good people in that group that have had similar experiences."
When someone arrives on Smart Patients newly diagnosed, they usually are frightened and overwhelmed. The community welcomes them and within the first few replies, the Zoom link appears. It’s shared reflexively, at exactly the right time, to hundreds of people.
2. A steady place in an unsteady world.
"Zoom call at 9am Eastern on Sundays, 6am for me in California."
Smart Patients is always there (flexible, asynchronous, available anytime) and this community has built something with a fixed heartbeat. People don’t join every time. But they know that the link and times never change whether you are in California, recovering at home in rural France, or logging on in the middle of the night from New Zealand. People are welcomed without question. When everything else feels uncertain and unsteady, the Zoom meeting is consistent in its message: We are here, we will be here, come when you are ready.
3. Real doctors show up voluntarily.
"Come ask a thoracic surgeon on our call tomorrow."
One of the most experienced esophageal surgeons in the United States from Baylor College of Medicine has voluntarily joined the Zoom call six times in the past twelve months. This surgeon is willing to sit in what the community calls "the hot seat" to answer their questions on the spot. That says a lot about the kind of trust this group has built.
4. The 500-call milestone is quietly extraordinary.
"Our 500th call is next up."
This was mentioned in a Smart Patients conversation recently, almost in passing. Let’s think about that for a moment. This Zoom call is more than a support group. It's a mainstay built entirely by patients, run entirely by patients, sustained entirely by the belief that nobody should have to figure this out alone.
5. Survivorship and grief live side by side in the Zoom call.
"I know I've probably lost at least 70 patients I grew close to by now. Each loss hurts the same. You never get used to it. You just carry on and try to help others along."
This is not only a place for medical questions. People return to the Zoom call after losing a spouse. Survivors who've long been discharged by their oncologist still show up because the connection doesn’t end. These conversations hold the full arc of the esophageal cancer experience without flinching from any of it.
6. Good people are the heartbeat of it all.
"There are some Smart Patients that held my hand back in 2020; I'm just trying to be the same for others."
This community runs on generosity. Members post the Zoom link for frightened newcomers, send private messages to the newly diagnosed, help to host calls, and bear witness to every loss. They faced the dark days and helped build a lighthouse.
Our esophageal cancer community built what they needed. They created it themselves out of shared experience, generosity, and the conviction that the person who arrives today deserves everything they wish they'd had when they were first diagnosed.
If you feel that way too, please join us.
Thank you to our partners at the Esophageal Cancer Action Network for your support!