Like so many others, Mindy Mintz Mordecai did not know that persistent gastro-esophageal reflux disease (GERD) could lead to esophageal cancer until she was personally affected by it.

So, when Mordecai’s husband died 13 years ago from the type of esophageal cancer that is caused by reflux disease, she knew it was time to act. Too many people were unaware that something as seemingly benign as heartburn could lead to a deadly cancer. She knew that if more people were aware, the cancer could be prevented or at least detected at earlier, more treatable stages. 

Mordecai is the founder, president and CEO of the Esophageal Cancer Action Network (ECAN). The Maryland-based nonprofit seeks to save lives by raising awareness about the link between reflux and cancer, promoting early detection, supporting medical research and providing patients and caregivers with reliable information and compassionate support.

The primary method for detecting esophageal cancer is through an upper endoscopy with a gastroscope. The ECAN website offers several webinars for patients about various endoscopic procedures for the detection of esophageal cancer and its precursor, Barrett’s esophagus. 

ECAN also provides webinars on endoscopic treatment of Barrett’s esophagus and GERD, as well as the latest research about how Barrett’s and esophageal cancer can run in families.  

But, like most endoscopic procedures over the last year, the number of cancer screenings has declined since the start of the pandemic. Mordecai worries many patients will not be diagnosed until they are facing later stages of the disease.

Esophageal cancer accounts for approximately 1 percent of all American cancer cases, according to the American Cancer Society, but it is responsible for 2.6 percent of the nation’s cancer deaths

In recognition of Esophageal Cancer Awareness Month, we asked Mordecai about some of the challenges of the last year and her thoughts on the future of cancer detection and treatment.

SUE:  April has been Esophageal Awareness Month since 2009. But, last year the country started to shut down in March due to the COVID-19 pandemic. How did that impact last year’s awareness efforts?

Mordecai: Last year when COVID first hit, I will be honest and say I was incredibly depressed. We had just planned this amazing outreach for Esophageal Cancer Awareness Month in April. And almost every aspect of our plans required people to be face to face. Once we realized that wasn’t going to be possible, I was horrified. I didn’t know what we were going to be able to do.

I thought about what resources we have. As a national organization, a lot of what we do is virtual. And we have tremendous relationships with some of the top medical experts in the field. So, we were fortunate enough to be able to reach out to those doctors and ask them to do webinars with us. Thankfully, they were all willing to do that.

We were gratified that we got some really wonderful responses from the audience. People were saying that they learned more from our webinars than from their doctors. We got some great comments and feedback. We also had patients reach out and ask for help. And we’ve been able to connect patients with some of the nation’s top experts. This is a really important thing we feel we can do. We want patients to get the best possible care.

SUE: Has ECAN tried anything else new in promoting awareness because of the pandemic?

Mordecai: We had to cancel all of the in-person 5K races we had planned around the nation due to COVID. So, we hosted a virtual 5K race in October and had no idea whether people would respond. We had more than 300 people sign up and we raised more than $45,000, which was pretty amazing for us. We felt energized by that. This year we decided during Esophageal Cancer Awareness Month in April, we would do the virtual 5K again. More than 400 people have signed up and we’ve already raised more than $50,000.

And, for years, we’ve wanted to do a conference, but we just felt an in-person conference was too heavy a lift for our teeny tiny organization. But now that people accept the idea of a virtual conference, we felt like, well, we can do that. So, our plans are underway for a virtual conference that we are really very proud of. The lineup that we are going to have for our September conference is really fantastic. And we will host a couple of really important events in April this year, too. One of them is focused on personalized medicine, with an emphasis on immunotherapy in esophageal cancer and helping our patients understand exactly how all that works.

SUE: How has COVID-19 impacted the patient community? Are you concerned that cases are going undiagnosed?

Mordecai: We’ve seen people not being able to go in for endoscopy for months. That’s a big concern to us. People who are afraid of COVID aren’t going in to be checked. That is a real problem. If we can catch this disease when it’s still Barrett’s [esophagus], we can treat it, and we can cure it. You don’t need to progress to cancer. But many people aren’t going in to get checked. I understand the fear — I’ve been locked in my house, and I don’t go anywhere. But this is a life-or-death situation for some people and not getting checked when you are at risk just isn’t OK.

We are also working to increase awareness around the dramatic increase in early onset esophageal adenocarcinoma in the U.S. We’ve been seeing this for several years and have been very concerned about it. We are seeing patients diagnosed at young ages and at unusually advanced stages. A 16-year-old boy diagnosed with Stage 4 esophageal cancer is heartbreaking. It shouldn’t happen.

We’re searching for a solution to this problem. We’re working with our network to find a solution. That’s why we are hosting a collaborative community meeting on this topic in April. We are bringing together researchers, families, our partners at the National Cancer Institute’s My Pediatric and Rare Tumor (MyPART) Network to map out some next steps that we hope will lead to progress in understanding why this is happening and how we can stop it.

SUE: We noticed several resources targeted for caregivers on your website. Why is helping caregivers such a large role of your organization?

Mordecai: The thing about esophageal cancer is that it affects men three times more often than women. We’ve learned that often times, men don’t go to the doctor. When my husband was diagnosed, he said, "You just tell me what I need to know to get better." That puts a lot of strain on the partner. So, we try to make sure they have the best possible information. We try to create a network and forum that helps people communicate with each other, but mostly provide resources to make sure they are well-educated because we believe that a caregiver who is well educated is going to help their loved ones make the best decisions.

SUE: Looking ahead, do you feel there may be more that the clinical community can do in the future to help with early detection and awareness?

Mordecai: There are a couple of things that concern me. One is that heartburn is ubiquitous. We see it everywhere. You cannot expect a primary care doctor to send every patient with heartburn for an endoscopy. You need to be reasonable.

But now, with minimally invasive detection devices coming to market, it is my hope that we will see many more patients being sent for that kind of screening that does not require sedation and a day off work. I’d like to see more primary care doctors understand the risks that reflux can pose.

I think the saddest phone call I ever got was from a young physician whose father was also a physician. She called me and said her father had esophageal cancer and neither of them knew that reflux disease could cause cancer. That’s very concerning.  We feel like perhaps that will change over time, but this is something we think all healthcare professionals should be aware of.

SUE: It’s been 13 years since ECAN was founded. How have you been able to keep the momentum going?

Mordecai: After I lost my husband and realized there were very few people working to raise awareness about this disease, I just shifted the focus of my life and my career. I was an attorney and broadcast journalist. Now I consider this my life’s work. There are days when it’s hard to keep going, but today I can tell you it’s exciting to be doing this work right now. There are some really important things happening that will help our patients. So, every day I wake up and it’s invigorating.

We have some minimally invasive detection devices that will be widely available soon. We have some new immunotherapies coming online. We have some exciting new research that will help patients. I keep being hopeful that one day, even in my lifetime, we will reach a day when no one will have to die from esophageal cancer.