John Mordecai, better known to his many friends as Monte, was “a healthy guy,” remembers his wife, Mindy. He was a runner. He didn’t eat sugar and kept to a low-fat diet. But for many years, he experienced unexplained choking fits that woke him up in the middle of the night.
Mindy asked him to talk to his doctor about this strange symptom, but he always said that it wasn’t a big deal, that he was fine. Neither Monte nor Mindy knew that the choking was a symptom of acid reflux, where stomach acid sloshes back through the valve supposed to contain it and into the esophagus: the long, muscular tube that carries food from the mouth to the stomach.
And neither knew that acid reflux was a risk factor for a type of deadly esophageal cancer—or that if caught early, cells in the esophagus that may become cancerous can be eliminated, saving lives.
In 2007, Monte was diagnosed with a tumor the size of a golf ball in his esophagus. Despite a year of grueling treatment, including radiation therapy, chemotherapy, surgery, and eventually new targeted drugs, his cancer spread throughout his body. He died in the spring of 2008. His daughters were only 9 and 12 years old.
Mindy was furious. “When I first discovered that my husband was going to probably die of a preventable disease, I can’t even describe the rage in my belly,” she says.
While Monte was sick, says Mindy, “my focus was on trying to find a way to save his life and take care of my kids. But after he died…how were we going to make sure this didn’t happen to other families? Someone had to.”
In the last few months of Monte’s life, their older daughter, Mara, a passionate ballet dancer, had begun organizing a fundraiser called “Dance for the Cure,” to raise money for esophageal cancer awareness in their hometown of Baltimore, Maryland. Though Monte didn’t live to see the event, it was a resounding success, raising more than twenty thousand dollars. The next year, they did it again.
“And after we did that, I thought, ‘this isn’t enough,’” remembers Mindy. “We could raise awareness in Baltimore, but it isn’t just people in Baltimore who are at risk for this horrible disease.”
“The last thing I really needed to do when I was trying to raise my two kids by myself was start a non-profit. But I grew up in a family where we were taught that if you could make a difference, that’s your job. And I thought, I have to at least try,” she says.
Mindy took out a home-equity line of credit loan and launched the Esophageal Cancer Action Network (ECAN) out of the basement of her house in 2009. In the eight years of its existence, the fledgling group— now funded by donations and in its own office space— has made large strides in increasing both the awareness of the risk of esophageal cancer and the attention the disease receives from the medical community.
Reflux and Risk
Since the 1970s, the number of cases of a type of esophageal cancer called adenocarcinoma began rising rapidly in the United States.1 A major risk factor for esophageal adenocarcinoma is acid reflux.2 The cancer has a horrendous survival rate: only about 20 percent of patients will be alive 5 years after diagnosis.3
Many people experience acid reflux as heartburn, a burning pain in the chest. Others with reflux never experience heartburn, but have other symptoms such as a persistent sore throat, a consistently hoarse voice, a regular cough, or, like Monte, choking when lying down at night, explains Mindy.
Either way, over time, reflux can lead to a condition called Barrett’s esophagus, where cells lining the esophagus die and are replaced with a type of cell that normally lines the intestines. People with Barrett’s have a greatly increased risk of developing esophageal cancer.4
A false sense of security can accompany Barrett’s because the pain that may accompany reflux often goes away. This happens because the new cells are less sensitive than the esophageal cells they replaced. When the pain disappears, patients often think
that their reflux has stopped, but it hasn’t, and neither has the damage to the esophagus, explains John Lipham, MD, associate professor of surgery at the University of Southern California and ECAN’s current board chair.
And treating the reflux with medications once Barrett’s has developed doesn’t seem to reduce the risk of progression to cancer. “There will always be a risk of cancer: Barrett’s in and of itself is a precancerous condition,” explains Bruce Greenwald, MD, professor of medicine at the University of Maryland, and ECAN’s past chair and current board member.
In addition to the false sense of security that arises in those cases when Barrett’s develops and the pain of reflux disappears, another reason that many people never tell a doctor about their reflux symptoms is that many powerful anti-reflux drugs are now available over the counter, explains Dr. Lipham. “People are self-medicating, and if their symptoms are gone, they believe their reflux is gone, and they don’t actually go to a doctor about the issue until they have a big tumor in their esophagus,” he warns. “If you have heartburn more than two or three times a week, or heartburn severe enough that you need to be on drugs like Prilosec OTC or Nexium 24HR, you need to bring that to the attention of your healthcare provider, because you may need to be checked for Barrett’s,” adds Dr. Greenwald. “And don’t think that because you have no more heartburn [while taking medication] that the risk is not there.”
Though treating reflux can’t prevent Barrett’s from progressing to cancer, the good news is that Barrett’s with precancerous changes (called dysplasia) can be eliminated, reducing cancer risk. A procedure called ablation can remove the precancerous cells in the esophagus, “We have excellent scientific studies to show that we prevent cancer by eradicating Barrett’s esophagus with dysplasia. That’s been a major breakthrough in the last 5 or 10 years,” says Dr. Greenwald.
Currently, existing guidelines don’t clearly define which people with reflux should be screened for Barrett’s esophagus, because only a small minority will ever develop the condition. The available screening technique, called endoscopy, requires patients to go under anesthesia and is relatively costly, limiting its wide use.
Some newer technologies under development may help bring esophageal cancer screening to a larger population, explains Dr. Lipham. These include a small sponge called the Cytosponge that can be swallowed and pulled back out to collect esophageal cells, some easy-to-use imaging technologies, and a breath test. Importantly, these tests could be used in a primary care doctor’s office, eliminating the need to see a specialist just for screening.
Having a cheap, universal screening test could also get around the problem that 40 percent of people with reflux never experience any symptoms. But it will likely be years before any new technique becomes widely used, says Dr. Greenwald. In the meantime, people will need to talk with their doctors and make individual decisions about whether or not to undergo endoscopy to look for Barrett’s based on their personal risk factors, he adds.
Raising Awareness and Advocating for Research
In its relatively short life, ECAN has done much to get esophageal cancer on the national radar
and to advocate for increased research funding for what has been a neglected disease. In their early days, the group launched the designation of April as Esophageal Cancer Awareness Month in states across the nation. Today, it is observed by governments, businesses, and organizations across the country and around the world.
ECAN also pushed for esophageal cancer to be included in the National Cancer Institute’s (NCI’s) project known as The Cancer Genome Atlas (TCGA). That nationwide research project aimed to identify common genetic
mutations among specific cancer types, which could be future targets for treatment or markers of risk. Results from the esophageal cancer research project, published this January, shed new light on the cellular changes driving the disease. 5 “I feel like, if we accomplish nothing else as an organization, that was important,” says Mindy.
But they’re not stopping there. ECAN is currently advocating for esophageal cancer to be included in NCI’s new Cancer Moonshot initiative, which is allocating almost two billion dollars for research to accelerate new cancer treatments. They’re petitioning the Food and Drug Administration to change the labels of over-the-counter acid reflux medications to include a warning that reflux can cause cancer and that the drugs do not reduce that risk.
And they continue to get information about esophageal cancer awareness in front of people who have likely never heard of the disease or considered their risk: in the news media,6 on film—in partnership with the estate of Humphrey Bogart (see Box)—with comedians across the country who participated in their “No Laughing Matter” night, at sporting events, and more.
Thanks to a generous private donation, ECAN is now hiring a second full-time staffer and holding a fundraiser to take their activities to the next level. This year, ECAN commissioned a national survey that found that only 14 percent of Americans know that reflux can cause cancer. “I’d like to use that as a baseline, and then do it every year, and see if we’re moving the needle,” she explains.
She likens it to recent skin cancer prevention efforts. “We all know about the sunscreen story now, but there was a day that we didn’t,” says Mindy. But to put things in perspective, she explains, esophageal cancer kills about 6,000 more Americans than melanoma—the deadliest skin cancer— every year.3,7 “We can [raise awareness] about reflux as well, and I think we have to,” she says.
Although women do have a lower risk of esophageal cancer than men, “if you’re someone who has reflux, or if you have some of these other symptoms, or if you have other people in your family with Barrett’s or esophageal cancer, get checked, even if you’re a woman,” urges Mindy.
“Also, we’re wives, partners, mothers, sisters—we can make a difference in the lives of the men we know, and when we see someone who’s popping the Tums or the Prilosec, or has those other symptoms, encourage them to be checked. And when they brush it off like it doesn’t matter, we can point out that it does. It doesn’t take that much, and it can save their life,” she concludes.
Two examples of ECAN videos can be found online:
- Brown LM, Devesa SS, Chow WH. Incidence of adenocarcinoma of the esophagus among white Americans by sex, stage, and age. Journal of the National Cancer Institute. 2008;100(16):1184-118.
- Lagergren J, Bergström R, Lindgren A, Nyrén O. Symptomatic gastroesophageal reflux as a risk factor for esophageal adenocarcinoma. New England Journal of Medicine. 1999 340(11):825-31.
- The American Cancer Society: What Are the Key Statistics About Cancer of the Esophagus? Available at: https://www.cancer.org/cancer/esophagus-cancer/about/key-statistics.html. Accessed March 29, 2017.
- Sharma P, Katzka DA, Gupta N, et al. Quality indicators for the management of Barrett’s esophagus, dysplasia, and esophageal adenocarcinoma: international consensus recommendations from the American Gastroenterological Association Symposium. Gastroenterology. 2015 Nov;149(6):1599-1606.
- Cancer Genome Atlas Research Network. Integrated genomic characterization of oesophageal carcinoma. Nature. 2017541(7636):169-175.
- Mordecai M. “Obama’s sore throat could be a lifesaver.” The Detroit News. December 11, 2014. Available at: http://www.detroitnews.com/story/opinion/2014/12/11/obama-sore-throatlife-saver/20234759/. Accessed March 29, 2017.
- The American Cancer Society: Key Statistics for Melanoma Skin Cancer? Available at: https://www.cancer.org/cancer/melanoma-skin-cancer/about/key-statistics.html. Accessed March 29,2017.