When heartburn leads to heartache

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Carol Sorgen
Mindy Mintz Mordecai gave up her career as a reporter and talk show host to establish and run the Esophageal Cancer Action Network following the death of her husband from the disease. The nonprofit organization raises awareness of esophageal cancer, particularly its link with heartburn.
Photo by Frank Klein

Mindy Mintz Mordecai is a familiar face to many from her years serving as a reporter and program host on Maryland Public Television, WBAL channel 11, and WYPR-FM, where she was named Baltimore’s Best Radio Talk Show Host by the Baltimore City Paper.

As recently as five years ago, Mordecai had a successful career as both a broadcast reporter and attorney. She was also happily married to her husband John (known to all as Monte), and mother to daughters Mara and Maya.

But then the family’s life took a tragic turn when John was diagnosed with advanced esophageal cancer. He died just a year later, leaving Mordecai trying to understand how this could have happened.

 “From being a reporter, I thought I was pretty aware of health issues,” said the 53-year-old Pikesville resident. “But I was flabbergasted when I found out that esophageal cancer can be caused by reflux disease [heartburn].”

Sobering statistics

While her husband was ill, Mordecai spent countless hours online looking for treatments that could save his life. She thought there would be many organizations to which she could turn.

What she found, however, was that public — and even medical — awareness of esophageal cancer was alarmingly low, even though it’s one of the fastest increasing cancer diagnoses in the U.S.

Every day, an estimated 25 million American adults suffer from Gastrointestinal Reflux Disease (GERD) or heartburn. The condition occurs when food and stomach acid back up into the esophagus, irritating its sensitive lining. Some experts believe that 40 percent of adults experience heartburn every month.

Some people with GERD will develop a condition called Barrett’s esophagus. Patients with Barrett’s esophagus have a 30- to 125-fold increased risk of developing esophageal cancer. Persistent backup of acid from the stomach alters the normal cells lining the esophagus, causing a change in the DNA that can allow cancer cells to take over.

The incidence of esophageal cancer due to any cause increases with age. About 8 out of 10 people diagnosed are between the ages of 55 and 85. (Mordecai’s husband was 63 when he died.)

Despite these statistics, said Mordecai, few people understand that heartburn can cause cancer. And currently, only one in five patients diagnosed with esophageal cancer will survive five years, largely because the disease is usually detected at late stages.

But if esophageal cancer is caught in pre-cancerous or early cancer stages, patients have a good chance for survival.

Filling an information void

Angry and frustrated that something as common as heartburn had caused her husband’s cancer, and determined that no other family should suffer a loss because of this devastating disease, three years ago Mordecai founded the national Esophageal Cancer Action Network (ECAN).

Mordecai and the ECAN board of directors, comprised of physicians and business leaders, are working to increase awareness about the link between heartburn and cancer, and support increased funding of research for esophageal cancer treatment, detection and prevention.

“So many people believe heartburn is benign,” said Mordecai, noting that doc tors will often prescribe a heartburn medication, or more likely, heartburn sufferers will just reach for an over-the-counter drug and self-medicate. “Because the disease is not getting a lot of attention, not a lot of research is being done.”

Mordecai is working to change that. She has successfully advocated with the National Cancer Institute to include esophageal cancer in its groundbreaking genome mapping project known as the Cancer Genome Atlas (TCGA).

“Tears were running down my face when NCI called to tell me this,” said Mordecai. “Even if we never accomplish anything else, we’ve done something that really matters…that can save so many lives in the future.”

New guide about risk

But Mordecai is not content for that to be ECAN’s only success. Since its inception, the organization has made other significant strides in the fight against esophageal cancer, including a just-released guide for patients providing comprehensive and clear information about the link between GERD and cancer.

According to Mordecai, the guide is designed to help patients advocate for their own healthcare and is available as a free download from the ECAN website (www.ecan.org).

“People don’t realize how dangerous heartburn can be, and making the symptoms go away won’t prevent you from developing cancer,” said Mordecai. “We want people to understand the risks and get screened, so it can be caught early enough to save their lives.”

“Because there are currently no clear guidelines about who should be screened for esophageal cancer or Barrett’s esophagus, this is valuable information patients can use to be advocates for their own healthcare,” said ECAN board chair Dr. Bruce Greenwald, professor of medicine and a gastroenterologist at the University of Maryland Greenebaum Cancer Center.

Mordecai has also formed a partnership with the estate of film icon Humphrey Bogart, who died from esophageal cancer. Bogart’s son, Stephen, will be coming to Baltimore at the end of October to shoot several public service announcements to help ECAN raise public awareness.

Thanks to Mordecai’s efforts, April has also been designated as Esophageal Cancer Awareness Month in states across the nation.

ECAN sponsors an annual fundraiser, called the Cancer Dancer, first inspired by Mordecai’s older daughter, Mara, now 17 and a dance student at the George Washington Carver Center for Arts and Technology in Towson. (Younger daughter, Maya, 14, attends Pikesville Senior High.)

This past April, ECAN also hosted the first gala ever held in the U.S. to focus on esophageal cancer advocacy. Former congresswoman and undersecretary of state Ellen Tauscher, an esophageal cancer survivor, spoke to a gathering of nearly 300 guests. Tauscher has agreed to be the honorary chair of ECAN’s 2013 Cancer Dancer and is working with ECAN leadership to advance the organization’s mission.

Mordecai also praises the efforts of the many volunteers and families across the country who are working to raise public awareness and benefit ECAN.

Mordecai’s former career has given way to her full-time efforts for ECAN, based in Pikesville. The small organization was only recently able to hire two part-time staff members and two part-time consultants. “We’re still small, but we’re making things happen.

“Like my daughters, a lot of young people are losing their fathers especially,” said Mordecai. That’s because esophageal cancer targets men three times as often as women.

“I just want to keep other families from suffering the same tragedy that we did.”

For more information about ECAN and its mission, go to www.ECAN.org.

Symptoms to watch for ECAN’s new esophageal cancer guide suggests patients should talk to their doctor if:

  • They have more than occasional heartburn symptoms
  • They have experienced heartburn in the past, but the symptoms have gone away
  • They have any pain or difficulty swallowing
  • They have a family history of Barrett’s Esophagus or esophageal cancer
  • They have an ongoing, unexplained cough
  • They have been speaking with a hoarse voice over several weeks
  • They have a long-lasting, unexplained sore throat
  • They cough or choke when they lie down