Following the death of her husband in 2008 from stage 3 esophageal cancer, Mindy Mintz Mordecai was angry and frustrated. She believed her husband, and thousands more like him, might have never died had they been aware that reflux disease could cause cancer and understood the little-known symptoms of reflux disease.

With the support of a board of directors made up of top physicians, business leaders and families that who been impacted by the disease, Mordecai founded the Esophageal Cancer Action Network (ECAN) in 2009.

ECAN’s mission is to save lives by making Americans aware that reflux disease can cause cancer, promoting early detection, supporting medical innovation to prevent, detect, treat and cure esophageal cancer and linking patients and families to compassionate support.

“Every 36 minutes, another American will die of esophageal cancer,” said Mordecai, whose daughters were just nine and twelve when their father died. “But this is a preventable disease, and by increasing awareness and promoting early intervention, we are saving lives.”

ECAN reports that the type of esophageal cancer caused by reflux disease has increased more than 600 percent since the mid-1970s. Among American men, esophageal cancer is the fastest increasing cancer diagnosis and the eighth cause of cancer death. Only one out of five diagnosed with this disease will survive five years. That’s because most cases of esophageal cancer are diagnosed at late stages when treatment is rarely effective.

About three million Americans currently have a condition known as Barrett’s Esophagus, the precursor to esophageal cancer, ECAN explains. But more than half of those patients are not aware they have the condition because Barrett’s Esophagus, like the early stages of esophageal cancer, causes no symptoms. That’s why the organization urges those with symptoms of reflux disease — like persistent heartburn, cough, sore throat, hoarse voice or choking upon lying down – to see their doctor so they can get checked.

But most Americans don’t realize that reflux disease can cause cancer. A poll conducted in March 2017 for ECAN by Ipsos, one of the world's leading market research firms, found that 86 percent of Americans don’t know that reflux disease can cause esophageal cancer. It also found that less than half of Americans associate reflux with any symptoms besides heartburn.

“We believe it’s important for everyone to be able to recognize reflux symptoms because they are often the only timely warning patients will have that they are at risk for this deadly cancer,” said Mordecai.  Her husband frequently choked upon lying down at night but never realized he had reflux disease until a six-centimeter tumor in his esophagus kept him from swallowing.

ECAN hopes to put its message in the hands of many more Americans at risk for esophageal cancer when it files a Citizens Petition with the Food and Drug Administration in May. The petition will seek labels on over-the-counter reflux medications warning of the cancer risk posed by reflux and explaining that medication does not eliminate that risk.

The most common symptoms of esophageal cancer include trouble swallowing, weight loss and chest pain—like pressure. Other possible signs are hiccups, vomiting and bone pain. But by the time patients experience these symptoms, the cancer has usually progressed to a stage that is nearly impossible to cure. That’s why ECAN’s awareness message is so important.

If patients catch their condition early, they have a dramatically improved chance of survival. In fact, patients diagnosed with Barrett’s Esophagus, the precursor to esophageal cancer, can usually be treated with new outpatient procedures and never go on to develop cancer.

Esophageal cancer most often develops in men, and that risk increases with age, but women and younger people are at risk as well, especially if they have persistent reflux. Patients who once had heartburn that went away on its own or have a family history of esophageal cancer or Barrett’s Esophagus are also at increased risk.

 that helps patients understand their risks and prepares them to discuss the topic with their healthcare provider. The guide is free; download it online at 

Through ECAN’s efforts, April has been formally designated as Esophageal Cancer Awareness Month across the United States and is now recognized by groups, associations and companies around the world.

ECAN has even enlisted some star power to share its message. ECAN partnered with the estate of film icon Humphrey Bogart — whose life was cut short in 1957 by esophageal cancer &mdash; to launch Screenings for Screenings in 2013 at the First Annual Humphrey Bogart Film Festival in Key Largo, Florida. Every year at the Festival, before each film is screened, a movie trailer produced by ECAN featuring Bogart’s son, Stephen, encourages viewers who may be at risk to get checked for esophageal cancer. In 2015, Jeff Foxworthy starred in a short “you might be redneck if…” comical public service announcement for ECAN telling viewers that reflux disease is no laughing matter.

Over the last eight years, ECAN has sponsored and supported nearly 200 fundraising and awareness events from coast to coast, including comedy shows, galas, dance events, walks, runs, bike and motorcycle rides, golf tournaments, speaking events, even art shows.

“We are doing all we can to make awareness that reflux disease can cause cancer as well-known as the need to wear sunscreen when going outside,” said Mordecai, a former television journalist and lawyer.

ECAN is also dedicated to advocacy in support of medical research funding. ECAN successfully advocated with the National Cancer Institute to include esophageal cancer in its groundbreaking genome mapping project. The journal 

 published the important results of The Cancer Genome Atlas project in esophageal cancer in January 2017.

Currently based in Baltimore, ECAN is the only national non-profit advocacy organization dedicated to increasing awareness of the link between reflux and cancer.

Articles

After losing her husband to stage III esophageal cancer, Mindy Mordecai came together with top physicians, business leaders and families affected by the disease to found Esophageal Cancer Action Network (ECAN).

How One Woman Turned Tragedy into a Mission to Save Lives

“Yoga has a dramatic effect on improvement in reducing insomnia, nausea, aches and pains, as well as increasing the tolerability of chemotherapy,” Andrew Pecora, M.D., chief innovations officer at the John Theurer Cancer Center in Hackensack, New Jersey, said in an interview. “This is all proven.”

Although many misconstrue yoga to be a form of religion, it is a 5,000-year-old system of postures and breathing techniques that originated in India. The practice aims to increase the quality and 

 of life by uniting the physical, mental and emotional.

A pilot study conducted by researchers from Wayne State University and Barnes-Jewish College examined the outcomes of yoga for survivors of lung cancer in varying stages of the disease. They found that yoga significantly improved mood, sleep efficiency and quality of life.

And those benefits extend to patients with other cancer diagnoses, too. Linda Bailey, who has triple-negative breast cancer, signed up for a Kula for Karma yoga class when it was offered at the Triple Negative Breast Cancer Foundation.

“As a patient with triple-negative breast cancer, I felt like I was dealt an additional burden and there was no one who quite understood my situation,” said Bailey. “The class provides a support group. I don’t mean that we all sit and talk about our situations, it’s just that we are all there, in a quiet, peaceful fight to adjust to our bodies and lives."

That inner peace was something Geri Topfer, founder and president of Kula for Karma, had to learn herself. “I dealt with a lot of social anxiety at the time,” she said. Then, a friend of hers suggested she take a yoga class. “I ended up doing every training imaginable,” said Topfer.

It wasn’t long before she was teaching yoga in a traditional studio setting, but there was still something missing.

“It wasn’t resonating with me, but I didn’t quite know what I was meant to do,” she recalled. Topfer realized her true calling was to bring yoga and its benefits to children and family services. Using her business background, she forged ahead and established the nonprofit organization.

Nearly 10 years later, Kula for Karma offers therapeutic yoga and meditation for patients with cancer, caregivers, veterans, senior citizens and many more groups. The organization works specifically with the medical community to create yoga and meditation programs that complement traditional treatment approaches.

“Yoga therapy is being recognized more and more,” said Topfer. “Our doctors, from the very beginning, are writing prescriptions for patients to take [one of our] classes.”

Based in the New York metropolitan area, the organization is leading the way in the integration of therapeutic yoga, meditation and stress management into mainstream medicine and health care. Classes are taught by specially trained volunteer instructors and thanks to corporate sponsors, partners and private contributions, classes are free to all participants. In addition, Kula for Karma’s classes are modified for all body types, conditions and levels.

“We have executive, medical and business advisory boards,” explained Topfer. “We consult with everyone for the best approach for different populations.” One of her goals is to make Kula for Karma the specialists in hospital-based programs for cardiac and oncology patients.

Participants of Kula for Karma’s classes also learn portable tools for managing stress, anxiety and post-traumatic stress. “We give you the tools that you need when you aren’t with your doctor, not with your therapist, not with your nurse, not with your hospice nurse,” said Topfer.

With a focus on growth and expansion, the organization recently launched a class for firefighters dealing with post-traumatic stress disorder and are looking to create similar programs for medical professionals within hospital settings.

Topfer acknowledged that while yoga may not be the cure, Kula for Karma is there to help patients manage their journey every step of the way.

“The disease is the disease,” Topfer said. “The only power that you have is what we can do in the day-to-day to really know what it looks like to take care of ourselves.”

For those interested in programming or funding, more information can be found 

Kula for Karma, a nonprofit organization, offers yoga programs designed to aid patients with cancer as well as medical professionals, first responders and others, manage stress and improve quality of life.

REBECCA BERNASKI

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