Hereditary Colon Cancer Foundation is saving lives from Park City
July 10, 2015
Travis Bray remembers sitting in the window-walled room on the top floor of the Huntsman Cancer Institute, peering out over the Salt Lake Valley. Seldom had a view looked so beautiful. A lump formed in his throat. His eyes reddened. He tried his best to restrain his emotions.
He had just unexpectedly received the kind of news for which hundreds of people who visit the institute yearn. In a single moment, the doctor’s words had transformed his life. A cascade of thoughts flooded his mind. He had to call his mother. What would her voice sound like when he told her? For the first time, he wondered whether his choice not to have children was a mistake.
"All I could so was just stare out of the window," he said.
Bray’s grandfather had died of hereditary colon cancer at 36. His father died of the disease at 54. If untreated, the disease kills nearly everyone it afflicts. Bray, who was 35, had always thought he would die in his 50s, too. But what the doctor said bewildered him: He treats patients who live well into their 70s or 80s. And with the preventative care Bray had received throughout his life, he was also likely to live that long.
"All of a sudden, someone just gave me 25 years in a little box with a ribbon on it," he said. "Twenty-five years. I couldn’t speak. I was stunned. It was like the air had been sucked out of the room."
Bray had come to Salt Lake City two years ago to convince the doctor, Randall Burt, a "rock star" of the hereditary colon cancer community, to join the board of directors for the foundation he and his wife, Shawnie, had founded a year before. Recruiting someone with Burt’s background and knowledge would be a crucial triumph.
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But Bray couldn’t summon the strength to speak. He sat, slack-jawed and speechless, looking out over the valley. His wife tapped his leg under the table, urging him to say something. Instead, he remained silent for what seemed like minutes.
"That’s a long time when it’s just three people in a room," he said. "It was the literal definition of having your world changed."
A deadly disease
Bray, now 37, and his wife had founded the Hereditary Colon Cancer Foundation in Chicago a year before their visit to Salt Lake City. He had lived a healthy, active life after having his colon removed at 15 in a preventative procedure, but in his young 30s, he started experiencing symptoms of a common condition among those with hereditary colon cancer called familial adenomatous polyposis.
He had become accustomed to the belief his life would be abnormally short, but the symptoms and invasive tests he underwent shook him out of a state of passivity. He quit his job as a chemist working with plutonium at the Argonne National Laboratory and dedicated himself to helping others who also had hereditary colon cancer.
"It’s kind of the idea that if you have the ability to do something, you also have the obligation to do something," he said. "It was too hard for me to just, like, recess back into my career and ignore it and brush it off.
"It slapped me in the face, how it was affecting other people and the gross gap in care that was available for patients with hereditary colon cancer. If you have colon cancer, there are a lot of resources out there, but if you have a hereditary form, there are other chronic issues that you have to deal with."
The foundation began with a simple mission: inspire and give hope to others battling the disease. The Brays envisioned serving as a resource for people with hereditary colon cancer, doling out information about the disease and helping them find the best available treatment.
Providing that for people was important because without treatment, the disease can mean certain death.
Many with hereditary colon cancer suffer from Lynch Syndrome, which increases the risk of cancer attacking other parts of the body, including the endometrium, ovary and stomach. Others, like Bray, are diagnosed with familial adenomatous polyposis. That condition causes cancerous polyps to develop in the colon, and can also lead to thyroid and small intestinal cancer.
The prognosis for those diagnosed with the condition is often bleak.
"It would be like shag carpeting through the entire length of the colon," Bray said of familial adenomatous polyposis. "And every polyp has a 100-percent chance of becoming cancerous at some point. It’s just a matter of when. The average onset of cancer without a colectomy is 36. The average age of mortality is 40."
But if caught early enough, and with proper treatment, neither Lynch Syndrome nor familial adenomatous polyposis are necessarily death sentences. That’s why, as crucial as providing knowledge for those who have hereditary colon cancer was for the foundation, spreading awareness about the disease, and the benefits of being screened for it, was equally important.
"We can take a 100-percent chance of cancer and 100-percent chance of death due to colon cancer to a 0-percent chance of colon cancer and a very long life," Bray said. "I was on the hill 60 days this winter as a part-time ski instructor. I want them to see that, if you get the care, you can live a totally normal life."
It was clear to the Brays there were plenty of people the foundation could help. But finding a foothold in Chicago was proving difficult.
Success in a ski town
Three years after starting the foundation, Bray and his wife, Shawnie, have seen both the money they have raised and their influence grow. But it has only happened, they say, because of that visit to Salt Lake City, which proved critical for reasons other than recruiting doctors from the Huntsman Cancer Institute.
Shortly after the visit, they moved the foundation to Park City. They wanted to be closer to the cancer institute, but they also yearned to live in an environment more similar to the outdoor lifestyle of Berkeley, Calif., where they had met and fallen in love.
"The universe was pointing us to Park City," Bray said. "We felt like we would no longer be this faceless organization, trying to get started in the underbelly of Chicago. We would be in a town that nurtures and grows non-profits, and right next to the flagship for the study and treatment of hereditary colon cancer. It was just too much to pass up."
What they’ve found here has blown past their expectations. At every turn, there has been another organization or non-profit eager to help the foundation flourish — and it has. The foundation served 10,000 patients last year and educated more than 500 doctors about the disease and the best practices for treatment, Shawnie Bray said. Contacts the organization has made have almost doubled. Donations have grown by 400 percent.
The Brays have felt overwhelmed.
"There are so many people saying, ‘Here, let me help you succeed,’" Shawnie Bray said. "It doesn’t feel competitive, even though we have everybody vying for the money of people who are philanthropists. There’s no way we’d be where we are today as a foundation if we had not come here."
The numbers are important. But Bray said the stories of the people the foundation serves best illustrate its purpose. He shared the story of one patient the foundation has recently helped.
The woman had been diagnosed with a tumor that stretched the length of her body, from her leg to her shoulder. Doctors gave her six months to live. A 24-year-old single mother without health insurance, she was forced to decide who would get custody of her two young children when she died.
But then the foundation found her online, through a post she had written describing her plight.The foundation reached out, and Shawnie Bray worked with Vanderbilt University Medical Center to have her screening and treatment paid through their charity care program for the next six months.. Her prognosis, though still uncertain, is more hopeful.
"Now we have her at one of the best clinics at the country, and 100 percent of her care is being covered," Shawnie Bray said. "She is being treated. And she actually got engaged since then and is planning for her future, rather than planning for the end."
The woman is far from the only person to find hope through the foundation.
Danielle Brannan, who lives in Alabama, first showed symptoms of familial adenomatous polyposis when she was 3. She began seeking treatment in her teens, but a slew of doctors misdiagnosed her. They said she had hemorrhoids.
the time she was 31, thousands of bleeding polyps were growing in her colon and turning cancerous. She had a colectomy, but still faced a horde of medical issues. Desperate, she began searching for help.
She soon discovered the foundation, and the Brays helped her find treatment at the Vanderbilt University Medical Center. Her doctors there soon discovered a tumor in her small intestine. She has been on chemotherapy for the past three years and recently found out the tumor has shrunk for the first time. Her doctors may lower the dosage for her next round of chemotherapy.
She feels fortunate.
"Without [the foundation] and what they do, I would not be in the place I am today with my health," Brannan said.
Brannan has another reason to be grateful, as well. Her son also has hereditary colon cancer and first developed a tumor at six months old. But she is hopeful that, in part due to the foundation’s network of contacts that finds treatment for patients, her son, who is now 5, and others like him don’t have to live with the uncertainty she suffered through for 16 years.
After searching for nearly half her life, Brannan at last has found comfort following so many years of "torment and wondering what is wrong with me."
"It’s like we don’t have to really worry about where to go, who to turn to," she said. "Everything is already there. A simple phone call is all it takes. It’s not walking in the dark without any ray of light. I don’t have to do that anymore."
The foundation has prevented others from getting their stomachs or ovaries removed based on advice from doctors not trained to treat hereditary colon cancer, Bray said. Thousands more have benefited from the foundation’s network of resources.
The Brays, however, are focused only on one patient: the next one.
"I don’t know how many lives we’ve saved or how many people we’ve prevented from getting cancer," Shawnie Bray said. "I don’t think we’ll ever know. But in the moment, when you have the conversation with somebody and you encourage them to get certain care, and they come back to you and tell you they did get good care, it feels like a relief. I guess that’s the best way to put it. Every time we help, it feels like a relief."
A ‘catalyst for change’
Through the foundation’s work, Travis Bray has made peace with his disease. The days of readying for death in his 50s are over, and he now hopes to eventually become the oldest person in his family — his aunt Debra currently holds the title at 56. He’s begun preparing for a long life with Shawnie and for retirement, something he’d never bothered with before.
But what hasn’t changed is living his life with a sense of urgency. He said that if there’s good that can come out expecting an early death, it’s that. His outlook on life is a big part of what made marrying him worth it for Shawnie, despite believing they’d only spend about 20 years together.
"It’s always been an impetus for me to find the most out of life," Travis Bray said. "I call it my catalyst for change. I wake up every day and ask if I’m happy. If the answer is ‘no’ for too long, something’s got to change. And now, even though I think I’m going to live to my 70s, I still have that mindset. Every day should be enjoyable."
The foundation will be celebrating its three-year anniversary with a party July 16. It will be held from 5 p.m. to 7 p.m. at Red Rock Brewery. All are welcome, but should RSVP to shawniebray@HCCTakesGuts.org . For more information about the foundation, visit hcctakesguts.org.
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