At 23 years old and just one year out of college, Glorianna (Glory) Gensch’s dreams for her life should have been just beginning. But she’d been diagnosed with advanced colon cancer the year before and now, by the early summer of 2007, she was fighting for her life. Glory knew the disease was uncommon in people her age. As she reached what would be the final weeks of her life, she chased the answer to a question that was at the top of her mind: Couldn’t there be a better way to detect colon cancer earlier, when it can be treated most effectively, in people of any age?
Her face illuminated by the glow of a laptop screen, the Colorado native discovered someone else pursuing answers to the same question: Dr. William Grady of Fred Hutchinson Cancer Research Center in Seattle. While Glory didn’t live long enough to meet the early-detection scientist and colon cancer specialist, her Internet search was the beginning of a years-long relationship between her family and the researcher.
Glory’s mother, Cindy, now of Wichita, Kansas, describes her only daughter as a friend to everyone, a “herd person” who always enjoyed being surrounded by other people. She was everyone’s best friend, the one they would call when they needed advice, Cindy said.
By the time her senior year began at the University of Arizona in the fall of 2005, Glory looked forward to her last semesters alongside her college friends and to finishing her degree in family studies. Before settling on a career plan — she was considering counseling — Glory hoped to travel the world after graduation and, hopefully, to stumble across a handsome young man who shared her Christian faith and dream to start a family.
But that year on the threshold to her future was when things started to go wrong for Glory, Cindy recalls, from bowel troubles to severe weight loss and vomiting that worsened as time went by. Ten months of monthly visits to her general practitioner yielded nothing more than a diagnosis of stress from the busy life of a student.
She would feel better after she graduated, he told her. Instead, Glory spent the 24 hours before her graduation vomiting uncontrollably, her mom said.
What Glory and her family didn’t realize was that her symptoms were the result of stage 4 colon cancer. It was finally diagnosed that summer, after Glory was rushed to the emergency room with internal bleeding that caused massive swelling in her lower limbs and critically low blood pressure. By then, the cancer had spread to her liver and ovaries.
“Cancer changed our world,” Cindy said. “In one minute going from hopes and dreams and planning for her future and excited for her, to being a warrior and fighting for life.”
While Glory was doing the research online that led her to Grady, her oldest brother, Jeromy Gensch, now of Houston, formed a foundation in her honor to promote the importance of colon cancer early detection, knowledge of cancer signs and symptoms, and personal awareness of family history of cancer. (Glory had five close relatives who also developed cancer, many at a young age.)
At first Glory was hesitant about being the face of a fundraising organization — she didn’t like to talk in front of people, Cindy said — but she realized that not only was her brother determined to start the nonprofit whether she liked it or not, it was an opportunity to help find a solution to the early-detection problem she had identified in her disease.
“After much thought, Glory asked him [Jeromy] to do whatever he could to help save lives,” Cindy said. “And then she went on to say that if even one life could be saved, it would be worth all the effort.”
Without ever speaking to anyone at Fred Hutch, Glory insisted that the nascent foundation, RACE Charities, use the funds to support the research of the scientist she had found online. (RACE stands for “Raising Awareness of Cancer Early on”.)
“It’s just one of those ‘meant to be’ moments, where she just knew,” Jeromy said. “She made it very clear to me that [Fred Hutch] was the center of her choice.”
Not long afterward, Glory passed away on July 5, 2007. Her life was celebrated by 450 friends and family who shared a tiered cake, made by Cindy, that Glory had dreamed of for her own wedding, some day in the future.
Shortly after the death of his sister, Jeromy reached out to Grady for the first time. Jeromy felt “immediate synergy” with the Seattle scientist, he said.
“It was one of those things where we both just immediately knew that we were on to something,” a partnership toward a shared goal, Jeromy said.
"Glory and the Gensches are a touchstone for the research scientists in the lab and for me," said Grady, whose office features a small box of mementos — an inspiring note from Glory’s mom, a wristband that Glory and her best friend designed for RACE Charities — symbols that remind him of the human toll of this cancer. "She reminds us of the importance of the studies we are doing and inspires us to find a way to prevent colorectal cancer.”
A gastroenterologist and molecular biologist, Grady is focused on finding molecular markers, called biomarkers, that could lead to the development of widely available, noninvasive methods to detect colon cancer early, when it is most treatable, or even identify colon tissue at risk of developing cancer later in life. These methods would be used to tailor cancer prevention tests and therapies to those people who need them the most.
The idea is to develop a routine stool-based test that can detect biomarkers indicating the presence of a silent cancer or precancerous growths known as polyps. Similar biomarker-based tests could identify people whose colon tissue is most likely to develop polyps or cancer in the future. Patients identified by these tests could then be referred to receive follow-up care, such as colonoscopy or cancer-preventing drugs, that would otherwise not be medically indicated, Grady said.
The tests that Grady envisions would supplement a type of high-accuracy colon cancer screening that has been around for decades: colonoscopy. In this procedure, a long, hollow, lighted tube is inserted into the colon to check for cancer or polyps. The instrument can also snap pictures, take small tissue samples for analysis or snip off polyps or other abnormal growths.
Thanks to increasing use of colonoscopy, the rate of colon cancer in the U.S. has been declining in recent decades, according to the American Cancer Society.
But colonoscopy is not a universal solution, and one of the reasons for this has to do with age. According to the ACS, colon cancer is 15 times more common in adults age 50 and older than it is younger adults. For most patients, doctors recommend beginning routine colonoscopies starting at age 50, when the average benefits of the procedure — the likelihood it will find polyps or cancer — outweigh the risks, such as the small (1 in 3,000) but serious risk of the instrument damaging the walls of the bowel.
Because of the procedure’s unfavorable balance of risks and benefits in people under 50, doctors tend to be hesitant in referring a young patient with gastrointestinal symptoms — someone like Glory before she was diagnosed — for a colonoscopy.
“Right now the problem is that colon cancer is unusual in young people, so when you are young and have abdominal pain or some occult blood in your stool, on average the risks of having a colonoscopy are greater than the potential benefits from it. So the medical community weighs the risks and benefits and says, ‘the benefits just aren’t there,’” Grady said.
“If we could come up with tests that are safer than the ones we’ve got and that are accurate, then that would be something that would really change the way we take care of young people and prevent colon cancer in people under 50 without subjecting them to too much risk,” he said.
In particular, Grady looks for genes marked by particular patterns of chemical modifications of the DNA that change how the cellular machinery reads the gene’s instructions; these modifications are called epigenetic changes. Epigenetic changes appear to be key drivers in the development of colon cancer and other tumors. Some of these epigenetically marked genes are shed by colon tissue and find their way into the stool, where they might be detected by tests.
He and his collaborators are identifying epigenetic biomarkers of cancer as well as epigenetic biomarkers of tissue at greater risk of developing into cancer. Thanks in large part to grant support from the National Cancer Institute’s Early Detection Research Network, Grady’s team is already in the process of identifying and validating several sets of biomarkers, a necessary step in their potential development into standard-of-care, clinical tests.
For the Gensch family, the progress that Grady is making on biomarker-based screening for colon cancer brings up a mix of painful reflection and hope.
“What if? What if biomarker technology would have been available when she was going through what she was going through?” Jeromy said. “What if that type of a protocol became mainstream? What if the percentage chance of having colon cancer could be detected with something as inexpensive and nonintrusive as a stool sample or a urine test?
“Those are big ‘what ifs,’” he said.
When Glory was healthy, she loved to run. After she became sick, running turned into a way for her friends and family to honor her spirit and raise money to fulfill her dream to help save lives.
In the days before her death, Jeromy flew to Wisconsin on three days’ notice to run a half-marathon in Glory’s honor, the first time he’d run since high school. He promised Glory he would finish the race without stopping, and, despite the pain and exhaustion, he did, wearing a warrior-themed RACE Charities T-shirt. He flew back the same day and hobbled to her bedside at the hospital.
A few months after Glory’s death, her father, John, looked down at the RACE Charities wristband he was wearing. Then, Cindy recalls, he suddenly stood up from the kitchen table and said he’d be back. He came back out of breath after running to the end of the block and back.
“The inspiration for everyone that we know, and everyone that runs with us, is Glory,” Cindy said. “The pain that they feel when they’re running is nothing compared to the pain that she was experiencing. She’s their inspiration.”
Now, they all run. Glory’s other brother, Ben, became an Ironman. John now runs half-marathons with extended family. Glory’s sorority sisters and friends run for her. Grady has even travelled to Kansas to run, too. Through their runs and other activities, RACE Charities has promoted early detection and the importance of being an active, assertive patient, Cindy and Jeromy said.
By raising money through these events and other fundraising efforts, the foundation has also helped Grady purchase critical research equipment for biomarker detection that he says would be nearly impossible to fund through conventional grants.
However, Grady said, the family’s passion is at least as important for his research as their financial support.
The Gensches are “reinvigorating” his whole team, Grady said. “They’ve met all the people in the lab. That’s really been important for the people in the lab, because it makes them understand why we’re doing the research, the importance of it, and the impact it can have.”
What would Glory have thought if she could have come herself to the Grady Lab, and learned about the work that her dream was helping to make possible?
“We know she would have been excited. She got it,” Jeromy said. “Even reading about early detection research online, she understood the impact it could have in saving lives. And now, years later, we see the hope of Glory unfold.”
For more information about Glory, RACE Charities and the organization's work with Fred Hutch, visit www.racecharities.org.
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Susan Keown is a staff writer at Fred Hutchinson Cancer Research Center. Before joining Fred Hutch in 2014, Susan wrote about health and research topics for a variety of research institutions, including the National Institutes of Health and the Centers for Disease Control and Prevention. Reach her at email@example.com or follow her on Twitter at @sejkeown.
Solid tumors, such as those of the colon, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.