In September 2018, 56-year-old Leslie Ferris Yerger took her first steps on the 500-mile hike on the Camino Frances along Spain’s famous Camino de Santiago. That first day, she felt nervous, but determined as she faced a steep climb through the Pyrenees Mountains.
She had also set some steep goals for what turned out to be two life-changing journeys. Almost a year earlier, the busy Hawthorn Woods mom had been blindsided by a diagnosis of Stage 4 breast cancer. Now, she was committed to achieving her dream to make the long pilgrimage across Northern Spain alone. Her second goal was to raise $100,000 for research to support an innovative new breast cancer screening technology that could save lives for other women with dense breasts.
Forty days later, Yerger not only reached her fundraising goal, but her passionate advocacy set in motion a chain of events that this fall will put Barrington on the cutting edge of personalized breast cancer screening.
Thanks to Yerger, the generosity of local philanthropist Vince Foglia, and others, the Advocate Good Shepherd Breast Care Center will offer Molecular Breast Imaging (MBI), a new screening tool that finds three times as many cancers as mammograms in women with dense breasts.
And by the end of her long trek, Yerger had found a new calling. She would speak out to push the medical establishment to look beyond annual mammograms for women with dense breasts and adopt supplemental technologies that can detect more cancers earlier. “I want to be a disrupter of the status quo on breast cancer screening,” she said.
Almost a year earlier, Yerger was stunned to learn that despite having a clear mammogram report just two months before—a routine bone density scan had uncovered what eventually proved to be metastatic (stage 4) lobular breast cancer. Her dense breast tissue had made her tumor invisible on a mammogram. The cancer in her breast was the size of an egg, and it had spread to her bones.
Bewildered as to how such extensive cancer had escaped detection, Yerger set out to learn as much as she could. She found that although regular screening mammograms are proven to save lives, they are unable to catch over half of all tumors in breasts that are classified as “dense”. Approximately half of all women screened have dense breasts—and because early detection and treatment is strongly linked to survival—those missed tumors can have serious consequences.
“For women with dense breasts, mammograms alone are not enough,” according to Dr. Barry Rosen, medical director of the Advocate Good Shepherd Breast Care Center. Rosen is a strong proponent of personalized screening, a strategy that assesses factors such as breast density, family history, genetics, and others that affect a woman’s breast cancer risk to recommend supplemental screening as needed.
“Breast density can only be determined by mammogram, not by look or feel,” Rosen explained. Breasts are classified as dense when a radiologist evaluating a mammogram concludes they have more glandular and fibrous tissue than fatty tissue.
In mammogram images, fatty tissue is dark and transparent, and there’s good contrast with tumors, which appear white. But dense breast tissue also appears white on a mammogram, making tumors difficult or impossible to see. It can be “like shining a flashlight through a rock,” Rosen said.
When Yerger learned about MBI, she wondered why she’d never heard of this technology developed specifically to find hidden tumors in dense breasts. Then, during treatment at Mayo Clinic in Rochester, Minnesota, she had a chance meeting with Dr. Deborah Rhodes, one of the contributors to the development of MBI technology (and Associate Chief Medical Officer at Yale and Yale New Haven Hospital).
“Her story is the reason I have been doing this work for 20 years,” Rhodes said. “When you meet women who have just had a normal mammogram, and then find out they have advanced breast cancer—that should never happen. That is a failure of mammography.”
Rhodes and her partners were conducting a clinical trial named Density MATTERS. This large study sets out to prove their initial findings that MBI detects 300% more tumors hidden in dense breast tissue than 3D mammograms. “It’s not the radiologist’s fault. It’s that the cancer is truly not visible on the mammogram,” Rhodes explained.
MBI is FDA-approved, safe, cost effective, and has a radiation exposure equivalent to 3D mammograms. However, Rhodes said the medical establishment has been slow to adopt it, because although it clearly finds more cancers, there are no studies to prove that it reduces deaths. “Mammography is very entrenched: Everybody has it, it’s very familiar and there are decades of research behind it showing it reduces the death rate from cancer,” Rhodes explained. “It’s very difficult for any other imaging test to compete with that, because it takes years of study to demonstrate.” The Density MATTERS study will provide the data she hopes will one day make MBI widely accepted and available to all women who need it.
Yerger realized that MBI could help many other women avoid a diagnosis like hers. “I thought, ‘This technology may have helped find my cancer earlier. This is what we all need. Why don’t more women know about this?’” she asked. The Density MATTERS study needed funding to continue, so Yerger decided to dedicate her Camino hike to raising money.
With no fundraising experience, she was unsure where to begin. Then community activist Bob Lee of Barrington introduced her to philanthropist Vince Foglia. Foglia was deeply impressed by Yerger—and by MBI technology. “Leslie was outstanding,” he recalled. Foglia already had an interest in the issue. His longtime assistant is a breast cancer survivor, and he had recently heard television personality Joan Lunden speak at an Advocate Good Shepherd Hospital gala about how her cancer was hidden by dense breast tissue. Foglia promised a $50,000 matching grant. If Yerger raised another $50,000, she could deliver $100,000 to advance MBI research.
That fall, armed with a backpack, some pledges, and a social media campaign to raise the remaining funds, Yerger set off. A 500-mile trip on foot is a daunting challenge, especially one that starts in the mountains. But Yerger, whose longest walk previously was a hike around Geneva Lake in Wisconsin, said that despite her ongoing cancer treatment, she never wavered. “No. Not once,” Yerger said. “I wasn’t going to quit. I needed to rest after the first three days, but I also knew that if I could do that hardest part, I could do all of it.”
As Yerger walked the Camino, she updated Foglia on her progress, blogged on her website, and posted on social media every day. Still, in the final third of her trek, she had not reached her $50,000 target. “I wasn’t sure I’d make it,” she said. “I wondered if people wanted to see if I finished.”
In the final week, the donations suddenly poured in. Forty days after she first set foot on the path, Yerger was exhilarated to achieve her dream of walking the entire Camino De Santiago, and to reach her fundraising goal. “I thought, ‘Oh my God, I actually made it,’” she said. “It was the culmination of the whole trip. So many people contributed, many who I didn’t even know.”
After cutting a check for the matching funds, Foglia went even further in his support of MBI. He later provided lead funding to underwrite the second phase of Rhode’s trial.
He then contacted Advocate Good Shepherd and offered to bring MBI to Barrington. “I’ll buy the machine,” he proposed. “Then we’ll have the best technology available in the world.” Foglia was pleased to help expand the personalized screening program. “I’m a strong believer in community hospitals. We live here in Barrington,” he noted. “This will help so many people. Women will be able to use this right in our community and won’t have to go for treatment downtown.”
The Advocate Good Shepherd Breast Care Center plans to begin offering MBI screening this fall, making it one of only about 30 breast centers in the United States with the technology. That puts Barrington at the leading edge of personalized breast cancer screening, according to Rosen. “We want the right test for the right person for the right reason,” he explained. “It doesn’t replace what we’re doing; it enhances it.”
With MBI, the Breast Care Center can provide a full range of personalized screening. Rosen stressed that the tests do not replace mammograms. “The best situation is to have all of those supplemental modalities available. It will help us diagnose cancers earlier, which will save lives.” Rosen said.
Supplemental screening options include 3D mammogram, ultrasound, MBI, contrast-enhanced mammogram, or MRI. Each is best suited for different situations. For example, mammograms provide excellent images for women whose breasts are not dense. MRI is the most sensitive test available, but its high cost is prohibitive for screening and it is mostly used for women already diagnosed with cancer.
MBI fills the gap between where a mammogram is ineffective, and MRI is too expensive. Rhodes’ research shows that it catches nearly as many cancers as MRI at one-tenth of the cost and with a radiation dose comparable to 3D mammography.
Unlike X-ray based mammograms, MBI uses a high-resolution gamma ray camera and an injection of radiotracer. Cancer cells readily absorb the radiotracer, giving a clear image of a hidden tumor, even in extremely dense breasts. Although it takes longer, about 40 minutes, it is more comfortable than mammography because it only requires light compression to stabilize the breast.
Rhodes (who has no financial stake in MBI technology) said the centers currently using MBI are seeing excellent results. “The ones that have it rave about it,” she said. “One radiologist told me, ‘Once you’ve seen what this technology can do, you will never go back.’”
She added that the MBI trial, which is about halfway complete, is not just finding small cancers that can wait until the next mammogram. “Quite a few of them were large cancers that had clearly been there a while. And the vast majority were invasive cancers, which means they had the potential to invade beyond the breast,” Rhodes said. “And there’s no question that the earlier detection of those cancers, the better. The whole reason we do screening is to detect those cancers before they spread outside the breast.”
Yerger is thrilled that Barrington is among the early adopters of MBI and is actively advocating for other area medical centers to do the same. “Somebody’s got to lead. It might as well be us,” Yerger said. “We have the resources so that we can be the example to so many places. We want to get the word out all over Chicago.”
Rosen, Rhodes, and Foglia all praised Yerger as a catalyst for action. Rosen credited her with making MBI screening possible at the Cancer Care Center. “If it were not for Leslie, we would not be getting it,” Rosen said. “She is an example of how one person can make a difference.” Rhodes said Yerger’s help came when her team felt discouraged at the lack of available funding. “Leslie has just been a gift at the time we most needed it,” she said. “She’s gotten us to the next step, and we are really energized now to get this trial done and show the potential of MBI to fill in this huge gap in screening for women with dense breasts.”
Yerger deflects the compliments. “It really took a village for this. Vince, Bob, Dr. Rosen, and Dr. Rhodes all made it possible.”
While she’s pleased that she reached her fundraising goals, Yerger said the long hike also changed her personally, clarifying her priorities and goals for the future. She is determined to educate women about their options, so that her cancer story does not become their story. “I want to disrupt how we are currently doing breast cancer screening, so that we can then do it better.” After completing the Camino, she wrote a book. “Probably Benign” is a memoir of her trip, with information about breast density and MBI.
She also created a speaking program called “BE THE BOSS of Your Breast Cancer Screening” to educate and empower women and to encourage them to “go out and get what they deserve to have.” Yerger speaks to corporate lunch and learns, clubs, and philanthropic and other organizations. She also does interviews and appears on podcasts to spread the word.
“There is always resistance to new technology, but there is eventually some tipping point where new technologies become the norm,” she said. “I am committed to helping to ‘tip’ us into the norm of additional screening for women with dense breasts.” “Awareness is fantastic,” she added, “But now, let’s do something.”
Still under treatment, a recent checkup showed no visible active cancer. “I am enjoying my family, enjoying my life,” Yerger said. “I will just keep going.”
Although the COVID-19 pandemic postponed her plans to return to the Camino Frances, Yerger said she can’t wait for the day she is back on the path. “I will do it again someday. I loved it so much, and I’d like to see what it’s like to walk the exact same thing and have a completely different experience.”
To learn more, purchase the book, or contribute to Dr. Rhodes’ research, visit Yerger’s website at https://leslieferrisyerger.com. “Probably Benign” can also be purchased at ANUYU Boutique in Lake Zurich.
The Density MATTERS study still needs funding for its final phase. To contribute, visit https://philanthropy.mayoclinic.org/walk-the-way
The 500-mile-long Camino Frances is one of the most famous pilgrimages in the world. It begins in the French Pyrenees Mountains, sweeps westward across the Rioja wine region and over the vast central plains of Spain, and ends at the Cathedral de Santiago de Compostela, which is reputed to house the remains of Saint James the Apostle.
Leslie Ferris Yerger, diagnosed with stage 4 breast cancer just a year earlier, spent 40 days in the fall of 2018 hiking the path solo. She had no set plans or agenda, just a deep conviction that it was something she was called to do. “It gave me time to think about everything,” she said. “Things became clear, about how I wanted to live and the things I wanted to do.”
Yerger said she relished the feeling of community. Friendships formed among the hikers, some of whom stayed together in a “Camino family,” and others who went their separate ways. “I loved the community feel, knowing that I’m just one person of many over the centuries who have been part of this timeless community,” Yerger said.
Although there are hotels available, Yerger embraced the camaraderie in the humble traditional albergues, which are often large open bunkrooms containing dozens of beds. Some church-run albergues still operate on donativo, meaning give what you can, and take what you need.
That spirit of generosity extends to the rest stops that appear regularly along the trail. Local people set out fruit, juices, a place to sit, and even hammocks for weary hikers.
When she finished the route, Yerger attended a pilgrim’s mass at the massive cathedral in Santiago. She was thrilled to chance upon a day when its 175-pound Botofumiero swung through the church, filling the air with incense. “It’s meant as a blessing to send the pilgrims out into the world to do what they are meant to do after their pilgrimages.” Yerger explained.
Yerger recommends Camino Frances to anyone, adding each should do it in his or her own way. Hikers can start anywhere along the trail and can even hire companies that handle all the logistics. “There’s no judgment. Just go and get out of it what you are meant to,” she said.
Yerger hopes to return to do the same route in the same way, but expecting a completely different experience. “I will once again be a free spirit, making no reservations or other plans.” Yerger said. “I think I get the most out of it that way.”
What if your mammogram report says you have dense breasts?
Under Illinois state law, medical providers are required to notify women when their mammogram classifies their breasts as dense. The notification is intended to raise awareness, but it can also raise questions about what to do next.
If you receive notice that you have dense breasts, Dr. Barry Rosen, medical director of the Advocate Good Shepherd Breast Care Center recommends these actions:
Robin Ross is a Barrington-based freelance writer and lobular breast cancer survivor.
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