Lynch Syndrome Center Guides Family Throughout Cancer Journey 

Written by: Saul Wisnia

The Scragg family always knew it was a possibility, but it still came as a shock. 

It was August 2021, and Mark Scragg, then 33, was undergoing treatment for stage 4 stomach cancer. After just three months of chemotherapy and immunotherapy, scans showed no sign of the tumor first discovered in his stomach that spring – encouraging news for Mark and his large, close-knit Canadian clan. 

Then, however, came more news in October 2021: Meagan Scragg Ziedins, Mark’s older sister, had stage 3 small intestine cancer. The two siblings, who had five young children between them, would now be going through treatment concurrently at the same Alberta hospital. 

Cancer had been on the family’s mind for some time. A year earlier, Mark, Meagan, and their father, Dave, had all tested positive for Lynch syndrome, a common and often under-diagnosed inherited genetic mutation that greatly increases an individual’s risk for developing a variety of cancers.  

Still, the reality of Mark and Meagan both learning they had cancer in a six-month period shook the family to its core. For Meagan, who had already had a preventive hysterectomy to lower her cancer chances, it seemed implausible. 

“When Mark started treatment, I remember thinking, ‘There is no way this will hit both of us,’” recalls Meagan, who was 36 when diagnosed. “Then it did.” 

What gave the family solace in that moment, and continues to do so today, is its relationship with the Lynch Syndrome Center at Dana-Farber. The Boston-based center provides personalized and comprehensive care for families with Lynch syndrome, supported by world-class research and state-of-the-art diagnostics. Meagan, Mark, and Dave receive the bulk of their ongoing cancer screening and bloodwork nearly 3,000 miles away, but they know that Lynch Syndrome Center Director Matthew Yurgelun, MD, and his team are consistently monitoring their care and are available for in-person or virtual consultation whenever needed. 

“We get the same level of support as if we were in Boston, and nobody understands Lynch more than they do,” says Mark, whose cancer remains largely in remission. “They are essentially acting as our remote oncologist.” 

A year after his 2021 cancer diagnosis, Mark Scragg enjoyed the outdoors in Edmonton with his wife, Karly, son, Theodore, and daughter, Ella.

Hope across the border 

More than one million people in the United States have Lynch syndrome, which carries a lifetime risk of cancer that can be as high as 80 percent. The majority of individuals who possess an inherited mutation in one of the five Lynch genes, however, either don’t know it or only find out after developing cancer. Cancers connected to Lynch syndrome include colon, rectal, uterine, ovarian, urinary tract, stomach, small intestine, pancreatic, and other malignancies including certain forms of skin cancer. 

Dave Scragg was among those unaware of his Lynch syndrome status, even though his grandfather and father both had cancer and he developed basal cell lesions (a type of skin cancer) in his 40s. 

“There was no thought of genetic testing in Alberta then,” Dave recalls. “They just removed them, and that was that.” 

When genetic precursors to cancer became more widely investigated in recent years, Dave’s sister started encouraging him to undergo testing. He did, in early 2020, and learned he had Lynch syndrome. The rest of the family were then tested, with the exception of Dave’s wife, Lori. Mark and Meagan also tested positive, while their younger siblings Kelly and Steven tested negative.  

“None of us had ever heard of Lynch, and neither had many of the doctors and nurses we saw up in Canada,” says Meagan. “We started taking precautionary measures, including annual endoscopies, colonoscopies, and skin screenings, and I had my hysterectomy.” 

In May 2021, after persistent fatigue and stomach pain prompted Mark to have his second yearly endoscopy and colonoscopy early, doctors found the tumor in his stomach. Mark had originally chalked up these warning signs for cancer to being the fatigued father of 1- and 3-year-old children.  

“We met with a bunch of specialists up here, and the prognosis was quite poor,” says Mark of what came next. “It didn’t seem like there was much hope, but my youngest sister Kelly started researching different cancer centers for second opinions. Right from the start, Dana-Farber was the most receptive and easiest to deal with.” 

This was during COVID-19 travel restrictions, so Mark received a medical exemption to travel to Boston. Additional scans at Dana-Farber confirmed that the cancer had spread to his lymph nodes, so surgery was not an option. A combination of immunotherapy and chemotherapy, however, might be effective.  

“When we met Dr. Yurgelun, that was the first time we felt hope,” says Mark. “We had always been searching for it, but he gave it to us.” 

Meagan with her husband, Aivars and sons (left to right) Matiss, Kristers, and Maksis at a 2024 hockey tournament in Canada. Note the Boston Bruins cap and shirt, showing the family's loyalty to its second home.
Meagan with her husband, Aivars and sons (left to right) Matiss, Kristers, and Maksis at a 2024 hockey tournament in Canada. Note the Boston Bruins cap and shirt, showing the family’s loyalty to its second home.

Comfortable and thankful 

With the support of Yurgelun and Dana-Farber clinical colleagues, Mark returned to Canada for his chemotherapy and immunotherapy. Mark, Meagan, and David each received personalized care plans from the Lynch Syndrome Center, providing screening and other guidelines to use in monitoring their cancer risk moving forward. Lynch Syndrome Center providers stayed in regular contact with Mark’s Canadian oncology team to track his progress, and Dana-Farber’s International Patient Center to coordinate his care between the two countries.  

“We were able to put together succinct and straightforward recommendations about what needs to happen when, as far as Lynch syndrome-related surveillance care, as we do for our local patients,” explains Yurgelun. “Our care plans help ensure that referring providers are on the same page with us as far as with the appropriate surveillance for a given individual, including who is responsible for ordering specific tests/procedures, and in what timeframe.” 

By the time of Meagan’s diagnosis, she and the family felt so comfortable at Dana-Farber that having her cancer surgery far from home felt right. Like Mark, she returned to Canada for chemotherapy (she was not eligible for immunotherapy) and continued monitoring by the Lynch Syndrome Center. 

“The Lynch Syndrome Center works with all our care practitioners in Canada to provide support on our screening and care,” says Meagan. “They have spoken with my family doctor as well as my oncologist in regard to my treatments.” 

Such close contact has added benefits. 

“We have learned so much from the Scragg family about how to manage Lynch syndrome in a healthcare system that is completely different from the United States,” says Leanne McAuliffe, program manager at the Lynch Syndrome Center. “Hopefully, we can continue to expand our reach to other countries.” 

Today both Meagan and Mark are done with active cancer treatment and feeling good. They are also thankful, knowing their situations could have been worse.  

“In both Mark and Meagan’s cases, their cancers were identified earlier than they would have been without Lynch syndrome specific screening,” says Yurgelun. “In addition, the knowledge that these were Lynch syndrome-related cancers was invaluable in dictating the appropriate treatment for them. As we understand more about how immunotherapy can help treat Lynch syndrome-related cancers, and how immune-based interventions may be even used for Lynch syndrome cancer prevention down the road, I am hopeful that the prognosis for folks like the Scraggs will only continue to improve, especially in cases where we know Lynch syndrome is present.” 

As they continue to undergo their regular screenings and other treatment, the Scragg clan has more good news to celebrate. Mark and his wife, Karly, are welcoming their third child in January 2025. 

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