In the lush foothills south of Calgary, with the Rockies towering at her doorstep and her husband, rescue dogs, and horses at her side, Jennifer Nielsen is planning to live a good long time. At 56, she can easily picture herself still strong and vibrant at 90. There’s only one thing standing in her way: a rare, aggressive form of biliary tract cancer. Jennifer, however, is certain that cancer is just one chapter in the story of her life. And there’s a lot of book left to write.
In 2022, Jennifer was deep into a very good stretch of her story. Decades of hard work as a geoscience technologist in the oil and gas industry had allowed her and her husband Kevin to build their dream home in one of Canada’s most majestic landscapes and to shape the life they wanted. But the first foreshadowing of cancer was already beginning to appear.
“I started having trouble catching my breath while walking the dogs in the hills,” Jennifer recalls. “I was exhausted all the time, both mentally and physically. And then I caught this chest cold that I just couldn’t shake for months. I chalked it all up to getting older in the face of a demanding work life. I’ve always lived a clean lifestyle, but I assumed feeling tired in my early fifties was normal.”
Jennifer pushed through fatigue and minor illness for a year before noticing a recurring pain in the upper right side of her body. This pain took her to her family doctor, where a routine blood test showed slightly elevated liver enzymes. Out of an abundance of caution, Jennifer advocated for a follow-up, where an ultrasound revealed a grapefruit-sized tumour on her liver.
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“It was January of 2023,” Jennifer says. “That’s when everything really began. My doctor did an amazing job. She referred me straight away to a liver specialist at the Foothills Hospital in Calgary, and the staff there have been absolutely incredible.”
Within a month of Jennifer’s first — almost innocuous — blood test, the team at Foothills confirmed the diagnosis: cholangiocarcinoma, a rare cancer of the bile ducts in and around the liver, gallbladder, and pancreas with a daunting prognosis.
There are various factors that can increase your risk for cholangiocarcinoma, such as age, obesity, family history, exposure to certain chemicals, or existing liver problems such as cirrhosis or bile duct stones.
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“The problem with cholangiocarcinomas is that they have very non-specific symptoms, so they’re usually caught incidentally,” explains medical oncologist Dr. Ravi Ramjeesingh of the Nova Scotia Cancer Centre. “You’re tired, maybe you have some weight loss, you could be having some abdominal pains. It could be anything. For a lot of people, especially with busy schedules, it’s easy to assume it’s nothing.”
Research fuelling hope for the future
In recent years, an influx of research has reshaped the treatment landscape for biliary tract cancers. In addition to surgery, radiation, and chemotherapy, novel immunotherapies and genetically targeted therapies can more selectively attack cancer cells. Even with these added options, however, questions of survival, recovery, and cure depend on catching the cancer early, while it’s still resectable (surgically removable).
“The earlier you diagnose it, the better the chance that it might be amenable to surgery,” says Dr. Ramjeesingh. “But, when we look at the data, only about 25 to 30 percent of patients are deemed resectable when they first present. In these cases, when the disease has spread to other organs, we do have newer treatments which are improving outcomes and helping patients live longer and with a better quality of life. But we’re not usually talking about years.”
For Jennifer, thankfully, it has now been a year and counting. And, by her reckoning, there’s a lot of counting left to do. The tumour on Jennifer’s liver was quite large, but it was confined to her liver alone, which meant that — after a round of chemotherapy to reduce its size — surgery would be a possibility. “When I heard about the tumour, I said, ‘I just want it gone. Let’s start the chemo,’” Jennifer says. “I’m a data-driven and practical person. Give me a goal, and I’ll work toward it.”
Finding clarity and community amongst the chaos
Jennifer’s surgery was a success but, four months later, the cancer returned. That’s when Jennifer started reaching out, looking for support and guidance from the biliary tract cancer community. This search led her to Brenda Clayton, the president and one of the founders of Cholangio-Hepatocellular Carcinoma Canada (CHCC). Brenda had also once sought community and, finding nothing on her side of the border, set out to create it herself.
“Our oldest daughter, Rebecca, was diagnosed with cholangiocarcinoma in June 2020,” says Brenda. “It was stage 1 at diagnosis, but by the time she went for surgery, it had metastasized to her stomach. She was started on the standard of care chemotherapy and, until about Christmas, it looked like things were going well. But then her tumour started growing again. We didn’t have all the options that we do now. At that point, there was nothing more that could be done in Canada.”
“Advocacy — for testing, research, personalized treatment, and access to care — is one of the most potent ways to improve outcomes for Canadian patients in the fast-moving field of biliary tract cancer.”
Rebecca passed away in June of 2021, at 41 years old, surrounded by family. Despite her bravery, the roadblocks to her care were difficult for her to accept.
Brenda recalls the challenging conversations near the end as Rebecca laid out her final request. “She wanted our family to continue to fight against cholangiocarcinoma and advocate for other patients,” Brenda says. And so, CHCC was born.
Fortunately, in the three short years since Rebecca’s passing, medical advancements have already increased the options available to those living with cholangiocarcinoma. And so patients who want to keep up with the latest therapies and research need others to talk to more than ever.
“There’s so much to know about this disease, it can be overwhelming,” Brenda says. “The most important things are to get that tumour shrinking straight away and identify your biomarkers as soon as you can. That’s one of the big things we advocate for. Those biomarkers are going to determine what targeted therapies might work for you or what clinical trials you might qualify for.”
It’s also Dr. Ramjeesingh’s view that advocacy — for testing, research, personalized treatment, and access to care — is one of the most potent ways to improve outcomes for Canadian patients in the fast-moving field of biliary tract cancer. “I love that we’re having these discussions,” he says. “The more this conversation gets out there, the more ready we’re going to be to provide access pathways to innovative therapies.”
Taking control of your own destiny
After connecting with CHCC, Jennifer was able to get her own cancer sequenced and receive her biomarkers, revealing that her cancer involved a specific mutation that had already been the target of fruitful medical research. Suddenly, the next chapter of her life was looking much more open.
“Dealing with this cancer is something I have to do now, but it might not be forever,” Jennifer says. “Sometimes there are detours in the story of our life and we come out the other side stronger and open to new things. I’m looking forward to the things I was always looking forward to, like walking my dogs, golfing, and spending time with friends and family. But I’m also thinking about new hobbies and adventures.”
Jennifer looks forward to the unwritten possibilities of her story, grateful not to face them alone. The community that Brenda has built since Rebecca’s passing was a much-needed safe harbour following her cancer resurgence. “Brenda is a godsend, and she’s a force to be reckoned with,” Jennifer says. “The knowledge and skill she brings to our community are amazing. I wouldn’t have had the energy and the know-how to navigate any of this without her.”
Closer to home, Jennifer has relied on her husband Kevin — a paramedic — to help her recognize and appreciate the beauty and the little victories, even on the bleakest days. “When I’m feeling down, he has this incredible ability to point out the small wins,” she says. “No matter how worrying the big picture might be, he’s always able to brighten me up. ‘This has been a bonus,’ he’ll say. ‘Look at all these wins we’re having.’”
This skill for finding the bright spots in the darkness is the fundamental essence of hope. None of us know where our story is going next. And this, in Jennifer’s eyes, is the crux of life. The good parts are not a given, but neither are the bad ones.
“I’m currently on a combination of treatments, but every day I’m here is another possibility,” Jennifer says. “I’m optimistic and curious to see what’s ahead, and I’m comfortable with the uncertainty. Focusing too much on a specific possible future only robs you of your motivation and agency to move toward any of the infinite other possible futures. I don’t think the ending of my story is written yet.”
If you or someone you know is impacted by biliary tract cancer, there is a growing community here in Canada where you can find news on recent innovation, helpful webinars and resources, and a variety of support programs and counselling. Connect with the Cholangio-Hepatocellular Carcinoma Canada (CHCC) community by visiting www.mychcc.ca. Dealing with a rare cancer is hard enough — you don't have to do it alone.
An educational initiative supported by AstraZeneca Canada.
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