Arrow Big Smoke — Indigenous Cancer Patient Navigation

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Arrow Big Smoke, a proud member of the Piikani Nation, supports Indigenous people in Alberta impacted by cancer.

Finding yourself in the medical world, juggling appointments, therapies and treatments is intimidating. It’s even more complicated if you speak another language or have unique personal needs. With the support of enhanced navigation for certain patient populations, these patients and their families are better able to focus on healing and less on figuring out a complex health care system. One of these navigation services includes the current Indigenous Cancer Navigation Program.

Over the last few decades, cancer rates in Indigenous people have increased rapidly, with patients typically being diagnosed in the later stages (stages 3 and 4). Due to barriers to screening programs, long distances between home and cancer centres, and a lack of culturally-appropriate care and understanding, Indigenous patients are more likely to experience reduced quality of life and poorer outcomes.

Arrow Big Smoke, a proud member of the Piikani Nation, is passionate about providing quality health care for Indigenous people. Having worked in health care for over 10 years, she has personally and professionally witnessed the barriers that many Indigenous patients face when entering the health care system. “Throughout my journey, I have worked with and have seen Indigenous clients in emergency and cancer care, and I continually find that there are still gaps in understanding,” she says. “I have personally seen and experienced biases in health care, and that’s part of what fuels my passion to do better.”

In her role, Arrow, a registered nurse with specialized training in cancer care, helps patients understand their treatment pathway and manage some of the barriers and challenges they may face. This includes acting as an advocate and voice for patients and helping health-care professionals to better understand Indigenous peoples and their cultural ways, as well as the historical trauma that can affect a patient’s ability to access health services.

Arrow believes that providing this level of compassionate and personalized care to people that might otherwise fall through the cracks is an integral aspect of the navigation service. Not only does Arrow support patients through the healthcare system, she also focuses on closing the gaps by working with other professionals to develop and connect Indigenous patients to programs and community resources that support and advocate for them through their cancer journey. “I’m working closely with other providers to contribute to a system change,” shares Arrow. “But there’s still a lot of work that needs to be done to acknowledge bias and stereotypes within the health system. It deters people from wanting to come and see us.”

With an increased commitment to services for certain patient populations, including Indigenous patients and their families, Arrow is optimistic that the new Calgary Cancer Centre will work towards being an inclusive space where all can feel safe visiting and accessing treatment and care.  

This is our moment. Our once-in-a-generation opportunity to transform the landscape of cancer research, care and treatment. We’re ready to OWN.CANCER. Are you with us?

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OWN.CANCER campaign aims to change Canadians’ cancer stories — for the better

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Chancellor Deborah Yedlin tells her mother’s story, just one example of hope

In 1962, Tova Yedlin was balancing an already full plate, in the midst of earning her PhD in history and raising her two children. It was also the year that she received a devastating cancer diagnosis.

“My mother was visiting her parents in Montreal when she felt a lump in her breast,” says Deborah Yedlin, Tova’s daughter and chancellor of the University of Calgary. “We came back to Edmonton and she went to her doctor. He referred her to a surgeon who performed a radical mastectomy.”

Being just a year old at the time, Yedlin doesn’t remember her mother going through treatment. In fact, it wasn’t until she was 17 that she learned of the diagnosis. Even her brother, who is 12 years her senior, was not aware of what their mother had gone through.

“My brother and I just pieced it together ourselves,” she says. The conversation took place one evening when the family was sitting shiva — part of the Jewish mourning cycle — after their grandfather’s passing. “We went to our mother afterwards and said, ‘Tell us your story, because you’ve never shared any of it.’”

Tova hadn’t shared the experience because she didn’t want to worry her children. “As a survivor of World War II, she had this survivor mentality of just wanting to deal with challenges and move on,” says Yedlin. “And (her cancer experience) was unlike today’s where you have a network of people who help you, bring you food. My mother told only one friend, the one who took her to her radiation treatments.”

Today, with half of all Canadians facing a diagnosis in their lifetimes, cancer is so ubiquitous that not seeking help is often not an option. And when a close friend was diagnosed with breast cancer in her early forties — the same age at which her mother was diagnosed — Yedlin knew she would receive the needed support through her treatments. What was surprising, however, was that the protocol was not much different than what her mother received 40 years earlier.

Deborah Yedlin with her mother, Tova

“The only difference in the treatment (my friend) received versus what my mother received was that there was a lumpectomy instead of a radical mastectomy,” she says. “I was fascinated by how much hadn’t changed in that time.”

That innate curiosity and passion for the cause made Yedlin an obvious choice to co-chair the Calgary Cancer Centre Campaign, which is on a mission to raise $250 million in support of improved prevention, detection and treatment of cancer at the new Calgary Cancer Centre.

“I believe very strongly in the need to leverage the existing research at UCalgary,” she says. “We already have some fantastic success stories, whether it’s the Calgary protocol for stroke treatment — which has now been used around the world — or our expertise in treating Crohn’s disease and colitis, multiple sclerosis, and the incredible research taking place in the realm of glioblastoma . . . we’ve been making some incredible progress in Calgary. We’re good at finding opportunities to go beyond the status quo, to leverage our strengths and have impact.”

The Calgary Cancer Centre is such an opportunity. Together with Alberta Health Services and the Alberta Cancer Foundation, UCalgary is realizing an ambitious dream — to build the largest, most comprehensive stand-alone cancer care centre in Canada. Construction is already underway, with doors set to open in 2023.

The centre will break down silos, bringing together the right people with the right tools under one roof — something Dr. Don Morris, MD, PhD, the project’s medical lead, says is essential to transforming cancer research and care.

“It takes a village to improve patient care,” says Morris, who also heads the Cumming School of Medicine’s (CSM) Department of Oncology and serves as facility medical director at the Tom Baker Cancer Centre. “Whether you would define yourself as a clinician, a researcher, or part of the patient’s health-care team — it doesn’t matter who you are, you’re part of that village.”

The community at large also plays an integral role in the campaign. OWN.CANCER isn’t just a slogan or tagline, it’s a call to action. By supporting the Calgary Cancer Centre, you’re not only helping your fellow Albertans, adds Morris, you may be helping yourself or a loved one down the line.

Dr. Jennifer Chan, MD, scientific director of the Arnie Charbonneau Cancer Institute at the CSM — the research institute affiliated with the Cancer Cancer Centre — seconds that, noting the importance of community support, whether that’s donating, volunteering, participating in research or simply spreading the word. “If we want to improve everybody’s health, we need everybody on board and engaging with research,” she says.

Philanthropy is an integral part of that support, as that additional funding allows the centre to move quickly, to hire people and purchase equipment as potentially game-changing opportunities arise.

“There are many types of funding mechanisms, such as federal funding and provincial health-care budgets, but among these, philanthropy is uniquely agile,” says Chan. “It keeps you nimble and responsive, so one is able to capture opportunities.”

“This is about offering hope. It’s about moving Alberta forward,” she says. “We’re transforming cancer care in the short, medium and long term. It’s a sign of what Calgary can be and what we can do together when we recognize there’s a need.”

And from a personal standpoint, Yedlin knows what this will mean for people living with cancer — people like her mother and her friend.

“My mother survived. She finished her PhD and lived to age 96. And my friend is clear now, thank God for that,” says Deborah Yedlin. “But in the interim, I’ve also lost a friend to glioblastoma and I have another friend who has stage-four lung cancer. It just doesn’t end. And that’s why you’ve got to act. That’s why we’re doing this.”

 

As originally published at the University of Calgary News

Dr. Huiming Yang – Medical Director, Screening and the Provincial Medical Officer of Health, Healthy Living at Alberta Health Services.

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Alberta has all the right ingredients to be leaders in prevention and screening. Talent. Data. Technical Know-How. Machine Learning. Passion. Bringing all of those pieces together in the Calgary Cancer Centre will allow us to change the way we prevent and detect cancer. Dr. Huiming Yang explains the benefits of this system.

“I like to think of precision screening as ensuring we’re giving the right test, the right service to the right people,” says Dr. Huiming Yang, Medical Director, Screening and the Provincial Medical Officer of Health, Healthy Living at Alberta Health Services. “If we do this well, we will spend the right resources on the right people and it means much more precise intervention when it’s needed and no interventions when it’s not.”

“Alberta has true leaders in Artificial Intelligence and Machine Learning and we have great data in this province. We could wait for others to do this work or start it now and really be leaders around the world. The Calgary Cancer Centre will help us generate those patterns that will affect outcomes. The earlier we identify and detect cancers, the better chance of a cure and survival.”

We’re on the precipice of big changes in prevention and screening. Until now, we’ve taken an “average risk” approach instead of focusing on identifying which individuals are at higher risk and when. At the clinical level, when someone had an abnormal result, there would be diagnostic follow-up. It was that simple. Now, technology and a better understanding of disease progression should allow us to be much better when it comes to screening.

The use of Artificial Intelligence and Machine Learning brings a whole new level of sophistication to screening and surveillance. Humans can only take in so much information, says Yang. Machines are capable of massive learning and can give precise recommendations, allowing health-care teams to target the population in most urgent need and take the services to where they are. 

For example, in Alberta there are about 1.3 million people in the target population for cervical cancer screening and we currently screen close to 70 per cent of that population. Many don’t need to be screened for a variety of reasons while others who are being missed, should be. It’s a huge benefit to the health-care system—and to individuals–if we can determine who needs it most. 

With the Pap test, for instance, pathologists look at cells on a slide to determine if what they’re seeing might lead to cancer. “There’s some human subjectivity involved with what is being seen and what the recommendation is,” says Dr. Huiming Yang. Now machines can determine which cell combinations and other risk factors are indicative of a higher risk of developing cervical cancer and compile all the data to identify who should continue to be screened or screened more often. Machine learning can also apply to breast cancer screening to determine who needs a supplemental ultrasound, for instance, and who doesn’t. 

“Machine learning can help us pinpoint the pattern human eyes can’t see,” says Yang. “The computer can tell you all kinds of things and identify patterns of concern. It reduces possible harm with every test done by giving a very precise recommendation. It will say ‘this person should have this test and this one should not.’”

Alberta is a leader in Artificial Intelligence and Machine Learning and has unique capabilities when it comes to big data access and analysis. The Calgary Cancer Centre will provide an opportunity to consolidate some of that knowledge and work with colleagues across the province to be pioneers in this field. “This feels like the perfect opportunity to me,” says Dr. Huiming Yang. “Rather than wait for others to do this work, we can start it now and be leaders. I’m convinced that in five to 10 years from now, most people who do not require screening will not have it done and those who do need it will get the right test(s) at the right time.”  

This is our moment. Our once-in-a-generation opportunity to transform the landscape of cancer research, care and treatment. We’re ready to OWN.CANCER. Are you with us?

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The Gold Standard In Care: Calgary Cancer Centre

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Opening in 2024, the Calgary Cancer Centre will be a hub for health care, science and research, boosting the quality of cancer treatment while bringing economic returns.

Photograph (left to right) of Heather Culbert, Deborah Yedlin and John Osler at the Calgary cancer Centre by Jared Sych.

On schedule to open in 2024, the Calgary Cancer Centre will be the largest standalone comprehensive cancer centre in Canada.

“It will be right up there with the leading cancer centres in North America,” says John Osler, one of three co-chairs for the centre’s capital campaign. Led by the Alberta Cancer Foundation, Alberta Health Services and the University of Calgary, the campaign aims to raise $250 million to fund programs and equipment, enhance patient care and advance new and innovative ways to detect and treat cancer.

Osler, a former chairman of the Alberta Cancer Foundation and cancer survivor, has teamed up with fellow co-chairs Heather Culbert and Deborah Yedlin to fulfill the vision of turning Calgary into the gold standard for cancer research, prevention and care.

“Cancer touches all of us,” says Yedlin, a community leader and journalist whose mother survived breast cancer. “What’s interesting is that my mom’s treatment in 1962 was not that different from a friend’s treatment 20 years ago. And we’re still looking at the same type of protocol. That really struck me. Surely we can do better in terms of evolving treatment. That’s part of what a great promise this new cancer centre will have.”

Culbert, an active volunteer and philanthropist, agrees. She saw first-hand the strain on resources during her mother’s cancer journey and advocated for a new cancer centre for years. Of all the community work she does, she sees this project as her “lifetime calling” and wants more Albertans to get involved.

“We finally have the bricks and mortar piece committed by the government, but it doesn’t give us everything we need to fulfill our vision,” Culbert explains. “The only way to get there is for the community to step up and be part of the solution. Everybody needs to own this, either in a small way or by really stepping up big.”

The new centre will set Calgary up to become a thriving hub for health care and science, taking advantage of the existing research excellence happening through the centre’s partner, the University of Calgary.

“We need to harness the brains here that are our renewable resource and use them to support an economic renaissance that’s substantial,” says Yedlin.

“This centre of excellence will attract the best and brightest minds, which will reflect exceptionally well on broader health care and research,” adds Osler. “It’s a great story for our city and will help Calgary diversify.”

The centre won’t just mean great health-care returns, but also economic benefits. Yedlin points to how other cities have similarly transformed themselves.

“Consider Pittsburgh,” she says. “As the market changed, a collective, concerted effort was made to focus on ‘eds and meds.’ Now it’s a world-leading health centre. Calgary could do the same.”

Collaboration has made the centre a reality and will continue to be key to ensuring the best in cancer care and research.

“It’s really important that Albertans know we have this collaborative model, ensuring representation of all groups at the table,” says Culbert. “We need to own cancer, and the centre will make that possible.”

“It is visionary,” says Osler. “But most importantly, it will save lives.”

 

As originally published in Alberta Cancer Foundation’s leap magazine.

Dr. Miranda Fidler-Benaoudia – Improving care for young cancer patients

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Battling cancer – and winning – is just the beginning for survivors, especially those who beat cancer in their teens or young adult years. “Compared to children or older adults, cancer in adolescents and young adults has generally been overlooked in research globally, and that’s why I wanted to work with this group of cancer patients,” says Dr. Miranda Fidler-Benaoudia, Ph.D.

“Young cancer survivors have complex needs related to the challenges of being diagnosed with cancer during critical development, social, and reproductive years.” – Dr. Miranda Fidler-Benaoudia

The cancer epidemiologist is deeply passionate about improving cancer care for adolescent and young adult (AYA) survivors. She uses data linkages and questionnaires to understand the health and economic impacts of their experiences later in life, from chronic health issues and infertility to sexuality, premature ageing, delayed milestones and financial stability. This paves the way for new prevention strategies, supports, policies and care pathways.

“These individuals have decades of life ahead of them that may be affected by their cancer. That’s more time for things to happen. Anything we can do to help improve their lives and prevent adverse impacts – that’s immense,” she says.

Dr. Miranda Fidler-Benaoudia trained in the United States, the U.K. and France, including as a post-doctoral fellow with the World Health Organization’s International Agency for Research on Cancer. She chose to join the Arnie Charbonneau Cancer Institute because of the strong commitment from Alberta Health Services and the University of Calgary to support adolescent and young adult (AYA) research and the unique opportunity to study more comprehensive patient data offered by Alberta’s single health authority. 

“We are able to understand the full journey of the survivor through Alberta’s health care system. It’s a major opportunity to access big data and comprehensively understand these survivors’ needs during treatment and afterwards. This is an area of research that Alberta could lead in the country and world.” – Dr. Miranda Fidler-Benaoudia, Ph.D.

Plans to house AYA cancer research and clinical care all under one roof at the new Calgary Cancer Centre (CCC) will be the difference-maker, she says. Patients and survivors can meet up to support each other and participate in age-specific research, across all cancer types.

Opportunities to explore risk factors in this patient group at the CCC could help identify triggers for AYA cancer, which are less understood because it’s rare. This, as the number of teens and young adults newly diagnosed with cancer is growing. She’s excited for the opportunity to help young survivors own their cancers and the rest of their lives, by better tailoring care to the needs of this age group.

 

This is our moment. Our once-in-a-generation opportunity to transform the landscape of cancer research, care and treatment. We’re ready to OWN.CANCER with Dr. Miranda Fidler-Benaoudia. Are you with us?

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Charlotte Kessler

Charlotte’s Story

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Partnering with patients to design the Calgary Cancer Centre.

After a three-hour drive from Medicine Hat to Calgary’s Foothills Medical Centre, Charlotte Kessler walked into her doctor’s appointment in 2013 thinking she was out of the woods. She’d recently had what was believed to be a benign, one-and-a-half-inch mass removed from her frontal lobe, and was assuming her appointment was just a follow-up. But that sense of security was shattered when a doctor she’d never met walked into the room.

“We should start treatment, then,” he began.

Taken aback, she asked, “Treatment for what?”

“Oh, you have cancer.”

It was a shocking moment for Kessler, and one of the experiences that inspired her to become a vocal advocate for the patient experience. As the volunteer co-chair for the Patient and Family Advisory Council (PFAC) for the new Calgary Cancer Centre, Kessler, who completed active treatment for her cancer in 2015, is helping give patients a voice.

Set to open in 2024, the Calgary Cancer Centre will be a first-rate cancer treatment and research centre for Albertans. The PFAC, which is made up of patients, family members and Calgary Cancer Centre staff, was created to address and improve the patient experience from the very beginning of the Calgary Cancer Centre’s design process in 2014. Through regular feedback, PFAC volunteer members have helped shape everything from the Calgary Cancer Centre’s overarching design principles to wayfinding and the space’s amount of natural light. Alberta Health Services also plans to engage PFAC in the centre’s continued operational planning.

Charlotte Kessler joined PFAC as one of the original members at the Tom Baker Cancer Centre in 2014. She had finished radiation and one year of chemotherapy and had one more year of chemo ahead of her. The committee gave her the chance to turn her experiences — unpleasant and otherwise — into an opportunity.

“I had a wide variety of experiences as a patient,” she says. “From terrible to exceptional and everything in between. This was a way to make something positive out of my experiences while also having a hands-on influence on the future of cancer care.”

Once she joined PFAC, she found that other members shared similar stories.

“It was definitely a great foundation for building trusting relationships and mutual respect,” she says. “It imbedded our common goal, to ensure the patient’s voice is heard, really quickly.”

Now, as the co-chair of PFAC, Kessler has spent the last six years working with other patient and family advisors through engagement sessions, focus groups and meetings. With monthly meetings from September to June, along with other consultations as needed, PFAC works in partnership with Alberta Health Services staff, clinicians, administration, the design builder and Alberta Infrastructure.

“I feel humbled and proud all at the same time to know that our voices are being listened to so intently,” she says. “To see everything coming to light, and see that it’s not just a promise, but it’s actually happening – it’s exciting.”

PFAC has provided feedback on many design features for the Calgary Cancer Centre, including patient rooms, interior design and clinical spaces. Kessler was also specifically involved with the group working on the design of the radiation unit. By nature, the space is required to be in the basement, but feedback from patient and family advisors noted that the current space can feel “cold and distant.”

Through PFAC and staff recommendations, the Calgary Cancer Centre’s new radiation space has been designed to be open and bright.

The waiting area will include both social and more private spaces for patients, as well as window wells for natural light “to give you a sense that there’s still a world out there,” Kessler says. As you walk into the radiation room, it will be brighter, have art on the walls and include a chair, coat hook and shelf to hold patients’ belongings.

“Those things may seem small,” she says. “But when you’re in that world for such a long time, those little things really add up.”

There’s plenty of work left to be done before the Calgary Cancer Centre is complete, but Kessler is certain it will all be worth it when the doors open to Albertans.

“When it’s 100 per cent built, it’s going to be incredible. With this new cancer centre and all it will bring to us as Albertans, we will be able to access world class cancer treatments, research and care.

I truly believe we can all OWN.CANCER. By coming together in support of our loved ones, our neighbours, our communities, and all Albertans through this new cancer centre, we can OWN.CANCER – together.”