5 WAYS YOUR DONATION SUPPORTS BREAST CANCER PATIENTS
SPRING TRAINING
Pro tips for staying injury-free
SPRING 2018
THE EMPOWERMENT ISSUE
RIDING FOR A CAUSE
DEDICATED FRIENDS. DETERMINED FUNDRAISERS. FIERCE ADVOCATES. MEET LINNEA’S LEGION. GARDEN FRESH
GROW YOUR OWN VEGGIES AND REAP THE BENEFITS
ON THE CUTTING EDGE
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TREATING CANCER AT THE MOLECULAR LEVEL
CONTENTS
38 RESEARCH ROCKSTAR Dr. Frank Wuest leads a team of innovators in designing and utilizing nuclear-imaging tools for tracking and treating cancer. 42 TRUE CALLING Carol Baumgarten, director of cancer care teams for Alberta Health Services, believes collaboration and an endless pursuit of knowledge are key to improving patient care.
FEATURES
20 THE EMPOWERMENT ISSUE From early detection initiatives and new methods of knowledge-sharing to advocating for healthy lifestyle choices and raising funds for research, discover some of the inspiring ways people in Alberta are standing up to cancer. COLUMNS/DEPARTMENTS people together for a cause, Alberta’s radiation therapy corridor makes cancer treatment increasingly accessible, and more.
7 FRONT LINE Dr. Aynharan Sinnarajah studies the importance of early palliative care, Edmonton’s Bust a Move event brings
13 YOUR DONATION MATTERS Five ways your donations make life better for breast cancer patients.
14 FOOD FOCUS The many benefits of eating garden-fresh fruits and vegetables. 16 WORKOUT Everything you need to know about training for a cycling or running event this spring. 18 EXPERT ADVICE Tips and insights on cancer screening, and how to travel safely when you have cancer.
32 CARING For more than two decades, Tricia Antonini has made it her mission to share her cancer journey with others, and to make meaningful connections with everyone she meets. 34 LIVING WELL A Calgary-based study is looking at whether group acupuncture sessions can ease cancer-related pain; exploring the calming effects of virtual reality.
46 IMPACT Patient Danielle Chadwick shares her personal success story with brachytherapy treatment. 47 WHY I DONATE Through the Patient Financial Assistance Program, Bob and Gina Church are helping rural families living with cancer. 49 MY LEAP Extreme adventurer Laval St. Germain embarked on a daring journey across the Atlantic to raise funds for cancer research. 50 GAME CHANGER Edmonton-based clinic Femme Homme Medical is supporting a lung cancer screening program.
COVER PHOTO COOPER & O’HARA
myleapmagazine.ca SPRING 2018 LEAP 3
MESSAGE
Taking Charge TRUSTEES
Thomas Hodson, Chair Christopher Burrows, Vice Chair Rene Aldana Dr. Stanford Blade Dr. Heather Bryant Jordan Hokanson Dr. Sandip Lalli Robert (Bob) McGee Andrea McManus Leigh-Anne Palter Dr. Matthew Parliament (Ex-Officio) Gelaine Pearman Jamie Pytel Rory J. Tyler
NEVER MISS AN ISSUITE!
The theme for this issue of Leap is “empowerment.” When you work at the Alberta Cancer Foundation, you see that word take on many meanings, all the time. Whether it’s the need to do something in an event, or it’s by making a transformational gift that will help thousands of people, or by becoming more actively involved in their own health-care journey, Albertans make this definition their own. We are proud when our donors play a role in this journey. From providing patient journals to newly diagnosed Albertans to help manage their care, enabling patients to participate in clinical trials or supporting navigators at all 17 Alberta Health Services cancer centres to help patients and families get a handle on their diagnosis, our donors are there every step of the way. You’ll see real examples of what empowerment looks like throughout this magazine. We feature one of our own staff members, Christiane Gauthier, who along with her family, share their story of what it means to know two of the three sisters have tested positive for a cancer gene passed on by their father’s genetics. You’ll also read the inspirational story of Todd When you work at Kemper, who, in the middle of being a caregiver for his the Alberta Cancer dying young wife and realizing it might be too late to Foundation, the word change Linnea’s course, decided that riding a bike and raising money for other women was all he could do. In “empowerment” takes the 18 months since she’s been gone, his team, Linnea’s on many meanings Legion, and the Enbridge Ride to Conquer Cancer, have all the time. changed his life and so many others for the better. Or there are our partners at the Alberta Cancer Prevention Legacy Fund, who have launched a provincewide initiative that turns the power over to communities to create an environment that gives residents the ability to be healthier. From offering fresh produce for moms-to-be in a First Nations community to providing bike corrals in Spruce Grove, this program is empowering Albertans to create sustainable, healthy spaces. We are privileged to share Albertans’ stories in this magazine and every day. Enjoy this issue of Leap.
VIS
e.ca/ myleapmagazin e ib cr bs su
4 LEAP SPRING 2018
GEORGE ANDREWS,
THOMAS HODSON,
PRESIDENT & CEO ALBERTA CANCER FOUNDATION
CHAIR ALBERTA CANCER FOUNDATION
SPRING 2018
|
VOL. 3
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NO. 9
ALBERTA CANCER FOUNDATION EDITORS
Phoebe Dey and Christiane Gauthier
EDITORIAL DIRECTOR Jill Foran ART DIRECTOR Kim Larson STAFF PHOTOGRAPHER Jared Sych CONTRIBUTORS Andrew Benson, Bluefish Studios, Colleen Biondi, Shannon Cleary, Elizabeth Chorney-Booth, Cooper & O’Hara, Lauren Denhartog, Jennifer Dorozio, Christina Frangou, Jennifer Friesen, Jayme Ford, Mae Kroies, Fabian Mayer, Jennifer Madole, Bryce Meyer, Vicki Nerino, Karin Olafson, Pete Ryan, Lynda Sea, Colin Way, Julia Williams PUBLISHED FOR
Alberta Cancer Foundation Calgary office Suite 300, 1620 29 St. N.W. Calgary, Alberta T2N 4L7
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PRESIDENT & CEO Pete Graves GROUP PUBLISHER Joyce Byrne CLIENT RELATIONS MANAGER Sandra Jenks PRODUCTION MANAGER Mike Matovich AUDIENCE DEVELOPMENT MANAGER Rob Kelly
myleapmagazine.ca SPRING 2018 LEAP 5
FRONT BRIGHT MINDS | BUST A MOVE | UPCOMING EVENTS | RADIATION THERAPY
BRIGHT MINDS
Dr. Aynharan Sinnarajah is examining the benefits of early palliative care for patients with advanced cancer
F
or health systems researcher Dr. Aynharan Sinnarajah, data plays a huge part in transforming palliative care for advanced cancer patients. Sinnarajah, 42, is medical director of the Calgary Zone Palliative/ End of Life Care program, as well as a medical informatics lead physician with Alberta Health Services and an assistant professor in the Division of Palliative Medicine within the Department of Oncology at the Cumming School of Medicine, University of Calgary. “I like visioning and big ideas and thinking about innovation,” he says. “Physicians have a responsibility to colead and co-manage how health systems resources are managed in a publicly funded system like Canada’s. We have to be mindful and prioritize that, which is where evaluation and data come in.” >
DR. SINNARAJAH IS MEDICAL DIRECTOR OF THE CALGARY ZONE PALLIATIVE/END OF LIFE CARE PROGRAM
PHOTO JARED SYCH
myleapmagazine.ca SPRING 2018 LEAP 7
FRONT LINE
DR. SINNARAJAH RESEARCHES EARLY PALLIATIVE CARE IN COLORECTAL CANCER PATIENTS
Originally from Sri Lanka, Sinnarajah went to medical school in Toronto, where he was drawn to palliative care. As he describes it, palliative care is more than just hospices and end-of-life support to ease suffering in a person’s final days of illness. “Palliative care, to me, truly is a person-centred look at where the patient and loved ones are at. It focuses on well-being and quality of life,” he says. “You support the patient’s family from their perspective and try to contextualize that medical information so it’s understandable for that particular patient.” According to Sinnarajah, Calgary has one of the top utilized palliative care programs in the country, but patients aren’t always accessing services in a timely way. Early palliative care — an approach where patients
get earlier access to a specialist palliative provider and/or palliative home care alongside standard cancer treatment — has been gaining traction since a groundbreaking paper by Harvard researchers in 2010. It showed that, in a study of lung cancer patients, early palliative care patients actually lived longer, with improved quality of life. “Palliative care is more holistic than just end-of-life care if it’s integrated into treatment earlier in the cancer diagnosis,” Sinnarajah says. Earlier palliative care can reduce patient and caregiver distress when it comes to transitioning into end-of-life care. In 2013, Sinnarajah completed a master’s degree in public health at Harvard University through a summer-only, three-year course. For his final master’s project, he combed
over data around cancer deaths in Calgary covering a span of eight years. He examined what the last year of life looked like in terms of hospital, emergency room, ICU and palliative care involvement. The data showed 90 per cent of patients received formal palliative care services, but average access was, in general, only two months before death. “So, we didn’t have a problem with access for cancer patients in Calgary, we had a problem with how early patients were being offered an early palliative care approach,” says Sinnarajah. Currently, Sinnarajah is one of the co-leads of the PaCES (Palliative Care Early and Systematic) project. In this four-year study, researchers from the University of Calgary and University of Alberta are looking at the effectiveness of routinely providing early
PaCES AT A GLANCE The PaCES (Palliative Care Early and Systematic) project is a province-wide, four-year study measuring and describing how patients with advanced colorectal cancer use palliative care, cancer care, hospital care and community care services during their last year of life. The study will collect monthly data on patient and caregiver outcomes and health-care impact, which the researchers will use to assess changes when the early palliative care framework is implemented. 8 LEAP SPRING 2018
palliative care support in tandem with cancer treatment for advanced colorectal cancer patients. On the back of support from Alberta Cancer Foundation donors, the project started in 2017, when it received a $1.7-million funding grant from the Canadian Institutes of Health Research (CIHR) and Alberta Health. The team is now assessing how Albertans with advanced colorectal cancer use health-care resources, and how oncology clinicians, caregivers and rural patients are engaged. They are examining the impact of early palliative care on patients, families and health-care costs with the end goal of developing a framework and plan that can be translated across the province. By increasing the number of patients getting earlier palliative care, the aim is to improve patient and caregiver outcomes for people living with cancer. “Whatever we are doing as a health system with palliative care, we need to always be monitoring and evaluating to make sure it’s actually doing what it needs to,” Sinnarajah says, emphasizing how important health systems research is. But, via big wins or small, incremental changes, Sinnarajah says it’s ultimately about improving a cancer patient’s day-to-day quality of life. “Hopefully, a palliative patient 30 years from now who goes through the system has a better experience than the patient today.” LEAP — LYNDA SEA
Outstanding Philanthropist
TERRY MUDRYKHARBARENKO WITH HER TWO SONS, MARTY (LEFT) AND BRYAN (RIGHT)
“It took several months for it to actually sink in, and for me to realize how special and how gratifying, but also humbling, that award was.” – Terry Mudryk-Harbarenko
After his three-year battle with Hodgkin’s lymphoma, Bryan Mudryk was being wheeled out of Edmonton’s Cross Cancer Institute by his mother, Terry, when he told her about his plan. The 19-year-old intended to raise $1 million for the cancer centre someday. “I think, as a mom, she just sort of laughed and said, ‘Yeah kid, let’s let the morphine wear off before we start making promises,’” recalls Mudryk. Now, more than 20 years later, Mudryk is an anchor on TSN’s SportsCentre, and he and his family have raised approximately $1.8 million for the Alberta Cancer Foundation through their charity golf tournament. The Mudryks have hosted the Bryan Mudryk Golf Classic in their hometown of Boyle, Alta., for the past 15 years and Mudryk credits his mother, who organizes the annual event, for the tournament’s success. “My job at TSN has allowed me to have a name that has helped, but she really is the force behind it,” says Mudryk. “She goes out of her way to try to save the world, one person at a time, and I’m really proud of her.” As recognition for her dedication to the community, and impactful work on the tournament, Terry Mudryk-Harbarenko was presented with the Outstanding Philanthropist Award by the Edmonton chapter of the Association of Fundraising Professionals in November 2017. “It took several months for it to actually sink in, and for me to realize how special and how gratifying, but also humbling, that award was,” says Mudryk-Harbarenko. The 2017 Bryan Mudryk Golf Classic raised $80,000 for the Alberta Cancer Foundation’s Patient Financial Assistance Program, while the rest of the funding over the years has gone to various initiatives to improve treatment and care for Albertans facing cancer. LEAP — FABIAN MAYER
Attend the Advanced Cancer Symposium Alberta Health Services is offering a brand-new event for those living with advanced cancer. Taking place on the morning of June 8 and hosted at a number of cancer clinics around the province (including Calgary, Edmonton and Red Deer), the Living Your Best Life with Advanced, Metastatic, Chronic or Non-curable Cancer symposium will focus on providing patients with advanced metastatic or chronic cancer — and their
families — with support and education. Guest speakers will offer ideas and resources on how to maximize well-being when living with cancer, with presentations being broadcast to all sites hosting the event. There will also be a resource fair and light snacks at each location. AHS patient education specialist Krista Marsden says people living with noncurable cancer do not always get enough information and educational support. She
hopes the symposium can help change that while also creating a space for cancer patients to connect. “We are aiming to offer participants a supportive, accessible and interactive forum in which to access up-to-date information that will help them live their best with cancer and create an opportunity to connect with others in similar situations,” says Marsden. LEAP — FABIAN MAYER
Those interested can find out more about the event and register online at app.bookking.ca/ahs_cancerpatienteducationpub/index.asp
myleapmagazine.ca SPRING 2018 LEAP 9
FRONT LINE
THE BAM EDMONTON FUNDRAISER IS A BELOVED EVENT IN THE BREAST CANCER COMMUNITY
Bust A Move for Breast Health Fitness fundraising for future change PICTURE THIS: PULSING, COLOURED
lights fill a 60,000-square-foot enclosed arena where more than 250 people sporting neon-tinted spandex follow the lead of an enthusiastic HIIT (High-Intensity Interval Training) instructor. Forty-five minutes of this passes, and then a kickboxing instructor takes the stage to kick the group into 10 LEAP SPRING 2018
action, only to have a yoga practitioner replace her 45 minutes after that. What you’re envisioning has been nicknamed a “fitness extravaganza,” but the event’s official title is Bust A Move For Breast Health (BAM). BAM is an approximately six-hour, activity-focused fundraiser that is held
FIVE FUN & FAST BAM FACTS 8% of attendees are self-identified cancer survivors
There were 250 participants at BAM 2017, and more than 50 volunteers The average age of BAM participants is 36 The event averages 88% female participants, 12% male The first BAM event took place in 2010 in Halifax, Nova Scotia
each year to raise money for breast cancer research at the Cross Cancer Institute, and to celebrate the breast cancer community. Participants take part in activities that include yoga and ballet barre, and that run back-to-back during the event. “It’s unbelievable. There’s so much energy — even by the sixth hour when people have basically been working out all day,” says Kate Gallagher, one of the organizers of BAM Edmonton.
Gallagher participated at BAM with her “Buxom Buddies” team when the event first took place in Edmonton in 2011. After just one year of attending, she knew her professional experience as an event manager could help make the initiative even better, so she joined the BAM event team. “This is a cause that is near and dear to my heart,” says Gallagher, who has seen breast cancer take lives in her community, and whose own mother was recently diagnosed with the illness. Over the years, BAM events have taken place in various cities across Canada, but Edmonton is the last remaining city in the country that still hosts it — and its next BAM event takes place on June 2 at the University of Alberta Butterdome. “The reason we’re still alive [as an event] is because of the community support we’ve received,” says Gallagher. “It’s a unique event and the community loves it. We just see overwhelming support year after year.” To date, BAM Edmonton has raised more than $2 million in support of the
Alberta Cancer Foundation, where funds are directed toward research and clinical trials at the Cross Cancer Institute. But beyond fundraising, the event serves to bring the breast cancer community together, according to Dr. John Mackey, director of clinical trials at the Cross Cancer Institute and an annual BAM Edmonton volunteer. “I think it’s a reminder that everybody can do things even when they’re difficult,” says Mackey. “We’ve got to look after each other, and this is one way of giving back.” Mackey also believes that BAM helps to demonstrate the benefits of exercise for cancer patients and survivors, and he has even donned a tutu for the event in years past. “BAM is special because we have a strong team from the Cross Cancer Institute that comes out every year,” says Mackey. “Not all fundraisers have that level of involvement from cancer care providers. LEAP — JENNIFER DOROZIO
For more information about BAM, visit albertacancer.ca/bustamove2018. myleapmagazine.ca SPRING 2018 LEAP 11
FRONT LINE
Improving Access Alberta’s Radiation Therapy Corridor is nearing completion A DECADE-LONG PROJECT
to improve access to radiation therapy in Alberta is nearing completion. Known as the Radiation Therapy Corridor, the project will bring 92 per cent of Albertans within 100 kilometres of a radiation therapy clinic, up from 72 per cent. The province began work on adding radiation therapy to three cancer centres back in 2008. The Jack Ady Cancer Centre in Lethbridge opened its new facility in 2010, with Red Deer’s Central Alberta Cancer Centre following suit in 2013. The final treatment centre, a part of Grande Prairie’s new hospital, is slated to complete the north-south corridor in 2019. According to Brenda Hubley,
executive director of community oncology with CancerControl Alberta and Alberta Health Services, and the operational lead for the Radiation Therapy
factor for patients as to whether or not they access radiation treatment,” says Hubley. Roughly 50 per cent of cancer patients require radiation therapy, which uses high-energy radiation to kill cancer cells and shrink tumors, as part of their treatment. Before Lethbridge and Red Deer opened their units, Calgary and Edmonton were the only radiation therapy centres in the province. This posed a challenge for many out-of-town patients, as treatment often involves sessions spread over many weeks. “Leaving home for a week at a time, or sometimes for four and five weeks, is emotionally, financially and physically very difficult,” says Hubley. “Being able to support patients to get safe, high-quality care as close to their home community as possible is a real priority for us.” Hubley says that she has heard many stories of patients in Lethbridge and Red Deer who have consulted with their doctor expecting to have to take a long drive or expensive flight for treatment. “When they were told, ‘No, we’re going to be able to treat
“ Being able to support patients to get safe, high-quality care as close to their home community as possible is a real priority for us.” – Brenda Hubley
Corridor, research shows that proximity to treatment is not only convenient for patients, it also affects treatment choice and can have an impact on quality of life. “When we look at the literature, we actually know that being within that 100-km distance is oftentimes a deciding
you here, and we’ll be able to start your treatment tomorrow,’ [some of these patients] broke down in tears because now they’re actually able to stay home and be closer to family,” says Hubley. Trevor Campbell has seen the impact of the new clinics first-hand. He moved from
Edmonton’s Cross Cancer Institute to manage the new radiation therapy facility in Lethbridge. Campbell says the feedback from the community has been very positive, and that patients are grateful they don’t have to make the two-hour drive to Calgary for treatment. “People really comment that the clinic has a small-town feel. It’s easier to get to, it’s not crowded and not rushed,” says Campbell. “They appreciate the approach that we have at the centre.” The Lethbridge clinic provides radiation therapy to somewhere between 480 and 500 patients every year, according to Campbell. It focuses on treating early stage lung, breast, gastrointestinal and prostate cancers, in addition to offering palliative treatment for all late-stage cancers. “Often [the late-stage patients] are the patients who are less likely to travel,” says Campbell. “They’re not feeling well, they’re in pain, and we’re getting them through a short course of radiation in order to alleviate their symptoms so they can get on living a quality life.” Not only do the new treatment centres benefit patients living nearby, Hubley says they are also helping to improve access across the province — as fewer patients come to Calgary and Edmonton for treatment, there is less pressure on those facilities. “Patients [in Edmonton and Calgary] were waiting four or five weeks for treatment, but those wait times have decreased significantly,” says Hubley. “That indicates to us that we’ve been successful in improving access to care for patients.” LEAP — FABIAN MAYER ILLUSTRATION JENNIFER MADOLE
12 LEAP SPRING 2018
5 WAYS
Your donation to the Alberta Cancer Foundation makes life better for Breast Cancer Patients One in eight women will be diagnosed with breast cancer in their lifetime, and more than 2,780 will be diagnosed with breast cancer in Alberta this year alone. These are a few of the ways your support will directly benefit breast cancer patients in Alberta.
DIAGNOSIS
PREVENTION
Alberta Cancer Foundation patient navigators can ease the complexities of a cancer diagnosis by providing person-centred care to patients.
The Alberta Tomorrow Project is identifying the genetic and environmental components that determine why some people get cancer, and others don’t.
EARLY DETECTION/ SCREENING
The mobile mammography unit can provide breast screening to over 120 rural communities around Alberta.
TREATMENT
Last year, 14 breast cancer clinical trials were launched across Alberta, giving 274 Albertans access to potentially life-saving therapies.
SURVIVORSHIP
Learn more about how you can support the Alberta Cancer Foundation at albertacancer.ca
New recovery interventions and protocols are improving quality of life for patients following mastectomy. Patients are spending less time in hospital with a quicker route to recovery.
The five-year survival rate for female patients diagnosed with breast cancer in Alberta is 90 per cent. myleapmagazine.ca SPRING 2018 LEAP 13
FOOD FOCUS
Garden Ready IT’S NO SECRET THAT GARDENING IS
one of Canada’s most popular hobbies — take a peek over some neighbours’ fences in the summer and you’re bound to see rows of carrots, lettuce and other homegrown goods. In fact, Statistics Canada reports that more than half of Canadian households grow produce or flowers for personal use. Home vegetable gardening doesn’t just put fresh veggies on our tables; the process can also have various physical and mental rewards. Many outdoor enthusiasts and mental health experts believe that gardening has tangible psychological benefits — the work is quiet and meditative, and there’s a certain pleasure in getting one’s hands dirty. Plus, the feeling of being outside and working with natural elements can clear the mind and raise our spirits, while also providing some physical exercise. “Exposure to nature and green things is very beneficial to people,” says Dr. Guy Pelletier, a clinical psychologist at the Tom Baker Cancer Centre. “There’s pretty good documentation on how sunlight and nature can help with depression. People also sleep better when they’ve been out in nature and working in the sun, which is also important.” And then there are the straightforward health benefits that come from simply eating more vegetables. Canada’s Food Guide recommends that adults eat seven to 10
servings of fruit and vegetables a day to get the micronutrients and fibre we all need for our bodies to thrive. Growing vegetables in your own garden offers a convenience factor — the ease of access makes hitting those seven to 10 servings easier to achieve. “Growing your own garden fills out the eating experience in such a wonderful way, because you know the path of the vegetable,” says Rod Olson, who owns Leaf & Lyre Urban Farms, a Calgary-based company that turns clients’ yards into vegetable gardens and then sells the bounty at farmers’ markets and to restaurants. Olson recognizes that growing conditions in Alberta can frustrate some gardeners, so he suggests that novice growers start with crops like kale, lettuce, spinach, radishes and zucchini to ensure success. Warmer weather crops like tomatoes and squash can suffer from the temperature fluctuations between day and nighttime and often require hoop housing or other cover to get them through Alberta’s climate. Sticking to things that you know will grow well can also boost your emotional well-being. “When I talk to people who garden, there’s a satisfaction that comes from producing something and seeing your work come to fruition,” Pelletier says. “If you keep it relatively simple, there are real advantages there.” LEAP — ELIZABETH CHORNEY-BOOTH
Eat Your Veggies Eating a variety of fruits and vegetables is important for anyone looking to maintain a healthy diet, but it can be complicated for those undergoing cancer treatment. Katie Keller, a registered dietician from the Tom Baker Cancer Centre in Calgary, explains the relationship between fresh produce and cancer. For those undergoing cancer treatment, are there specific recommendations for fruit and vegetable intake? Minimizing weight loss is our primary nutritional goal during treatment. I encourage people to incorporate vegetables and fruits into foods that also provide them with a source of protein and are going to get them more calories. Have a banana, but add peanut butter to it. Or dice up vegetables and incorporate them into a sauce or casserole. That way you’re still getting the micronutrients you need, along with the added protein and calories. Are there other fruit- and vegetable-related concerns for cancer patients? Eating can become very challenging when you’re going through treatment, with side effects like poor appetite, nausea and mouth sores. Altering the texture of food is something I suggest. Raw vegetables and fruit can be painful to handle, so cooking them until they’re soft and adding a sauce can really help patients get those vegetables and fruits in. Are specific fruits and vegetables recommended for cancer prevention? A wide variety of vegetables, from leafy greens to root veggies, is recommended. A variety means you’re going to get all of the vitamins and minerals and antioxidants that you need to keep your body functioning and give you the best chance to prevent the risk of cancer development.
Spinach Garden Salad with Creamy Tofu Dressing This garden-fresh salad is topped with a creamy, ranch-style dressing made with silken tofu rather than a heavy cream or mayonnaise.
USE TODFUOF INSTEA M CREA
14 LEAP SPRING 2018
INGREDIENTS 4 cups spinach leaves, roughly torn 2 to 4 radishes, thinly sliced 4 green onions, sliced 1 2 / cup sliced mushrooms 1 2 / cup halved cherry or grape tomatoes 4 oz soft silken tofu 3 tbsp milk 1 2 / tsp vinegar 1 tsp onion powder 1 2 / tsp garlic powder 1 tbsp fresh parsley salt and pepper to taste
DIRECTIONS In a large salad bowl, toss together the spinach, radishes, green onions, mushrooms and tomatoes. To make the dressing, combine the tofu, milk, vinegar, onion powder, garlic powder, parsley and salt and pepper in a medium bowl or a small blender. Blend (using an immersion blender if you’ve put the ingredients in a bowl) until smooth. Taste the dressing and add more salt and pepper if necessary. Dress the salad to taste and toss until evenly coated. Store extra dressing in the fridge for up to three days. Serves 4-6.
GARDENING IS BENEFICIAL TO BOTH OUR PHYSICAL AND EMOTIONAL WELL-BEING
myleapmagazine.ca SPRING 2018 LEAP 15
WORKOUT
Get Race-Ready This Spring You’ve registered for a running or cycling event and are prepared to get outside and start training. With these tips, you can avoid common mistakes and be ready to perform your best later in the season by KARIN OLAFSON WITH THE ARRIVAL OF WARMER
weather, maybe you’ve already registered for one, or several, of the running or cycling events taking place later this season that benefit the Alberta Cancer Foundation. But, before you get too keen, make sure you’re training for that event in a way that will actually help you cross the finish line. Mark Hlady is the head coach of the 16 LEAP SPRING 2018
University of Calgary Triathlon Club, a sports group open to all, which he founded in 1986. Having coached swimming, biking and running for 31 years to athletes of all ages and abilities, Hlady thinks that registering for a race is a good motivator to get outside and get moving every day. And he says even people in remission shouldn’t be afraid of training for a race.
“If you’re recovering from cancer, the most important thing is to communicate with your physician, but exercise can benefit one’s mental and physical health,” says Hlady. “For someone who is in remission, it’s important to be conscious of your body and maybe adapt the workout.” Hlady’s expert training tips and advice will help get your spring training off to the right start.
ILLUSTRATION VICKI NERINO
Take the time to build up properly
A common training mistake Hlady sees is athletes rushing into their training program, going too far and pushing too hard in the early weeks of training. Typically, this will leave an athlete feeling defeated. At worst, it can result in injury. For both running and cycling, Hlady suggests a 16- to 25-week training plan that focuses on consistency rather than volume. “Rather than increasing the number of times you train per week, increase the time you spend per week on your training sessions,” says Hlady. “For example, if you’re training for your first running race, start out running five to 10 minutes in the first week. Then add five minutes to your runs the next week, and five minutes the week after.”
Invest in the right gear
If you’re training for a running event, invest in a good pair of running shoes that works for your running style. Anyone training for a cycling event needs a helmet, but for those training for a long-distance event like the Enbridge Ride to Conquer Cancer, which involves 200 kilometres of riding over two days, additional gear is important.
“If you’ll be cycling 100 km or more, invest in padded cycling shorts. Training for a long event like the Ride won’t be fun or comfortable if you’re wearing just a pair of normal shorts,” says Hlady. “You will also want clip-in pedals and good biking shoes, so you can pull up on the pedals and use all the muscles in your legs.”
Mix it up
Even though your training will focus on running or biking, it’s better for your body and its recovery if you cross-train, which is where you complement your runs or bike rides with other sports. “The advantages of cross-training are that you’re working your cardiovascular system a little differently from what it’s used to doing, and it prevents boredom. It also gives your body a bit of a break,” says Hlady. Adding a low-impact sport like swimming or rowing to your training routine can relieve joint pressure from long runs and rides.
Factor in changeable weather
Springtime weather in Alberta can be unpredictable, and that might mean taking your training session indoors.
“Poor weather isn’t an excuse to miss a workout. If running outdoors isn’t an option, run on a treadmill if you can,” says Hlady. “Be sure to set the treadmill at a minimum of two degrees [incline] — you want it to be similar to running outdoors.” The same goes for cycling. If heavy rain (or snow) could affect your safety on the road, consider moving your workout indoors to a stationary bicycle.
Safety comes first
For anyone training for a bike race for the first time, road safety is paramount. “While cyclists have the same rights as a car, they also need to be as responsible as a driver,” says Hlady. Cyclists should always remember to shoulder check, share the road and, if riding in a group, to ride in single file. Being safe on the road also means considering your route ahead of time. Hlady recommends finding roads with a wide shoulder where you’ll have some distance from traffic, although quiet side roads are also good options. And, of course, never get on your bike without wearing a properly fitted helmet and reflective clothing. LEAP
Find a supportive group Regardless of what race or event you’re aiming to complete, training should be fun. Meeting with a group of friends who have the same goal as you — or joining a running group or cycling club to meet new training partners — can offer an encouraging training environment.
4 Apps to Support Your Training Program
ENDOMONDO This app acts like a pocket personal trainer, encouraging you during your solo bike or run sessions.
MAPMYFITNESS Find great local running and cycling routes, and keep track of your pace, distance and calories burned with this free app.
STRAVA With Strava you can track your riding or running routes using GPS, analyze your training progress and share your races and workout stats with friends.
RELIVE If you’ve recorded your run or bike ride on an app like Strava, Relive can play your training session back to you on a moving 3D map. myleapmagazine.ca SPRING 2018 LEAP 17
EXPERT ADVICE
Q: For what cancers do you recommend screening?
We ask the experts for advice on cancer screening and how to travel safely when you have cancer by FABIAN MAYER
Q: Why is cancer screening important?
DR. HUIMING YANG
CANCER SCREENING PREVENTATIVE MEDICINE IS A CRUCIAL
component of healthy living. Getting screened for certain types of cancer is one potentially life-saving preventative measure people can take. Dr. Huiming Yang is the medical director of screening programs for Alberta Health Services, and we spoke with him about who should be getting screened and how it works.
Screening can identify either precancerous lesions or cancer at a very early stage when treatment is the most effective. If done in a proper way, cancer screening will help reduce the incidence and the mortality of certain cancers.
Q: What’s the process for someone who wants to get screened? They can call their doctor to make an appointment to discuss cancer screening, the pros and cons, and what tests are right for them. In preparation for that conversation they can visit screeningforlife.ca to have a better understanding of risk levels, risk factors, what tests we’re talking about and also the risks of the tests themselves.
We recommend screening for breast, cervical and colorectal cancers. For cervical cancer screening, we recommend sexually active women start screening at the age of 25, and then every three years until the age of 69. For breast cancer screening, women should start getting screening mammograms at the age of 50, and then every two years until the age of 74. And lastly, for colorectal cancer, men and women aged 50 and older should be getting screened every one to two years with FIT [short for fecal immunochemical test] until the age of 74. Those ages are for the vast majority of people who are at average risk.
Q: How do people find out if they are high risk? They should have a discussion with their doctor to determine their risk level. Their doctor will recommend appropriate screening tests for them, but I want to emphasize that the vast majority of people are at average risk for cervical, breast and colorectal cancers.
Q: Can people who haven’t reached those ages still get screened? Unless they are high-risk, we actually don’t recommend that people screen early. The overall benefit to early screening is questionable, compared to potential harms, because the cancer risk is much lower. There is also a higher likelihood of a false-positive result. ILLUSTRATION JENNIFER MADOLE
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MANJU GARG
a higher risk of infection due to treatments they are receiving. There’s also an increased risk of blood clots, as patients may be sitting in cramped conditions for a long period of time.
Q: What can be done to mitigate risks while en route to a destination?
TRAVELLING WITH CANCER
MG: It’s important to get up and move around on a regular basis, about every hour or so, to reduce the risk of blood clots. Patients should also stay hydrated with non-alcoholic drinks and do regular leg exercises.
A CANCER DIAGNOSIS DOESN’T MEAN YOU
have to put away your suitcase permanently. While there may be some extra considerations, many cancer patients are still able to travel. Carlyn Volume-Smith, acting executive director, pharmaceuticals and supplementary health benefits at Alberta Health, and Manju Garg, pharmacy educator at the Tom Baker Cancer Centre, offer their tips for ensuring your next trip goes smoothly.
Q: Can people living with cancer travel? Carlyn Volume-Smith: Most people can travel safely and not have any incidents. The main thing is to be working closely with your physician to ensure you’re fit to travel before you book a holiday. I think having a strong relationship with your clinician and being able to have a frank discussion about whether you can, and what precautions you should take, is key.
Q: What are some of the risks of travelling with cancer? Manju Garg: Some patients can be at
Q: What about once you arrive at the destination? MG: It’s really important to stay hydrated with clean water. Patients may have to avoid tap water and ice, depending on their destination, and instead drink boiled or bottled water. We also advise patients to wear sun protection, practice good hand-washing techniques, make good food choices, avoid insect bites and plan for rest time. It’s also really important that patients don’t ignore symptoms while travelling. If they’re feeling sick, they need to seek medical attention. Finally, it is imperative for patients to check if they can receive any necessary vaccinations or travel-related medications prior to reaching their destination.
Q: What should travellers know when it comes to medication? CV-S: Planning is key. Make sure you have enough medication to last for the whole trip, plus a few extra days. It’s worth taking
a doctor’s letter with you, or copies of prescriptions listing the drugs that you’re taking and the doses. That can help if you need to go see a doctor while you’re away. It’s also worthwhile to inquire with the airline about any restrictions and requirements when it comes to medication and oxygen, and try to travel with your medication in the original bottle.
Q: When should patients absolutely not travel? CV-S: You should think twice about travelling if you have low platelets, low red blood cells, or if you’ve had recent surgery or a stem cell transplant within the last few months. Work with your doctor to see if it’s okay to travel or if there is an appropriate time-frame to wait until travelling post-procedure. And don’t ever travel against medical advice.
Q: What should patients consider when it comes to travel insurance? CV-S: Always ensure you have travel insurance and double-check your policy. There are some plans that only cover medical costs incurred out of country. So, if you travel to a different province and require medical care that isn’t covered under the Canada Health Act, you could actually be required to make that payment. And most plans won’t cover any medical expense incurred when you travel against medical advice. So again, it’s back to working with your doctor, knowing what your conditions are, making sure that you have appropriate travel insurance and knowing what your plans’ limits and restrictions are. LEAP myleapmagazine.ca SPRING 2018 LEAP 19
THE EMPOWE Throughout Alberta, people from all walks of life are standing up to cancer, and they’re improving their own health — and the health of their communities — in the process. Over the next 11 pages, we look at some of the empowering ways Alberta athletes, scientists, community organizations, families and volunteers are taking charge.
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RMENT ISSUE FUNDRAISING
DREAM TEAM
In their quest to raise funds for cancer research, the members of Linnea‘s Legion have formed lifelong friendships and unbreakable bonds by SHANNON CLEARY
photography COOPER & O’HARA
TODD KEMPER RECALLS a saying that goes something like this: if it wasn’t for the darkness, you could never appreciate the stars. His darkness came in late 2014, when his soon-to-be wife, Linnea Mowat, was diagnosed with triple-negative breast cancer at the age of 30. Kemper, as well as Linnea’s family and friends, were spun into a devastating state of helplessness as the relentless cancer consumed a lovely, loving woman. Linnea faced the disease with a braveness and positivity that was almost incomprehensible to Kemper. She did everything she was supposed to do. She was the “perfect patient.” But the cancer was too aggressive, and Linnea passed away in September 2016 at the age of 32. >
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“I asked a nurse, ‘What’s it going to be like?’” says Kemper, remembering the last days he spent with his partner in the palliative care ward at the Grey Nuns Community Hospital, contemplating for a brief moment what sort of life exists after loss. “[The nurse] said, ‘It’s just like a bomb goes off in your life, and you’re going to spend a lot of time just trying to pick up all the pieces.’” That was the darkness. For Kemper, that is and will always be the hardest part of the story. That breaking, he says, opens you up to an authenticity, a rawness that changes your perspective, your purpose and your relationships. “You go through something like that, and without even knowing it, it reveals the friends in your life who are going to be the stars.” In the months before Linnea’s passing, Kemper found a pamphlet for the Enbridge Ride to Conquer Cancer presented by Evraz, a two-day, 200-kilometre bike ride through the Alberta Rockies that raises funds for the Alberta Cancer Foundation. Kemper registered a team, which he named Linnea’s Legion, bought a new bike, and met his minimum fundraising goal of $2,500 in less than 24 hours. Word of his plan spread quickly through friends and social media, and that year, Linnea’s Legion 22 LEAP SPRING 2018
To date, Linnea’s Legion has raised more than $160,000 — funds they know will go directly toward research and compassionate care in Alberta.
LINNEA’S LEGION, LEFT TO RIGHT: MARA ERICKSON, TODD KEMPER AND SEBASTIAN MAKOWSKI
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rode with 16 members — comprised of the couple’s friends, family and co-workers — and raised more than $50,000. The escalation from idea to tangible research funds was “mind-blowing” to the couple. They were overwhelmed by the support. The following year, 2017, was the first ride after Linnea’s passing. It was a difficult time for Kemper and the team, which had grown to 24 riders, but Kemper never doubted that the Legion would continue. “I think the whole world would have forgiven us if we gave up this cause because we lost her,” he says. “But there’s still 4,000 women in Canada who are going to find out they have triple-negative breast cancer this year. We may not know them, but we’re there for them.” To date, Linnea’s Legion has raised more than $160,000, funds they know will go directly toward research and compassionate care in Alberta. The team now has more than 30 members, most of whom have a connection to Kemper or Linnea, and all of whom share a meaningful bond in their mutual commitment to conquering cancer. Sebastian Makowski went to junior high school with Linnea, and has been with Linnea’s Legion since the beginning. With a pervasiveness that can leave you breathless, cancer has impacted his life, too — his wife, Keren, was recently diagnosed with gestational trophoblastic carcinoma, an uncommon, curable pregnancy-related cancer. Kemper
THE EMPOWERMENT ISSUE had never met Makowski before the latter joined Linnea’s Legion, but the team has since become a family of allies who support each other through laughter and grief. That’s why Kemper, who hadn’t been back to the hospital since Linnea’s death, accompanied Sebastian and Keren for her very first chemotherapy session at the Cross. “I walked back in through those doors. I did it so I could support my teammate,” he says. Mara Erickson, one of Linnea’s — and now Kemper’s — closest friends, says that being part of Linnea’s Legion has changed her life in ways that are both practical and profound. “I can’t imagine not knowing some of these people,” she says. The team stays connected all year long, keeping a steady rotation of group training rides, coffee dates and pub nights. But its function goes well beyond that. Erickson and Linnea were the exact same age. She says it’s hard not to consider what her personal fight would look like, if she were ever diagnosed with cancer. “Where would I be ready, and where wouldn’t I be?” she ponders, then adds, speaking of the team, “I do know that I would have an immediate support system.” In January of this year, Linnea’s Legion gathered together for a midwinter party at Cartago in Edmonton. It was a chance to connect team members, sponsors and the extended network of support that has surrounded the group from the beginning. The date, January 20, was also Linnea’s birthday — she would have turned 34. Her legacy was celebrated with cupcakes, champagne, and camaraderie that was formed in the deepest grief and bolstered by the act of doing something, anything, for a greater good. “Everyone has their own goals, but we’re all in it with the same general sense that we’re doing something that is helping,” says Kemper. “You feel so helpless when someone you love has a diagnosis. Getting on the bike, turning the pedals and raising the money is a sense of empowerment.” LEAP
SHARING EXPERIENCES
AN EVERYDAY BREAST HEALTH ADVOCATE by JENNIFER DOROZIO
A BREAST CANCER diagnosis at 23 is anything but funny, but Leah Kirtio says one of the ways she managed having cancer was by keeping her sense of humour alive. Now 32, and cancer-free for eight years, Kirtio says her “inappropriate humour” opens up the conversation about breast health to women she meets. Kirtio’s first mastectomy on her right breast was in 2009 at the Misericordia Community Hospital in Edmonton, one month after her diagnosis. “The initial tumour was basically the entire size of my super-tiny breast,” says Kirtio, with a laugh. Five years later, Kirtio chose to have a preventive mastectomy after gene-testing revealed she was susceptible to developing cancer again. “I’d never had a specific attachment to my breasts anyway,” says Kirtio. “I was like, ‘If I do find my perfect person and have kids, I’d actually like to be around for them.’” As it happened, Kirtio found her “perfect person,” Chad Yaskiw, when they were both volunteering for the Edmonton Bust A Move For Breast Health event in 2012 — a fitness event where participants raise money in support of the Alberta Cancer Foundation. A friend had invited Kirtio to join the event’s inaugural planning committee, and that same friend invited Yaskiw to volunteer, as well. They both accepted — Kirtio as a way to give back to the Alberta Cancer Foundation and Yaskiw to support the cause, as his father was going through cancer treatment at the time. “If it hadn’t been for his experience with his dad’s treatments and surgeries and my [cancer] experience, too, we would have never both been at Bust A Move at the exact same time,” says Kirtio.
The two met while setting up for the event. Kirtio had refused Yaskiw’s help to carry a heavy box of T-shirts, but ended up dropping the box and making a mess. Yaskiw, undeterred, helped her clean up and then proceeded to ask her out. Kirtio and Yaskiw, who were married in January 2016, do their best to be everyday health advocates, and they still volunteer time and money to Bust A Move. Both believe in the importance of a healthy diet and active lifestyle when it comes to facing cancer; they are big fans of exercise and fitness classes, and Kirtio teaches a weekly ballet barre class. “I am a firm believer that being active and healthy can go a long way in prevention and recurrence of certain illnesses, and that balance in life is key to being healthy,” Kirtio says. Kirtio has also found that being open about having cancer is one of the best ways she can provide support to women in the breast cancer community. She talks about the importance of self-examinations in everyday conversations, and women from her classes sometimes even refer their friends to her, should they have any questions about breast cancer. “I wish that when I was going through it there was a young person like me who could tell me, ‘This is what to expect,’” says Kirtio. “If I can help just one person, I feel like I’ve done something good for the world.” After a pause, she adds, “Other than being slightly sarcastic all the time.” LEAP myleapmagazine.ca SPRING 2018 LEAP 23
THE EMPOWERMENT ISSUE
ADVANCING CARE
CRUCIAL TESTS
A pilot program has helped pave the way for access to faster genetic testing for women with ovarian cancer by CHRISTINA FRANGOU
illustration ANDREW BENSON
aware of the possibility of cancer. The disease seemed to stalk her family: her mother died of breast cancer, her brother died of leukemia and another brother survived prostate cancer. Despite her careful watch for signs of cancer, Logan never worried about ovarian cancer. No one in her family had had this type. But in November 2015, following a few weeks of terrible constipation and swelling in her stomach, the fit, then-63-year-old was diagnosed with ovarian cancer by an emergency physician at Calgary’s Foothills Medical Centre. Over the next months, Logan underwent surgery and chemotherapy, and became one of the first women in Calgary enrolled in a pilot program — called GO-BRCA — to expedite genetic testing for women with ovarian cancer. The GO-BRCA program was created by a team of Calgary-based gynecological oncologists and geneticists, and was launched in January 2016 with the aim of speeding up the process of genetic testing for women with epithelial ovarian cancer by offering them counselling in their oncologist’s office prior to testing. Before GO-BRCA, women with ovarian cancer were referred to the Hereditary Cancer Clinic for counselling, which is mandatory in Alberta before receiving genetic testing. But this referral process would often lead to longer wait-list times, posing a barrier to timely testing — women in Calgary with ovarian cancer could wait up to 18 months to find out their BRCA status. In that time, some women died from their disease before they could be tested and their results passed onto family. “We incorporated the counselling into our clinic [at the Tom Baker Cancer Centre], and overall, the benefit was huge,” says Dr. Sarah Glaze, a gynecologic oncologist and one of the founders of GO-BRCA. “The medical genetics team trained our group of gynecologic oncologists and our nurse practitioner. Their training gave us the tools to do the pre-test
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Of the approximately 2,800 women in Canada diagnosed with ovarian cancer annually, close to 15 per cent of those with high-grade serous ovarian cancer have an underlying mutation in the BRCA 1/2 gene.
CLAIRE LOGAN ALWAYS was
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counselling alongside current clinic appointments. By allowing us to do that, the patients were able to get the genetics test done that same day.” Alberta Health Services provided a quality-improvement grant to help fund the pilot project. And now, women like Logan receive their genetic testing results within three to six months. By the first spring after her diagnosis, Logan’s genetic tests confirmed she carried a mutation in the BRCA 2 gene — information vital for her treatment and for her family’s future cancer screenings. “I had always been monitored for breast cancer. Ovarian cancer was never on my radar screen. But my nieces and nephews are aware of this now,” she says. Of the approximately 2,800 women in Canada diagnosed with ovarian cancer annually, close to 15 per cent of those with high-grade serous ovarian cancer have an underlying mutation in the BRCA 1/2 gene. This mutation substantially increases the risk that a woman will develop ovarian or breast cancer. In fact, up to 46 per cent of women with a BRCA mutation will be diagnosed with ovarian cancer. But ovarian cancer is a disease that is difficult to detect, often misdiagnosed, and frequently identified at late stages; women’s lives can be saved if they know they face elevated risks for this disease and are monitored carefully for it. Recently, timely access to BRCA testing became even more critical for women with ovarian cancer, as the BRCA mutation now affects which treatment a woman may receive. In the spring of 2016, Health Canada approved a new targeted-therapy drug, Lynparza, which can improve survival in women with recurrent ovarian cancer and a BRCA 1/2 mutation. Logan, who was diagnosed with a recurrence of her cancer last fall, now takes Lynparza. The growing base of evidence supporting use of Lynparza was part of the motivation to start GO-BRCA in January 2016, says Glaze, who knew that timelier test results would, among other benefits, allow Calgary patients faster access to the therapy drug. In the first 15 months of GO-BRCA, the time it took for women to receive their BRCA results dropped almost by half — down 162 days from 309. GO-BRCA also reduced some of the pressure on counsellors at Calgary’s Hereditary Cancer Clinic. Referrals to
A NEW TOOL FOR PHYSICIANS by MAE KROEIS
the clinic doubled after Angelina Jolie announced in May 2013 that she had a BRCA 1 mutation. The sudden surge in requests for testing — a well-described pattern across North America known as the “Angelina effect” — added to already lengthy waitlists to see a counsellor. Assessments of the GO-BRCA program show that, between January 2016 and March 2017, it freed up about 120 hours’ worth of time that genetic counsellors would have spent with ovarian cancer patients. Dr. Renee Perrier, a geneticist at Alberta Health Services who helped spearhead the program, says all women in a family with the BRCA 1/2 genetic mutation benefit from timely access to testing. The results can be life-saving for women who do not yet have cancer. “Once we identify a woman who has a BRCA 1/2 mutation, it gives us the opportunity to identify women in her family — her sisters, her daughters, her nieces, her cousins, her aunts — who are at increased risk for breast and ovarian cancer who might not have otherwise known,” says Perrier. LEAP
IN JANUARY 2018, Patient Cancer Screening Status Reports became available to health-care providers on Netcare, the electronic system that stores Albertans’ health information. These status reports, unique to Alberta, provide a snapshot of a patient’s cancer screening status for breast, colorectal or cervical cancer. Developed by the Alberta Cancer Prevention Legacy Fund in partnership with Cancer Screening Programs at Alberta Health Services, the Patient Cancer Screening Status Reports pull together some of the key information needed for family doctors to advise patients on cancer screening: whether or not a patient is up-to-date or due for screening and if any further diagnostic follow-up is required. Previously, this information was timeconsuming to track down and difficult to synthesize. Now, health-care providers save time and find their Patient Cancer Screening Status Reports in one place in seconds. And it means that patients in Alberta will be better served with appropriate and timely reminders for screening tests and follow-ups. The Patient Cancer Screening Status Reports came about from the desire to help improve cancer screening rates in our province. “In Alberta, cancer screening is still suboptimal, and our screening participation rates have still not reached our program targets,” says Dr. Huiming Yang, medical director, screening programs, population, public and Indigenous health at Alberta Health Services. “We really want people in the right age groups to be screened regularly at certain intervals. Regular cancer screening is one of the most effective interventions for the prevention and early detection of breast, cervical and colorectal cancer.” Because the initiative is still new, the Cancer Screening Programs team is working on raising awareness that the tool is available. The team will continue to seek feedback. “It’s really a tool for primary care providers, so we really want to make sure it’s easy for them to use in patient care,” says Yang. LEAP myleapmagazine.ca SPRING 2018 LEAP 25
THE EMPOWERMENT ISSUE
THE GAUTHIER FAMILY, LEFT TO RIGHT: JOAN, CHRISTIANE, YVES, MADDIE AND EMILY
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THINKING AHEAD
FAMILY TIES Genetic testing has led three sisters — and their parents — to take a highly proactive role in their future health by CHRISTINA FRANGOU photography BRYCE MEYER
IN 2005, CALGARY elementary school
principal Joan Gauthier was floored by a diagnosis of breast cancer. She knew of no one in her family with cancer. She regularly checked her breasts for little pea-sized lumps like she’d been taught at her doctor’s office, yet her cancer was diagnosed larger than any pea and felt nothing like one. Still, Joan and her husband, Yves, felt some relief. Genetic tests showed Joan carried no gene mutations that put their three teenage daughters at a heightened risk for developing the same disease. And so, it came as a shock to the family nearly a decade later when they discovered their daughters could, indeed, be carrying those gene mutations — through their father’s side of the family. Yves’ sister, following a diagnosis of ovarian cancer, tested positive for mutations in the BRCA 2 gene. >
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Together, the Gauthier girls decided to undergo genetic testing, knowing it was a game of chance as to who had the mutation and who did not.
Every human being, male or female, carries BRCA 1 and 2 genes. When there’s a mistake in the instruction of these genes, they lose their ability to help protect the body from developing cancer. Women with BRCA 1/2 mutations have a 40 to 66 per cent chance of breast cancer — up from 10 to 12 per cent in the general population. The risk for ovarian cancer is also heightened. Up to 46 per cent of women with BRCA 1/2 mutations develop ovarian cancer, depending on the type of mutation, compared to 1.5 per cent in the general population. Men who carry these mutations also face significantly elevated risks for both prostate and breast cancer. Yves’ sister’s positive finding meant he had a 50 per cent chance of carrying this mutation. And, if he was a carrier, odds were two of their three daughters were, too. “So, the decision was made — let’s test me before we test any of our girls. If I didn’t have it, with Joan’s background, we knew it was very unlikely they’d have it,” Yves says. But he does have it. And so, on one of their Sunday night dinners in 2014, Joan and Yves informed their daughters — Christiane, 28, Maddie, 31, and Emily, 33 — that they could carry a gene that put them at high risk for the same disease their mom had years before. Together, the Gauthier girls decided to undergo genetic testing, knowing it was a game of chance as to who had the mutation and who did not. With their mom, the trio went to the Alberta Children’s Hospital to meet genetic counsellor Stephanie Desmarais at the Hereditary Cancer Clinic. They discussed the chance that the girls carried
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the gene and what a positive or negative result could mean. The three Gauthier daughters underwent blood tests to look for mutations in the BRCA 1 and 2 genes. Results showed Emily and Christiane carried the BRCA 2 gene mutation. Maddie did not. In their family of five, two are without the genetic mutation, one of whom has had breast cancer. The other three carry the gene mutation and it’s likely at least one of them will develop cancer. Yves wishes that no one in the family was BRCA-positive, but he always knew cancer ran in his family. Now that the risk is confirmed, he takes comfort in knowing that his daughters will be checked early and often. “That provides a huge measure of comfort. I know that at 30 years old, plus or minus three years, which is the age of our three girls, that they are being checked now. If something comes up, it’ll be detected very, very early. The earlier it’s detected, the better odds you have for a positive outcome,” says Yves, an engineer who has closely followed breast cancer research and outcomes since his wife’s diagnosis. While it’s not easy for a family to learn that they have this elevated risk, the knowledge helps direct screening in people who have not yet been diagnosed with cancer, says Desmarais. It can be the difference between catching cancer early or late. “This means there’s something in their control and now they can be very proactive instead of reactive,” she says. In the Gauthier family, Christiane and Emily have undergone annual mammograms, ultrasounds and MRIs, along with visits to a breast cancer physician every six months in the three years since they first learned of their BRCA status. Maddie, who is still considered higher risk than average due to her mother’s cancer, will start regular screening at 39 years old, 10 years younger than her mom’s age when she was diagnosed with cancer. (In comparison, it is recommended that women have a mammogram every two years beginning at age 50, and speak to their doctor about the risks and benefits of mammography at age 40. See page 18 for more information.) Yves also follows an aggressive screening program, undergoing regular prostate exams and having had a mammogram. Hereditary cancers are rare, accounting for five to 10 per cent of all cancers. So genetic testing is reserved for individuals with known risk factors — a family member with one of the gene mutations, families with highly suspicious patterns of cancer, any woman with ovarian cancer, or a woman diagnosed with breast cancer before she’s 35 years old. Christiane Gauthier, who works in communications for the Alberta Cancer Foundation, says she was surprised to learn this gene was in her family through the parent who has not had cancer. She feels some stress every time she undergoes screening, but takes comfort in the fact that she is being so closely monitored.
“Cancer is a big part of my family’s life and I’ll admit that when my appointments roll around, it brings a level of anxiety with it. But, if they find something, it will be early, and we have the support of an incredible family. I am grateful for that,” Christiane says. Emily agrees. “Knowing that I’m being checked on four times a year takes the heat off tremendously,” she says. Maddie says it’s hard not to worry about her sisters, but feels confident that there’s a good chance any cancers will be caught early and treated successfully. “You’re always waiting for this to develop in some capacity, especially because the statistics with this genetic mutation are so aggressive,” she says. “But I feel confident that they are being set up for the best possible success and that with each passing year, we’re making more advances.” Last fall, the Gauthiers, a fivesome so close they jump in and out of each other’s sentences, were again rocked by cancer. Joan — who’d undergone a mastectomy, chemotherapy
and radiation, followed by five years of hormone therapy medicine after her 2005 diagnosis — was found to have metastases in her lungs and bones. She’s now taking oral chemotherapy for her stage 4 disease. “My approach to it now is that it’s more like a chronic disease. That’s how I’m choosing to live my life right now,” she says. At times, her energy has lessened and her immune system is compromised by the chemotherapy, but she feels good and remains active, and she takes comfort in knowing her daughters are being screened based on their risk. “I was caught off-guard when I was diagnosed the first time in 2005, whereas these girls will never have that surprise. They are being so carefully followed. It’s almost like a gift,” Joan says, adding, “I hope our story encourages high-risk families to talk to their doctor about what kinds of cancer are in their family, and, if it’s appropriate, investigate the possibility of genetic testing.” LEAP
RURAL COMMUNITY INITIATIVES IN CANCER PREVENTION by SHANNON CLEARY
WHEN YOU LOOK around your community playground, what do you see? A place for kids to be active, sure, but do you also see a tool for cancer prevention? In Cold Lake, Alta., community members created an initiative called Playground Passport in 2015, and in 2017, that initiative was given a cancer-prevention lens through the Alberta Cancer Prevention Legacy Fund (ACPLF). With Playground Passport, children receive a passport with fillin-the-blank questions they can complete by visiting local playground sites and identifying the healthy features of the park. For example, does the park have shade structures available for UV protection? Can you spot no-smoking signage, walk to local establishments that offer healthy eating options, or visit a near-
by community greenhouse or garden? It’s an innovative way to engage kids, and their caregivers, in the big picture of cancer prevention. Cold Lake is one of 19 pilot locations —16 rural communities and three Métis settlements — taking part in the Alberta Healthy Communities Approach. Conceived and overseen by the ACPLF, the Healthy Communities Approach aims to improve health and wellness by creating environments that make the healthier choice the easier choice. The ACPLF provides communities with evidence-based data on cancer prevention, as well as the expertise of a locally based Health Promotion Facilitator and access to $25,000 in Community Implementation Funds. The project, which started
in 2016, helps communities identify areas of focus for cancer prevention, develop and implement action plans and track their own success. Stephanie Patterson, operations and implementation lead for this ACPLF initiative, says that rural communities don’t always have the resources and infrastructure to support healthy choices, but they do have the best knowledge of what works for their community—are there safe walking paths, sidewalks, lighting, benches? Do residents have access to fresh, affordable produce? “The project is really guided by the communities themselves,” she says. “It focuses on strengths and positives, as opposed to, ‘You have high cancer rates, so what can we do?’” In Spirit River, Alta., locals
can now be more active thanks to an indoor walking program at the local community hall, the creation of an annual Winter Glow Walk Festival and a fun Gift of Play initiative. And in Mirror, Alta., shared garden boxes have provided healthy food and brought the small community even closer together. Patterson says the goal is to connect and empower these communities to create healthy spaces in a sustainable way. “Most communities have really embraced being part of [the project], and have given so much feedback on what really works and where it can be improved,” she says. “It’s not about a start or an ending, but a different way of thinking and creating health in the community.” LEAP For more information, visit albertahealthycommunities.ca.
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THE EMPOWERMENT ISSUE
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STAYING COMMITTED
A DECADE OF ACTION
The Enbridge Ride to Conquer Cancer celebrates its 10-year anniversary this year. Meet one of the riders who has taken part from the beginning by SHANNON CLEARY
photography BRYCE MEYER
AS TOM MCKAY approaches his 10th year of participation in the Enbridge Ride to Conquer Cancer presented by Evraz, and benefiting the Alberta Cancer Foundation, he can’t help but reflect on the mileage he’s covered so far. Since the inaugural two-day, 200-kilometre event in 2009, McKay has logged more than 1,800 event kilometres, countless training kilometres and has raised close to $50,000 for the Foundation. Like many of the thousands of riders who participate in the event each year, McKay’s motivation stems from a personal connection to cancer. He lost his mother to breast cancer when he was in his twenties, and he was diagnosed with testicular cancer in 2005 — and declared cancer-free in 2011. Then, in 2016, McKay’s younger brother passed away due to pancreatic cancer, six short months after being diagnosed. “In my family, cancer is just a huge problem,” says McKay. “Anything I can do to help, that’s what I’m going to do.” McKay is one of 46 riders who have participated in the Ride to Conquer Cancer every year since it came to Alberta. In his first year, he rode a 1978 Raleigh 12-speed racing bike with the Rail Riders Team from CP Rail. It was his first experience riding amid such a large group and riding for such a long distance — and, thanks to his vintage bike, he did it with no easy gears. 30 LEAP SPRING 2018
“It was tough,” he says. “The route had a lot of wind on day two, and a lot of really tough hills.” Still, McKay was in good shape and he crossed the finish line with a sense of accomplishment, raising just over $3,100. After that, he was hooked, returning year after year to ride, raise funds and reunite with volunteers and familiar riders. He also likes to share his ample experience with new riders each year. “I always look for new riders who look kind of lost at the start area, and I talk to them to reassure them and let them know a bit of what to expect,” he says. McKay has long since replaced his vintage racing bike with a road bike, mounting a yellow “survivor flag” on its back. Over the last 10 years, he has ridden with teams that include the Rail Riders, Paladin West and, most recently, with Team Cross Cancer Institute — the Cross Cancer Institute is where his brother received treatment. Now retired after a long career in finance at CP Rail, McKay no longer fits part of his training into his commute. Finding a five-hour window for a training ride, and dedicating hours to fundraising, means time spent away from his family — but he does it because he believes in the cause. “I’m not a doctor, I’m not going to come up with a cure,” he says. “But by raising money, I feel that I’m helping in a small way.” LEAP
THIS YEAR, THE ENBRIDGE RIDE TO CONQUER CANCER TAKES PLACE AUG. 18 TO 19. VISIT RIDE.CONQUERCANCER. CA/ALBERTA FOR MORE INFORMATION.
TOM MCKAY ON AN EARLY SPRING TRAINING RIDE IN CALGARY
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CARING
TRICIA ANTONINI AS SHE APPEARED IN AVENUE CALGARY’S TOP 40 UNDER 40 LIST IN 2011, IN RECOGNITION OF BOTH HER PROFESSIONAL AND VOLUNTEER ACCOMPLISHMENTS
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Sharing Stories Throughout her 20-year cancer journey, TRICIA ANTONINI has made it her mission to create meaningful connections with the people she meets by MAE KROEIS TO TRICIA ANTONINI, LIFE IS ALL ABOUT LIVING FULLY IN MOMENTS
with other people. Antonini has spent much of her life facing cancer. She was first diagnosed with acute lymphocytic leukemia in 1997 at the age of 23. Bone marrow transplants saw her through two occurrences, but the leukemia returned in 2006, and, following successful battles with flesh-eating disease and pneumonia, she was told a third transplant was not favoured. Antonini and her medical team fought hard (and successfully) to receive the transplant and, miraculously, she recovered. In 2014, she was faced with a new challenge: breast cancer, for which she underwent a bilateral mastectomy and chemotherapy. Then, in 2017, at age 42, Antonini discovered the breast cancer had metastasized to her brain, and she is now in palliative care. Over her 20-year cancer journey, Antonini has found a deep sense of purpose in truly connecting with all those who cross her path: fellow cancer patients in waiting rooms, health-care providers new and familiar, or colleagues she hasn’t seen in years. “Just a smile, and then starting to talk … the feeling that comes from those conversations and interactions is so good,” she says. “It feels like you’ve engaged the moment. You’ve not just let it float by. You’ve given paint to it, and you’ve taken paint from it.” An accountant by trade, Antonini has a passion for painting and is an artist at heart. She sees beyond words and circumstance to the masterpiece that is created when people share their stories with one another. “The whole purpose of being here in this human experience is to impact and learn from each other,” she says. “Sharing stories is the best way to do that.” Antonini has been sharing her own story for more than 10 years through her blog, Tricia’s Tides. The blog began as a way to keep close friends and family up to date on her condition, dissuade visitors when her immune system was vulnerable and acknowledge the lighter side of things through humour to help loved ones feel at ease. Tricia’s Tides has only grown in importance for Antonini, and, at more than 100,000 page views, her audience has grown, too — readers respond to her experiences and her candour. “Inevitably, you’re hesitant to share bad stuff with people. That’s just the way our society is. But I think there’s such value in sharing where we have challenges and what we’re doing about it,” Antonini says.
She receives feedback from people around the globe about how sharing the details of both her good and bad times has made a difference, however small, in their lives. “Everyone takes something different from the blog because they’ve had a different life, they’ve had a different path,” she says. “People have told me they’ve read [something from the blog] that made them take action. It might just be a slight adjustment to how they were approaching their own challenge, but it helped. That, to me, is the goal.” The blog isn’t the only way Antonini reaches out to others. A member of the Cancer Provincial Advisory Council and a patient advisor to the Cancer Strategic Clinical Network, she has given countless presentations and speeches and doesn’t hesitate to share her story openly with anyone who asks, including nursing students, hospital administrators and families facing cancer. What some may call bravery is her way of advocating for a smoother road for all patients who may follow in her path. “The bravery is just in being truthful. And that’s something that can be hard,” she says. “But everyone faces challenges; that bravery is all around us. I’m not the only one [sharing my truth], I’ve just got a cancer label on it.” Antonini’s cancer journey has also inspired her to create a body of visual art — largely paintings — and short writings that accompany the visuals, to communicate life learnings she’s gleaned since her first diagnosis. Her ultimate hope is to have made a positive impact in others’ lives. “I hope that I’ve shared and experienced moments with people that they remember, and that they’ve used to move forward with something, or to make their lives more valuable,” she says. Through her words, her advocacy, her art and her kindness, Antonini has left paint on a great number of canvases — and the paint is there to stay. LEAP
A LASTING TRIBUTE In the fall of 2017, the Tricia Antonini Award was established as a way to honour Antonini’s years of advocacy and leadership in smoothing the road for cancer patients. Supported by the Alberta Cancer Foundation, the prize recognizes anyone (including patients, families, health-care workers and organizations) who
has gone above and beyond to make a positive difference for bone marrow transplant patients. In Antonini’s words, “[It] is for anyone who has been generous with their paint.” The Tricia Antonini Award is determined via nominations, which can be made by anyone
who has a connection to the Bone Marrow Clinic at the Tom Baker Cancer Centre. Its first recipient was Elaine Moses in November 2017. She was honoured for providing accommodation for more than 100 out-of-town patients and families who require long-term stays in Calgary for their treatment.
PHOTO BY COLIN WAY, COURTESY AVENUE CALGARY
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LIVING WELL
Reducing Anxiety Cancer patients could soon be wearing virtual reality goggles during treatment by LAUREN DENHARTOG
TAKE A DEEP BREATH. NOW, IMAGINE YOU’RE
sitting on a white sand beach under a large umbrella while the hot sun drifts lazily across the sky. Palm trees sway and, as you peer out into the vast ocean in front of you, several tall ships slowly make their way across the horizon. If you’ve ever been on a tropical vacation, this description might trigger memories of your last holiday. But what if, instead of visualizing this image in your mind, you were wearing a pair of virtual reality goggles that did the visualizing for you? A potential initiative is aiming to see if virtual reality (VR) therapy can help take some of the stress out of the chemotherapy experience for cancer patients, allowing them to be instantly transported to dream destinations such as Hawaii or Paris during their treatments. Essentially, patients wearing VR goggles (and headphones) would have images and projections sent directly to their retina/brain pathway, thereby cutting off noise and distractions from the real world. Garth Likes, director of the Alberta Small Business Innovation and Research Initiative (ASBIRI) and former technology development advisor for Alberta Innovates, says the goal of the potential project is to determine if using VR goggles can help relieve the stress of cancer therapy treatments. Likes first heard about VR goggles being used on cancer patients from a YouTube video that covered the concept. After watching the video, he thought, “Why can’t we do this here in Alberta?”
To move forward on the idea of VR goggles for cancer patients, Likes has been helping to connect potential stakeholders who could guide the initiative to fruition. “[Alberta Innovates] is enthusiastic, because [we’re bringing] together private sector companies to play a direct part within the health system,” Likes says.
“ What if, somehow, it enhances the body-mind connection to affect a positive outcome?” –G arth Likes, director of the Alberta Small Business Innovation and Research Initiative
According to Likes, when a person sees something happening in virtual reality, that image triggers the same areas of the brain that are activated when they’re actually seeing things in the real world, and real memories can be created. Right now, there is no direct proof that wearing VR goggles during treatment is going to help cancer patients, beyond bringing them the pleasure of “visiting” a faraway destination. But Likes isn’t one to underestimate the power of VR. “Maybe all that wearing the goggles will do is de-stress a tedious, stressful process you are having to undergo,” he says. “But what if, somehow, it enhances the body-mind connection to affect a positive outcome? Who knows? And this is hopefully where a research project might be born.” LEAP ILLUSTRATION PETE RYAN
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LIVING WELL
Ancient Practice
Group acupuncture could be a beneficial and cost-friendly form of pain treatment for cancer patients by LAUREN DENHARTOG
THE BENEFITS OF ACUPUNCTURE FOR
people suffering from chronic pain have been well-documented. Now, a research study co-funded by the Alberta Cancer Foundation wants to know if acupuncture performed in a group setting works as well as individual treatments for targeting cancer-related pain. Acupuncture is an ancient form of traditional Chinese medicine that utilizes stimulation of acupuncture points to affect the physiology of the body, explains Dr. Jessa Landmann, a Calgary-based naturopathic doctor and co-investigator who is administering acupuncture treatments for the project. According to Landmann, previous studies that analyzed patients’ blood before and after acupuncture treatments have demonstrated some of the benefits of acupuncture therapy. “We know that acupuncture treatment can affect levels of certain neurotransmitters in the body, like serotonin and endorphin levels — things that are basically our own, innate pain-release mechanisms,” Landmann says. What does that mean when it comes to cancer care?
“I think acupuncture is another one of those complementary therapies that has a growing evidence-base showing that it might help treat symptoms that patients have a real hard time with, and often there is no good treatment for,” says Dr. Linda Carlson, who is leading the group acupuncture study. A professor in the Department of Oncology at the University of Calgary, and also the program director of the Integrative Oncology Program at the Tom Baker Cancer Centre, Carlson says that the strongest evidence for the use of acupuncture during cancer care is for treating
pain, nausea, vomiting, fatigue and hot flashes. For this study, which began in October 2017 at the Tom Baker Cancer Centre, participants undergo an initial assessment in which they are asked about their diagnosis, their pain and any contraindications (for example, low platelets). They are then put randomly into one of two treatment groups — individual or group acupuncture — and receive two treatments a week over six weeks, for a total of 12 treatments. All participants are asked about their pain both before and after each treatment (and at the beginning and end of the study), ILLUSTRATION PETE RYAN; PHOTO BRYCE MEYER
36 LEAP SPRING 2018
DR. JESSA LANDMANN (LEFT) AND DR. LINDA CARLSON (RIGHT) ARE INVESTIGATING THE BENEFITS OF GROUP ACUPUNCTURE IN CANCER PATIENTS
and patients must have a minimum level of pain (a 3/10 on a typical pain scale) to participate in the study. While pain reduction is the primary focus, the study, which involves about 50 patients in total, will also assess stress level, fatigue, sleep and anxiety. In the group setting, Landmann uses a larger room to offer treatments to two to six people at the same time. She inserts ultra-thin needles — 0.2 millimetres in diameter — into the first patient’s identified acupuncture points, then moves on to the next patient until everyone in the room is being treated. Landmann says side effects are minimal; patients might feel a tiny poke as each needle is inserted, and some patients may experience some bruising at the site. Needles are typically left in place for 20 to 25 minutes.
The strongest evidence for the use of acupuncture in cancer care is for treating pain, nausea, vomiting, fatigue and hot flashes. Karen Iversen is one of the study participants who was selected for group acupuncture. She says prior to enrolling in the study, she was suffering from neuropathy in her feet, as well as itching in her arms and across her back and neck, a result of the chemotherapy treatment she was receiving for stage 4 breast cancer. In addition to a lack of feeling in her feet, Iversen — an avid walker — was falling down often. Today, she is back to walking five miles a day and credits acupuncture for helping with some of her symptoms. “The study has been hugely beneficial to me,” Iversen says, pointing both to the pain relief the acupuncture has given her, and to the social side of the group experience. “The ladies in my group were a lot of fun, and we could joke. I feel it’s beneficial for the social aspect.”
Landmann believes the group acupuncture setting will reveal a variety of emotional and psychological benefits (beyond pain relief), due to common experiences of the patients involved. “I have observed that patients are really able to share their stories in an environment where people truly understand and can empathize,” Landmann says. “The ability to speak freely among a group of non-judgmental and empathetic people can help with overall well-being. There is a lot of advice-giving, as well.” Another benefit of group acupuncture is its price tag. As both Landmann and Carlson point out, acupuncture delivered in a group
setting can be much more cost-effective for the patient. Individual acupuncture sessions at a private clinic can cost between $90 to $110 per session, while some group acupuncture sessions can cost a patient in the neighbourhood of $40 per session. The study is projected to wrap up in May 2018, and results will be shared in conference presentations, peer-reviewed publications and via social media. Landmann is hopeful results will show that group acupuncture can help reduce pain in cancer patients, and that a permanent group acupuncture program will be established at the Tom Baker Cancer Centre in the future. LEAP myleapmagazine.ca SPRING 2018 LEAP 37
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RESEARCH
ROCKSTAR DR. FRANK WUEST is creating cutting-edge nuclear imaging tools to track and treat cancer at the molecular level by
COLLEEN BIONDI
photography
BLUEFISH STUDIOS
r. Frank Wuest is a selfproclaimed science geek. He studied chemistry during both his undergraduate and master’s degree programs in his homeland of Germany, then pursued radiopharmaceutical sciences for his doctorate. After enjoying a one-and-a-half-year post-doc program in pharmaceutical sciences in St. Louis, Missouri, he was excited to return home to head up the Positron Emission Tomography (PET) Tracer Department at the Research Centre DresdenRossendorf in 2001. Life was good.
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But it was about to change — radically. In 2008, Wuest became aware of an opportunity to move to Edmonton to take on the Dianne and Irving Kipnes Chair in Radiopharmaceutical Sciences at the University of Alberta (U of A) and the Cross Cancer Institute, funded by the Alberta Cancer Foundation. He couldn’t resist applying for the position — what could be better than leading a multidisciplinary team in designing and utilizing highly specialized nuclear imaging tools to enhance the diagnosis and treatment of cancers? He got the job and, for the last 10 years, he and his crew of dedicated graduate students and other team members have been advancing the concept of personalized medicine at the molecular level. “It is about finding the right treatment for the right person at the right time,” Wuest explains. To do this, they design short-term radioactive atoms, which are then attached to molecules. These molecular probes bind to specific biomarkers for cancer. With the probes in place, and using PET imaging, these “metabolic spies” identify and track cancer cells to monitor tumour growth and progression and to assess the response to treatments. Lab work involves creating the labelling technology for the probes, testing their diagnostic and treatment-tracking potential and facilitating Health Canada approval for first-in-human studies. This work is also called “translational cancer research” because it moves quickly from the lab to practical clinical applications, or from “bench to bedside.” Wuest says the time it takes to approve the clinical trial process using these radiopharmaceuticals — which are only applied in tracer doses with no pharmacological or toxicological effect — is rather short compared to traditional drugs (months versus years). “Therefore, we can rapidly ‘translate’ our best findings and innovations into the clinic to enhance patient care,” he says. 40 LEAP SPRING 2018
For example, “an improved synthesis” of a radiotracer for imaging prostate-specific membrane antigen (PSMA) in prostate cancer — designed by Wuest and colleagues from Ontario and British Columbia — is now being used in several centres across Canada. And still in the queue for clinical trials is a fructose-based radiotracer that will be able to track a specific
gists under an umbrella group called the Cancer Research Institute of Northern Alberta (CRINA). In addition, he will soon be taking what he has learned in the lab on the road. Currently in development are portable kits containing small vials of his “secret sauce” chemical mix, which will be sent to other communities so that off-site practitioners can replicate the process and
“ I could not do what I do by myself,” says Wuest. “I feel more like I am part of a rockstar band.”
metabolic pathway in breast cancer. Wuest’s hope is that finely tuned, targeted approaches like this will be advantageous for dealing with many cancers. “Prostate cancer, for example, is one of the most over-diagnosed and over-treated cancers,” he says. “We would like to change that so that the only patients who receive treatment are those who are uniquely suited.” When his lab work is finished for the day, Wuest continues to spread the word about the potential of nuclear diagnostics and treatment tracking by teaching science students at the U of A’s Department of Oncology. He has recently designed a course dealing with applications of new molecular imaging technologies. Wuest is also a master collaborator. Not only does he work with other departments (chemistry and biology, for example) at the university, he also forges relationships with physicians, clinicians and oncolo-
produce their own radiotracers. As a result of his commitment, dedication and robust portfolio, Wuest is widely respected among his peers. His colleague and friend, Dr. Michael Weinfeld, is just one of his many admirers. “Frank’s innovative work on imaging, what is going on inside tumours and how they are responding to treatment, holds a lot of promise,” says Weinfeld. “Frank also has the ability to think outside the box and come up with smart solutions to tricky problems. He’s an extremely valuable team player.” As well as a modest one. “I could not do what I do by myself,” says Wuest. “I feel more like I am part of a rockstar band.” Despite his overflowing work schedule, Wuest makes time for real-world experiences and highlights the importance of balance for any scientist. “I like having time to relax and recharge my batteries,” he says. “The brain needs a rest and some distance in order to get new ideas.” LEAP
7
QUESTIONS WITH
DR. WUEST 1. Describe what you do in 10 words or less. I visualize cancer biology to improve patient care. 2. What’s the biggest misperception about what you do? That I can treat or even cure cancer with our molecular probes. My team and I use the probes for earlier detection and to support the decision-making progress to select the best therapy for the patient. Both early detection and personalized treatment will ultimately improve patient outcome. 3. Where do you get your best ideas? From gossiping with colleagues, friends and students, especially during social events or scientific meetings. 4. If you weren’t a medical oncologist and researcher, what would you be? I always wanted to become an actor. I used to perform in theatre at school and enjoyed performing. 5. What is the hardest lesson you’ve learned? Sometimes your best effort is just not enough. But never give up. 6. What motivates you? Working with students; I like their curiosity and their hunger for new knowledge. And working in a cancer hospital where you see, every day, the importance of your work. 7. Why does your research matter? Only what we can “see” can be treated. My research helps to develop better tools for earlier and more sensitive detection of cancer. The better we can “see,” the better we can treat and help patients.
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TRUE CALLING
NATURALLY CURIOUS Carol Baumgarten, director of cancer care teams for Alberta Health Services, is applying new thinking to old challenges by JULIA WILLIAMS
CAROL BAUMGARTEN’S OFFICE IS IN A
warren of administrative space in Calgary’s Tom Baker Cancer Centre. Here, Baumgarten works as the director of cancer care teams for Alberta Health Services (AHS). On her wall is a small poster that says Keep Calm, We’re the Dream Team. Keeping calm is essential. For more than five years, Baumgarten has overseen all the ambulatory clinics at the Tom Baker Cancer Centre and the Holy Cross Centre, including the Blood Marrow Transplant Clinic. It’s her job to develop the procedures, policies, processes and educational resources that improve patient care. > PHOTOS JARED SYCH
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CAROL BAUMGARTEN TAKES A BUSINESS APPROACH TO DELIVERING THE BEST POSSIBLE PATIENT CARE
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Each day, Baumgarten must address a variety of challenges, including those posed by Calgary’s growing and aging population; demand for health services is increasing, and cancer cases among this population are becoming more complex. Baumgarten must also keep up with innovations in oncology and track gradual shifts in the way that patient care is delivered — all while managing her team and nurturing relations with other departments and units. She describes her days as chaotic, but she’s laughing when she says it. “A typical day is not typical. If you asked anyone in cancer care, that’s what you would find,” she says. Baumgarten began her health care career more than 30 years ago as a central supply aide. She was following in the footsteps of her mother, a trained midwife and emergency nurse. After becoming a registered nurse, Baumgarten worked in different units in Calgary before taking on the role of gynecological oncology coordinator at the Tom Baker Cancer Centre in 2000. This period of her career, which lasted until 2008, was when Baumgarten began to explore the ideas that have shaped her career ever since. As gynecological oncology coordinator, Baumgarten was in charge of organizing everything from surgery times to treatment and palliation — in addition to delivering front-line care. Managing the movement of patients between institutions and clinics so that they could access the care they required was a complex process. “At that time, I realized that in order to deliver the best care possible, we needed more of a systems approach,” Baumgarten says. She decided to gain a greater understanding of how she and her patients fit into the larger institutional structure. Baumgarten credits her team at the Tom Baker Cancer Centre for empowering her to explore new ideas. “I don’t know that I’d be the person I am today if I didn’t have the physician group that I worked with,” Baumgarten says with emotion. “I’m a naturally curious person. They challenged me and they pushed me to be open to questioning, and that’s how I grow and how I learn.” 44 LEAP SPRING 2018
To better understand the organizational and strategic side of health care, Baumgarten enrolled in an MBA program in 2008 through Royal Roads University. On her first day at business school, Baumgarten’s class was asked to do a SWOT analysis (a breakdown of an idea’s Strengths, Weaknesses, Opportunities and Threats). Baumgarten didn’t know how. “I sat there like, ‘What am I doing here?’” she says. “And then I thought, ‘You know what? I do that every day — just differently. I call it a diagnosis differential, but
if you step back it actually looks like this.’” Baumgarten gained confidence as she realized that her nursing experience actually gave her certain advantages in the world of business. Successful management requires soft skills like empathy, communication and the ability to build consensus — skills nurses hone every day. Business school gave Baumgarten a new set of techniques and terms to apply to the challenges she faced daily: negotiation, change management, buy-in. “At the time, it wasn’t language we used in health
care,” she says. “But if you want to open a clinic, start a program, or change a structure or policy, you need [business] skills.” Today, Baumgarten ensures front-line nurses have the opportunity to attend training such as change management and process improvement sessions. She says attendees are usually surprised by how applicable the information is to their roles. Baumgarten moved into the role of assistant unit manager of ambulatory clinics in 2008. When she noticed clerical staff at different clinical sites (the Tom Baker Cancer Centre and the Holy Cross Centre) were unfamiliar with each other’s roles, she applied her business education to the problem. She developed training opportunities and standardized processes, changes that allowed clerks from different tumour sites to cover for each other. These changes also ensured patients would receive the same quality service. Now, as director of cancer care teams, Baumgarten uses the strategic mindset she honed as a business student every day. When patient surveys indicated that two components of cancer care needed improvement — Information Education and Coordination & Emotional Support — Baumgarten wanted to find out why. In 2014 and 2015, she conducted a series of qualitative interviews with the Patient and Family Advisory Network, a team of more
than 80 volunteer members from across Alberta who provide feedback to AHS. Baumgarten says she loved the experience of conducting the interviews and gathering information. Through the conversations, ideas took shape, solutions presented themselves and a bigger picture emerged. The process motivated her to look at delivering care in a different way.
“ When you’re feeling your most supported, whatever that means to you, that’s when you can develop the most.” – Carol Baumgarten
“It involves a shift in thinking, from reactive to proactive,” she says. Baumgarten’s team has changed the way patients check in at outpatient reception, but Baumgarten says there is more work to do. “We’re going to get there — it’s just going to take some time.” Baumgarten considers all her achievements to be team efforts. To her, building a sense of community, trust and support among colleagues is not just desirable,
GROWING A LEADER Carol Baumgarten, who spent 30 years working in health care and oncology before becoming director of cancer care teams, is described by colleagues as a “grown leader” rather than an “inserted leader.” Certain phases of her career have helped her grow, shaping the values and strategies she applies to her current role. CAREER PHASE: PRIMARY GYNECOLOGICAL ONCOLOGY NURSE, 2000 – 2008 Value learned: Take care of your team “ That unit was a family. There was an appreciation for each other. They say that trust is the foundation of any team, and when you have that it’s magic.”
CAREER PHASE: ASSISTANT UNIT MANAGER AMBULATORY CLINICS, 2008 – 2011 Value learned: Adopt a systems approach and a strategic mindset “ Any good clinical idea needs good organizational management. It was an empowering shift from ‘I wish’ to ‘I can.’”
CAREER PHASE: OPERATION SUPPORT LEAD, 2011 – 2012 Value learned: Apply business principles “ I don’t know how much more effective I could have been if I didn’t do something to further my understanding of business processes.”
CAREER PHASE: DIRECTOR, CANCER CARE TEAMS, 2012 – TODAY Value learned: Never stop learning “ Oncology has been a fertile ground to learn and grow. This specialty leaves an imprint on those of us who live and breathe it. My curiosity is piqued every day, which is what I love.”
it’s essential. “You cannot talk about patient experience without staff experience,” Baumgarten says. “When you’re feeling your most supported, whatever that means to you, that’s when you can develop the most.” Carole Chambers, the provincial director of cancer services, pharmacy, for AHS, is a long-time co-worker and collaborator of Baumgarten’s. She describes Baumgarten as a great listener — someone who is capable of breaking down the silos that tend to separate health care teams. Chambers says she recently found an appreciative note from Baumgarten stuck to her office door. “It made my day,” Chambers says. “You’re way better situated to find solutions to tough issues if you’re dealing with positive people.” Chambers and Baumgarten recently worked together on a multidisciplinary pharmacy-oncology initiative. Now, when a patient visits a cancer care clinic for the first time, all medications and substances they’re taking are documented. This improves patient safety by preventing unexpected drug interactions. Chambers says taking a cooperative approach was the most effective way to make this change. “To have the ability to sit down and speak with mutual respect on tough topics is a rare thing, and that’s why I value it so much,” Chambers says. “I think [Baumgarten] is amazing.” Baumgarten has long since finished her MBA, but her education has continued. At the end of 2017 she submitted her draft thesis to the University of Liverpool for a Doctorate of Business Administration. She’ll spend 2018 working on edits and doing a verbal thesis defense. If all goes to plan, she’ll graduate this December. Her studies occupy most of her spare time — that and watching her two sons (aged 13 and 14) play hockey and baseball. When Baumgarten finishes her degree, she jokes that she hopes to actually develop some hobbies of her own. For now, she’s happy to keep pursuing big ideas and solving health-care problems. “You know sometimes when you just find your place? That’s what this place is,” she says. LEAP myleapmagazine.ca SPRING 2018 LEAP 45
IMPACT
DANIELLE CHADWICK UNDERWENT TREATMENT FOR OCULAR MELANOMA
“I was 30 when I was diagnosed. I got a call from Dr. Weis on Dec. 21, 2016, saying it was melanoma. I was completely symptom-free, so it was a shock. “Dr. Weis told me that treatment was my decision, but without it, the cancer would grow. He said there was no benefit to enucleation [the removal of an eye] over radiation therapy, which would at least leave me with an eye.
“ It’s been such a relief to have this treatment available here for us as Albertans.” – Danielle Chadwick
Brachytherapy: A Personal Experience as told to JENNIFER DOROZIO
Danielle Chadwick, a mother of two, was planning to try for another baby with her husband when, at a routine eye appointment, her optometrist discovered a troubling freckle on her eye.
Six months later, at a follow-up exam, Chadwick learned the freckle had grown. After a series of tests and doctor visits, it was determined she had ocular melanoma in her left eye. Family planning was put on hold, as she, instead, went about deciding on cancer treatment. With the guidance of Dr. Ezekiel Weis, who specializes in oculoplastics, orbit and ocular oncology at the Cross Cancer Institute in Edmonton, she chose to undergo brachytherapy treatment, which was fully funded by the Alberta Cancer Foundation. After responding extremely well to treatment, Chadwick is now cancer-free, and she and her husband are happily expecting their third child in June. Here, she shares her experience.
“I chose brachytherapy radiation. With the [initial] surgery, they cut your eye away from the eye socket and roll it out and sew a radioactive disk to the back of the eye. Then they put the eye back and leave the disk in for about five days. After that, Dr. Weis removed the disk and did reconstructive surgery on the socket to make the eye look normal again. It was one week in total. “Initially, I had a small blind spot right by my nose, and more recently, my tumour actually hemorrhaged, and now it’s draining fluid onto my macula so my whole central vision is gone now in that eye. “At my checkup in June 2016, Dr. Weis told me it looked like the tumour was responding to the radiation, and at my checkup in September, he said he considered the tumour dead. “I felt a lot of relief. There’s still a risk, so I have to go for a scan yearly and checkups every three months. “At my three-month checkup was when Dr. Weis gave me the okay to go ahead to try for another baby. Not being able to have another child was one of my largest anxieties of having cancer at my age. So, after finding out I was pregnant, I was almost in disbelief, it felt like such a blessing. “It’s been such a relief to have this treatment available here for us as Albertans. I look forward to knowing my family is complete and not worrying about my health or my cancer being in the way. I really have had a great team of caregivers, everyone at the Cross Cancer Institute took great care of me, which really helped.” LEAP PHOTO JAYME FORD
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WHY I DONATE
Rural Roots by MAE KROEIS
Bob and Gina Church are helping families across Alberta through their commitment to the Patient Financial Assistance Program > PHOTO JARED SYCH
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MYKA OSINCHUK (LEFT) IS THE FORMER CEO OF THE ALBERTA CANCER FOUNDATION AND A SOURCE OF INSPIRATION FOR BOB AND GINA CHURCH
AS OWNERS AND OPERATORS OF LOCHEND
Luing Ranch (located in the foothills northwest of Calgary and established in 1974), Dr. Bob Church and his wife, Gina, have long been committed to helping young families in Alberta’s rural communities. One of the many ways this help takes form is through the couple’s annual donation to the Alberta Cancer Foundation’s Patient Financial Assistance Program. Over the years, Bob and Gina have heard many stories of rural families who are struck by cancer and are struggling to access care or to make ends meet. “We see the Patient Financial Assistance Program as an effective way to help these young families, and to relieve some of the financial pressures so they can concentrate on getting better and not stress over how to pay the bills,” says Gina, whose rural roots reach back to her grandparents’ farm in Balzac., Alta. Bob himself grew up on a farm in Balzac, too, and he credits his early membership in the 4-H Alberta Club as a major influence in his lifelong philanthropic efforts. “Being a 4-H member in the 1950s set me up for a lifetime goal of helping others,” he says, adding that his enduring commitment to the 4-H pledge — my head to clear thinking, my heart to greater loyalty, my hands to larger service, my health to better living for my club, community and my world — continues to guide him to this day. Considered a pioneer of molecular genetics and embryo transfer technology in cattle, Bob is now a professor emeritus of the Faculty of Medicine at the University of Calgary and has enjoyed a locally and internationally distinguished career in agriculture, medicine, biotechnology and cancer research. In fact, in addition to serving on boards and committees for a variety of provincial and national 48 LEAP SPRING 2018
initiatives, he played a key role in helping to establish the Alberta Cancer Foundation in the early 1980s. At the time, he was an advisor to the Government of Alberta on health care and was motivated by the desire to ensure all Albertans had timely access to cancer care. Bob has always believed in the dedication of Albertans when it comes to creating opportunities for the future. “The reason we helped set up the [Alberta Cancer Foundation] was that we knew Albertans were very generous people, and we also knew that we could not always count on the powers-that-be in the government to be able to pay all the costs [related to cancer].” Like so many others, Bob and Gina have their own personal connections to cancer — each has lost a parent to the disease. For Gina, giving to the Alberta Cancer Foundation helps to honour her mother’s memory.
“My mother had signed her donor card early in life, but couldn’t be a donor due to her cancer,” Gina says. “This is a way for me to honour her wish to help others.” The Churches’ most recent donation to the Patient Financial Assistance Program was also made in recognition of Myka Osinchuk, CEO of the Alberta Cancer Foundation from 2011–2017, who happens to have rural roots as well. “We strongly admire the work Myka has done, and her sincerity, compassion and commitment to the Foundation,” says Gina. “[Myka] led the charge in getting record-setting contributions from across the province,” adds Bob, who feels that her efforts, and the Patient Financial Assistance Program, both “make a significant difference in Albertans’ lives.” LEAP Learn more about how you can support the Alberta Cancer Foundation Patient Financial Assistance Program at albertacancer.ca.
MY LEAP
Rowing Solo Extreme adventurer Laval St. Germain embarked on a daring journey to raise funds for cancer research by JENNIFER FRIESEN
OVER THE YEARS, CALGARY-BASED AIRLINE PILOT AND ENDURANCE
adventurer Laval St. Germain has spent a great deal of time away from home. When he isn’t flying airplanes for a living, he’s often off running ultra-marathons, climbing some of the world’s tallest mountains or cycling great distances in the Arctic. But on one evening in January 2016, St. Germain found himself in town, visiting a good friend at the Foothills Hospital. For more than 15 years, Korey Hazelwood had worked as an airline captain alongside St. Germain, but he’d spent the last year dealing with a persistent cough, a number of misdiagnoses and a lot of questions. He would soon learn he had lung cancer. As St. Germain sat with his friend that night, an idea began to take form. For months, he had been planning his latest extreme adventure: rowing a tiny boat across the Atlantic Ocean. In support of Hazelwood, he would turn his personal adventure into the Confront Cancer Ocean Row, a fundraising effort in support of the Alberta Cancer Foundation. “Imagine that I led you by the hand to a dock on a cold morning and I put you on a boat,” says St. Germain. “You’d ask, ‘What are you doing?’ and I’d shove you off and say, ‘You’re gonna row this thing, here are your oars — head east.’ I thought to myself that a patient going into a doctor’s office and getting a cancer diagnosis would feel a lot like that.”
In June 2016, St. Germain boarded his specially designed 20-foot rowboat at a Halifax dock and set off on the more than 5,000-kilometre journey to France. Armed with ample supplies and a hot Tim Hortons’ coffee, he still wasn’t sure he was ready. “You have this bit a dread knowing that you’re about to do something that’s fairly dangerous,” he says. “But I was able to temper that, telling myself that I’m going to row the ocean, I’m not going for chemo. This could be a lot worse.” In the following days, St. Germain confronted all kinds of highs and lows on the sea, from being tossed violently on the waves during seemingly endless storms, to watching a fleet of dolphins dance around his tiny vessel. He stayed in contact with friends and family, including Hazelwood, through a satellite phone, but largely went through the experience alone. After all the solo triumphs and struggles at sea, he rowed into the dock in Brest, France, a record-breaking 53 days from when he’d first set off. He’d planned for the journey to take 100 days, but a generous current had helped to narrow the time frame. Met by his wife, and facing days of shaky legs, his epic journey was complete — and he raised more than $60,000 for cancer research. St. Germain says he’d hoped to raise more, but he intends to continue pushing his body and spirit to support important causes. He’s currently planning on teaming up with the Alberta Cancer Foundation for another fundraising expedition in early 2019. It’s been two years since St. Germain sat in that hospital room with Hazelwood, who is currently responding positively to treatment. But St. Germain knows there isn’t always a happy ending. He has recently lost another fellow pilot, as well as his father-in-law, to the disease. “I just want to somehow help,” he says. “Having my friends and family go through cancer was an inspiration for me, and I hope this inspires people to challenge themselves, too.” LEAP
BY THE NUMBERS LAVAL ST. GERMAIN’S CONFRONT CANCER OCEAN ROW 5,000 Number of kilometres travelled. 53 Days it took to complete the trek from Halifax to Brest, France.
60,000 Dollars raised for the Alberta Cancer Foundation.
20 X 5 The length and width (in feet) of St. Germain’s custom-built boat.
26 Kilometres per hour was the fastest speed he reached during his row.
9 Number of months it took to train and prepare for the journey.
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GAME CHANGER
RAY YUE, CO-FOUNDER OF EDMONTON CLINIC FEMME HOMME MEDICAL
Raising Funds for Lungs Edmonton clinic Femme Homme Medical has been a vital supporter of lung cancer research by JENNIFER FRIESEN
AT EDMONTON-BASED PRIVATE CLINIC FEMME HOMME MEDICAL,
patients are encouraged to take an active approach to their health. Co-founders Ray Yue and Aileen Huynh, a pharmacist and business operator, respectively, opened their clinic doors three years ago with the aim of offering preventive health care and helping patients address their well-being early on. “As health-care professionals, we’re always trying to look for ways to make a larger impact,” says Yue. “We want to increase health education and scale that impact up.” Last fall, Femme Homme Medical teamed up with the Alberta Cancer Foundation for a matching fundraiser campaign in support of research into lung cancer screening. The clinic donated a portion of its proceeds to the cause, and challenged local businesses in its network to match its donation amount. In a matter of months, Yue and Huynh raised more than $67,800 and helped the Foundation acquire more than 1,000 new donors. Yue says health care is often reactive in nature, so he was happy to focus on a fundraising effort that supports a proactive approach. “People feel sick and they wait until it gets worse,” he says. “Some things creep up on us unknowingly, and cancer is unfortunately
one of those things. [This campaign] resonated because we have patients who come to our clinic [when their cancer is already] advanced. It’s very important that we do anything that we can do to save a life, or catch something earlier.” For every 20 patients diagnosed with lung cancer in Canada, only four are expected to survive. But, according to a recent international study, one in five lung cancer deaths can be prevented by screening. Researchers at the University of Calgary have spent the last year screening Albertans at risk of lung cancer with the aim of researching who needs screening and when. The end goal is to launch the first province-wide lung cancer screening program in Canada. This was the goal that resonated with Yue and Huynh and their team of physicians at Femme Homme Medical. “I think the public needs to know and understand at what point of their lives they need to screen for certain cancers and diseases,” says Huynh. “And that they shouldn’t just skip it.” Yue adds that the fundraising efforts at Femme Homme Medical for this initiative were so successful because his patients and fellow health-care professionals were able to see quite clearly what a lung screening program would mean to everyone facing the disease. “[Raising the funds was] hugely rewarding,” says Yue. “It’s something that we want to continue to do, because, at the end of the day, it’s so important to educate people on preventive health screening.”
“ We want to increase health education and scale that impact up.” – Ray Yue, Femme Homme Medical
With Femme Homme Medical’s preventive approach, clinicians make personalized plans with patients to alter their lifestyle in an effort to improve their health — be it through nutrition, fitness or mental wellness. “Health isn’t one thing, it’s overall,” says Huynh, adding that everyone is different and the clinic provides services that include genetic screening and heart tests looking for biological risk markers. “Having the lung cancer screening available to the public is really needed,” adds Huynh. “In the long run, it will save so many lives. That’s why we started a clinic like this, and that’s why we supported this project.” LEAP PHOTOGRAPHY COOPER & O’HARA
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