LEAP Fall 2017

5 WAYS Your DONATION Makes a Difference

BEET THIS! A new take on fall produce

4 TIPS for a Successful

FUNDRAISER

WALK OF LIFE

FALL 2017

SARA ANDERSON TREKS THE SCOTTISH HIGHLANDS FOR A CAUSE

EXPERT ADVICE

DEMYSTIFYING CLINICAL TRIALS AND LEGACY GIVING

THE

INNOVATION ISSUE

PARTNERS IN HEALTH Patient navigator Jodie Jespersen helps young adults like Rickie-Lee Hildebrand map their route to health

CONTENTS 38 RESEARCH ROCKSTAR Oncologist Dr. John Walker treats patients with head and neck cancers and finds new possibilities for treatment by leading investigator-initiated clinical trials.

42 TRUE CALLING Nancy Guebert, chief program officer for Cancer Control Alberta, sees each patient with cancer as a unique individual on a personal journey.

46 IMPACT Patient Daryl Johnson shares his personal success story with a clinical trial.

FEATURES

20 THE INNOVATION ISSUE

Cancer care, from diagnosis to treatment and prevention to support, is continuing to evolve in Alberta.

We check in with some of the exciting new programs and innovative people making a difference today.

COLUMNS/DEPARTMENTS 7 FRONT LINE Nurse practitioner Catriona Leckie’s study explores the benefits of early-palliative conversations, Alberta welcomes its first cancer physiatrist, how medical data can benefit patients and more.

13 YOUR DONATION MATTERS Five ways your donations to the Alberta Cancer Foundation make a difference for patients undergoing treatment.

14 FOOD FOCUS Creative ways to cook local in the fall and we explain common myths about eating and cancer prevention.

16 WORKOUT Everything you need to know about obstacle course races and tips to deal with cancer-related fatigue.

33 CARING The Alberta Cancer Foundation’s Patient Partnership Strategy asks patients what they want in cancer research.

18 EXPERT ADVICE Our experts weigh in on how to find a clinical trial in Alberta and the best way to donate to charity in your will.

34 LIVING WELL The Oncology and Sexuality, Intimacy and Survivorship Program helps couples reconnect and Calgary’s Compassionate Beauty is a boutique designed for women in treatment.

47 WHY I DONATE Sara Anderson is hiking the Scottish Highlands to honour her resilient grandfather.

49 MY LEAP Ten-year-old Cadence Colborn, top fundraiser at the 2017 Ringette Scores on Cancer event, is happy to give back.

50 GAME CHANGER Calgary-based energy company Enbridge has helped raised millions of dollars for the Alberta Cancer Foundation.

COVER PHOTO: COOPER & O’HARA ILLUSTRATION PETE RYAN

myleapmagazine.ca FALL 2017 LEAP 3

MESSAGE

Welcome Back!

TRUSTEES

Thomas Hodson, Chair Christopher Burrows, Vice Chair Angela Boehm Gary Bugeaud Jordan Hokanson Dr. Sandip Lalli Katie McLean Andrea McManus Matthew Parliament, Ex-Officio Leigh-Anne Palter Gelaine Pearman Sandy Slator Greg Tisdale Rory J. Tyler

Leap magazine has been on a brief hiatus while we worked on a new look, but we’re back with the same goal of sharing compelling stories about generous Albertans making an impact across the province. We are honoured to hear these individual stories every day at the Alberta Cancer Foundation, and when we see them compiled in Leap magazine, we are also reminded by the breadth and depth of progress taking place across this province, much of it made possible by donor support.

For instance, you’ll read about the OASIS program, designed to provide Albertans support for the sexual health changes that can accompany a cancer diagnosis and treatment. Healthcare teams often hear questions about how treatment affects sexual dysfunction or fertility and this program, supported in part by our donors, addresses those issues. We also feature “Research Rockstar”, Dr. John Walker — yes, Johnnie Walker — an oncologist at the Cross Cancer Institute who is using investigator-initiated clinical trials to find the best treatment options for his patients We’re happy to with the fewest side effects. These trials, funded by the be back and hope Alberta Cancer Foundation, are a creative and cost-effective you enjoy Leap’s way for researchers to test their good ideas. We have some of the brightest minds studying cancer in this province. return as much as These trials offer them a way to answer important queswe do. tions that will, and already have, led to the discovery of innovative, safe and effective cancer treatments.

In our regular column “Top Job” we profile our partners in Alberta Health Services and the excellent work taking place across this province. In this issue of Leap, we go right to the top of CancerControl Alberta and learn more about Nancy Guebert, the new chief program officer.

Nancy brings a strong patient focus and background in health-care management and as you get to know her a little bit in Leap, you will see this province’s cancer program is in great hands.

We can attest to that.

You’ll also read about 10-year-old Cadence Colborn, who proves it’s never too young to be a philanthropist. This determined girl from Saskatoon was part of the legendary Ringette Scores on Cancer tournament benefitting the Alberta Cancer Foundation and when she set her mind to raising money for us before travelling from Saskatchewan to play, she wound up as the top fundraiser for the entire tournament by being creative and asking friends and family to donate.

We could all learn a thing from young Cadence.

We’re happy to be back and hope you enjoy Leap’s return as much as we do.

MYKA OSINCHUK, CEO ALBERTA CANCER FOUNDATION

4 LEAP FALL 2017

THOMAS HODSON, CHAIR ALBERTA CANCER FOUNDATION

FALL 2017

|

VOL. 3

|

NO. 7

ALBERTA CANCER FOUNDATION EDITORS

Phoebe Dey and Christiane Gauthier

MANAGING EDITOR Meredith Bailey ART DIRECTOR Kim Larson COPY EDITOR Jay Winans STAFF PHOTOGRAPHER Jared Sych CONTRIBUTORS Andrew Benson, Elizabeth Chorney-Booth, Colleen Biondi, Brian Buchsdruecker, Shannon Cleary, Lauren Denhartog, John Gaucher, Andrew Guilbert, Kaitlyn Hanson, Andrew Jeffrey, Mae Kroeis, Jennifer Madole, Julie McLaughlin, Vicki Nerino, Cooper & O’Hara, Karin Olafson, Aaron Pederson, Pete Ryan, Lynda Sea, Paul Swanson, Julia Williams, Sean P. Young PUBLISHED FOR

Alberta Cancer Foundation Calgary office Suite 300, 1620 29 St. N.W. Calgary, Alberta T2N 4L7

PROVINCIAL OFFICE

710, 10123 99 St. N.W. Edmonton, Alberta T5J 3H1 Tel: 780-643-4400 Toll free: 1-866-412-4222 acfonline@albertacancer.ca

PUBLISHED BY

Redpoint Media & Marketing Solutions 100, 1900 11 St. S.E. Calgary, Alberta T2G 3G2 Phone: 403-240-9055 Toll free: 1-877-963-9333 Fax: 403-240-9059 info@redpointmedia.ca Return undeliverable Canadian addresses to address above.

PRESIDENT & CEO Pete Graves PUBLISHER Joyce Byrne ASSOCIATE PUBLISHER Pritha Kalar CLIENT RELATIONS MANAGER Sandra Jenks PRODUCTION MANAGER Mike Matovich AUDIENCE DEVELOPMENT MANAGER Rob Kelly

myleapmagazine.ca FALL 2017 LEAP 5

THANK YOU WORLD’S LONGEST HOCKEY GAME This February, the World’s Longest Hockey Game is back! For 10 days, 40 players will challenge the Guinness World Record to achieve the rights as the titleholders of The World’s Longest Hockey Game to raise funds for the Alberta Cancer Foundation.

Since 2003, the World’s Longest Hockey Game has raised more than $2.1 million to pioneer revolutionary projects in support of patients at Alberta’s own Cross Cancer Institute and beyond.

albertacancer.ca/WLHG

FRONT BRIGHT MINDS | MEDICAL DATA | FUNDRAISERS | CANCER BY-THE-NUMBERS

BRIGHT MINDS

Nurse practitioner Catriona Leckie believes talking about palliative care at the start of treatment has a positive impact on a patient’s well-being

C

atriona Leckie, a nurse practitioner in neuro-oncology at the Tom Baker Cancer Centre, has seen hundreds of people dealing with brain cancer and knows all too well how draining the experience can be.

“When you get radiation and chemo together, that’s the hardest part of the treatment,” she says. “It can be a debilitating fatigue.” Her experience with the difficulties of living with cancer isn’t just limited to her work, as she helped take care of her father when he developed prostate cancer 20 years ago. That experience increased her interest in quality of life for cancer patients, and how to improve their mental state in particular. “I had a lot of questions regarding anxiety in a cancer diagnosis, what information patients need to reduce anxieties and how do you move on knowing you have cancer,” she says. “[I wanted] to reduce anxiety associated with a cancer diagnosis, which could be part of me trying to figure out my father’s experience.” >

CATRIONA LECKIE, NURSE PRACTITIONER IN NEURO-ONCOLOGY AT THE TOM BAKER CANCER CENTRE

PHOTOGRAPHY JOHN GAUCHER

myleapmagazine.ca FALL 2017 LEAP 7

FRONT LINE In an effort to reduce the anxiety and depression that often accompany cancer care, Leckie is conducting a study on the benefits of early palliative care conversations on patient well-being. Palliative care discussions, the process of talking to patients about what resources and options they have in terms of quality of life and end-of-life care, typically occur once all avenues of treatment have been exhausted and aim to help patients cope with terminal illness.

Leckie’s new approach introduces patients to care workers in community resources, rehabilitation and home care early on so they feel less like

“ [Early palliative conversations] don’t remove hope, they actually instill hope, because patients have a little more control of their decisionmaking.”

– Catriona Leckie, nurse practitioner

strangers should patients eventually opt for their services. These early conversations also help patients identify goals and values they want to pursue, including everything from when they wouldn’t want to be resuscitated to the effects of surgeries and treatments. Leckie believes having these

AT A GLANCE

conversations early and throughout a person’s cancer treatment will help alleviate a number of problems, for patients and caregivers. Patients would benefit from greater knowledge of their options, as well as peace of mind, and medical staff will have an easier time broaching what can be difficult subject matter. “This whole process has actually improved the conversations we have as health-care providers. Ongoing conversations are much easier now,” says Leckie.

“Before we started, the main complaint was that these conversations remove hope. [Early palliative conversations] don’t remove hope, they actually instill hope, because patients have a little more control of their decision-making.”

Leckie believes having the tough conversations at the start of treatment will lower levels of anxiety and depression, as reported on the Edmonton Symptom Assessment Score (ESAS), a ratings system by which patients indicate on a 10-point scale how they feel in 10 different areas, including depression, anxiety, pain, tiredness and nausea.

“Hopefully, the benefit will be that their anxiety scores and depression scores will be lower, and they will have goals set for end of life, where they want to be and that we’re meeting some of these goals that they potentially have discussed. I’m hoping that will be a benefit to the system as well.” LEAP — ANDREW GUILBERT

Leckie’s study follows 140 glioblastoma patients, 70 from 2011, before her initiative started, and 70 from 2015, after the implementation of the early palliative care conversations. By reviewing their experiences for 30 months from the start of their respective treatments, she is hoping to see improvements in self-reported levels of anxiety and depression in the 2015 patients who participated in her earlier palliative conversation clinic. Leckie expects her study to be concluded in 2019.

8 LEAP FALL 2017

Opening Doors to Care Extended hours at two of Alberta’s Cancer Centres mean patients have better access to care STARTING IN OCTOBER 2016, EDMONTON’S

Cross Cancer Institute extended medical oncology services from five to six days each week, with radiation oncology hours extending another hour from Monday to Friday. In January 2017, Calgary’s Tom Baker Cancer Centre opened the doors to its Blood and Marrow Transplant Clinic on weekends and extended its weekday hours.

Extended hours allow more patients to access care in an outpatient setting and the extra time has already made a difference. As reported in March of this year, the province has seen an overall increase of 3.7 per cent in all cancer treatments in Alberta — radiation therapy treatments specifically have increased by 5.6 per cent. There has also been a decrease in average radiation therapy ready to treat wait times, down to 2.7 weeks, which is close to the province’s target of 2.6. LEAP — ANDREW JEFFREY

NEW HOURS The Tom Baker Cancer Centre’s Blood and Marrow Transplant Clinic is open seven days a week, including from 8 a.m. to 4:30 p.m. on weekends, and radiation therapy is now available a half hour earlier and later, open from 7:30 a.m. to 6 p.m. on weekdays.

Medical oncology services at the Cross Cancer Institute are open from Monday to Saturday, including long weekends.

ALBERTA HEALTH SERVICES 2017 REPORT ON CANCER BY-THE-NUMBERS

19,865 THE NUMBER OF NEW CANCER CASES EXPECTED IN 2017

6,653

THE NUMBER OF EXPECTED CANCER DEATHS IN 2017

1 IN 2 ALBERTANS WILL DEVELOP CANCER IN THEIR LIFETIMES

52%

of all cancers are made up of breast, lung, prostate and colorectal

80%

THE PERCENTAGE OF ALBERTA BREAST CANCER CASES THAT WERE DIAGNOSED IN STAGE I OR II BETWEEN 2013 AND 2014

25% OF ALL DEATHS IN ALBERTA IN 2014 WERE BECAUSE OF CANCER

1 IN 13 AND 1 IN 16 the number of Albertan men and women, respectively, who will develop colorectal cancer in their lifetime

61% 99%

THE PERCENTAGE OF LUNG CANCER PATIENTS DIAGNOSED IN STAGE I WHO HAVE SURGERY ONLY

the five year survival rate for prostate cancer patients diagnosed in stage I or II

FIVE-YEAR SURVIVAL RATE FOR ALBERTAN FEMALE BREAST CANCER PATIENTS RECORDED BETWEEN 2012 AND 2014

90%

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FRONT LINE

FUNDRAISERS

PARTICIPANTS FROM COLOR ME RAD CALGARY. LEARN MORE ON PAGE 16

How to Throw an Alberta Cancer Foundation Fundraiser Every year the Alberta Cancer Foundation benefits from 300 to 400 fundraising events, from bake sales to major running races, hosted by different individuals or organizations inspired to give back. Nana Thaver, development officer at the Alberta Cancer Foundation, recommends people interested in throwing a fundraiser of their own follow these steps to ensure efficiency and success. — ELIZABETH CHORNEY-BOOTH PHOTO COURTESY OF ALBERTA CANCER FOUNDATION

10 LEAP FALL 2017

1.

CONTACT THE ALBERTA CANCER FOUNDATION IN ADVANCE.

2.

3.

4.

FIGURE SPREAD CELEBRATE! the OUT HOW THE WORD. Acknowledge event’s success by to tradition- co-ordinating a cheque TO COLLECT Inal addition means such as presentation at one posters, Thaver says of the 17 Alberta THE organizers should capi- Health Services cancer talize on social media, centres that partner MONEY. If an organization is doing something where pledges are collected to raise funds, such as a dance-athon, the Foundation can cut the cash out of the equation. It can set participants up with online pledge sheets that funnel donations directly to the Foundation.

Let the Foundation know what you’re planning. Event logistics and planning is up to the organizers, but the Foundation can provide support materials, including pledge forms, templates for silent auctions and access to cancer awareness videos.

not only to spread the word about what the fundraiser is about but also why they’re choosing to do it. This is where personal stories about cancer come in. “It’s really important to connect your donors and your audience with your personal story and why you’re inspired to do this,” Thaver says.

with the Alberta Cancer Foundation.

Even if organizers collected donations via online forms, it’s morale-boosting for participants to meet with the Foundation and celebrate what they’ve accomplished.

“We love people to be able to come in and officially pass on those proceeds,” Thaver says. “Especially if they’re directing the money to that specific cancer centre.”

FUNDRAISING SUCCESSES

It helps to get creative when planning an Alberta Cancer Foundation fundraiser.

Here’s a handful of grassroots fundraisers that saw significant success.

1.

WILDE BOCCE: A BOCCE BALL TOURNAMENT hosted for friends and family, organized by Ashley Bodnarchuk and family since 2014, has raised $25,000+.

2.

MAGICAL MOMS COMEDY NIGHT:

a stand up comedy show with silent auction, organized

by Shelly Neal and friends since 2015, has raised $29,000.

3.

SPRUCE GROVE COMPOSITE HIGH SCHOOL RIDE FOR LIFE BIKE-A-THON:

a 12-hour bike-athon, organized by the staff and students, has raised $120,000 since 2015.

4.

24-HOUR GIG-A-THON:

a two-hour concert with various bands, organized

by Edmonton band The Dungarees, has raised $15,000.

5.

ST. ANTHONY SCHOOL SHAVE TO SAVE:

a bi-annual school head shave, organized

by Kerrie-Ann Lemermeyer since 2009, has raised $60,000.

Cancer rehabilitation specialist brings expertise to Calgary THE FIRST CANCER physiatrist in Western Canada, Dr. George Francis, brings a little-known specialty to Alberta Health Services. Physiatry, otherwise known as physical medicine and rehabilitation, examines and treats problems in patients’ functional ability and mobility, restoring impairment problems in a variety of body systems.

Many physiatrists treat cancer patients when they have specific issues, such as stiff shoulders resulting from mastectomy, but they often aren’t dedicated to long-term treatment of cancer patients.

With a sub-specialty in cancer rehabilitation, Francis gives Albertan patients the specialized cancer rehabilitation care currently not available.

“There are many rehabilitation services and people available in Alberta doing great work,” Francis says.

“However, much focus is on cancer treatment, and afterwards patients may be left with functional issues, pain or limited strength and mobility that were not initially recognized, and they may not have access to the resources that are available.”

Under Francis’s care, patients benefit from earlier identification and treatment of rehabilitation issues potentially stemming from the cancer itself or treatment plans.

Rehabilitation improves cancer patients’ abilities to perform daily tasks throughout cancer care. Cancer rehabilitation programs in other centres have resulted in shorter lengths of stay for patients, improved abilities to exercise and improved quality of life. LEAP — ANDREW JEFFREY

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FRONT LINE

Alberta’s Next Big Thing: Medical Data A collaborative approach to medical data gives industry the tools to provide better care for patients ALBERTA IS SITTING ON A

true 21st-century resource that is ripe for exploration, but it’s not clean tech or rare earth minerals — it’s medical data.

“In the way we mined coal in the past and now we mine oil … we should be mining medical data,” says Mel Wong, CEO of BioAlberta, the province’s leading life sciences industry group.

Medical data is essentially records of a person’s health and the treatments they’ve received. Currently, only medical research teams working out of or affiliated with universities can access it, and that access varies on a case-by-case basis.

Bioscience and pharmaceutical giants also want access to this public and private patient data to develop better treatments

and analytics tools. And for Albertans living with cancer, this comprehensive approach to understanding data offers a more complete picture of a patient’s medical journey and better helps medical professionals conducting research view patients as a whole and not just a single diagnosis.

Wong says Alberta has all the key factors for rich medical data: a single-payer system, population in the millions and a willingness from government and medical researchers to see anonymized medical data made available to private industry. The anonymization process, either encrypting or removing personal information from data sets, is done by bulkcollecting software programs and ensures privacy protection. This “living lab” can be very useful. For example, if a pharmaceutical company wanted information on the effectiveness of a specific medication, it could access a massive pool of precise, “real world” data that include the history and experience of thousands of people.

This access to information makes Alberta an attractive place to conduct research, which is very good for patients, says Theresa Radwell, vice president program investment, Alberta Cancer Foundation.

“Pharmaceutical companies can use this ‘live lab’ data to

create a laboratory scenario and run targeted or focused trials in the province. Alberta will be seen as even more attractive to industry partners who want to conduct research improving outcomes for patients,” Radwell says. “For Alberta patients, this means greater access to trials and therefore the latest and newest treatments.”

The biosciences industry is clamouring for the data to develop the next wave of medical analytics tools.

These technological advances will help usher in a new age in precision medicine, with patients being the ultimate benefactors. “We’d be able to improve the overall health and well-being of Albertans,” Wong says. “We’d be able to look at what’s worked, what hasn’t and what’s worked better than other approaches in terms of personal health-care programs, in drugs and prescription programs.” BioAlberta’s vision of making Alberta an international hub of medical data could also be a huge economic play for the province, Wong says.

“I don’t know of a jurisdiction yet that has gone far enough to make this vision happen, and I think we have the opportunity to do that,” he says. “Someone is going to do it and it might as well be Alberta.” LEAP — SEAN P. YOUNG

Access to anonymized medical data means a pharmaceutical company can plug in specific factors for cross-referencing information, for example where a patient lives, family history and what other medications they may be taking. This incredibly specific information will result in a clearer understanding of the type of treatments that are working and for whom.

ILLUSTRATION VICKI NERINO

12 LEAP FALL 2017

5 WAYS

Your donation to the Alberta Cancer Foundation makes a difference for patients undergoing treatment Enhancing the lives of patients and their families is at the core of everything the Alberta Cancer Foundation does. With the help of donors, the Foundation has been able to build the following enhancements into existing Alberta Health Services infrastructure to ease the cancer journey for patients across the province.

Enhanced waiting room spaces

Blanket warmers

Blanket warmers offer comfort and warmth during treatment.

Enhanced waiting room spaces provide patients and their family members with comfortable seating and a calming atmosphere.

Refreshment stations

Cancer centres are equipped with stocked refreshment stations or refreshment carts for patients’ convenience.

Comfortable chemo chairs

Reclining chairs provide comfort to patients while they receive chemotherapy treatment.

Learn more about how you can support the Alberta Cancer Foundation at albertacancer.ca Clear and concise wayfinding

Wayfinding initiatives play an important role in improving the overall patient experience as they allow patients to navigate a cancer centre with ease.

With the help of donors, the Alberta Cancer Foundation provided new waiting room and treatment chairs, as well as full-sized blanket warmers to cancer centres around the province. myleapmagazine.ca FALL 2017 LEAP 13

ABOUT 45 PER CENT OF CANCER CASES ARE CONNECTED TO CONTROLLABLE FACTORS INCLUDING UNHEALTHY EATING AND EXCESS BODY WEIGHT

14 LEAP FALL 2017

FOOD FOCUS

Photo courtesy of ATCO Blue Flame Kitchen

Nourish yourself with local fall produce FALL IS UPON US, WHICH MEANS summer fruits are out and autumn bounty is in. This is the time of year for comfort food packed with darkly coloured nutrient-rich vegetables and hearty flavours that nourish both the body and the spirit.

Alberta offers perfect growing conditions for many fall favourites, which means there’s plenty of opportunity to eat locally grown produce throughout the season.

Root vegetables including carrots, beets and parsnips, as well as winter squash, are fall weather stand-bys, but often home cooks don’t know what to do with them beyond roasting.

Switching up preparations is one way to keep fall vegetables interesting. A beet, for example, can be roasted and served hot, boiled and put in a cold salad, or spiralized and served as “pasta” the following week.

“Spiralizing creates a very appealing-looking dish,” says Tracey Christensen, manager of the provincial culinary/ quality team at Alberta Health Services. “If you spiralize your beets with your carrots it really comes out beautifully.”

While the seasonal vegetables offer vitamins and nutrients, Christensen says that fall cooking has the added benefit of offering warmth or comfort for those undergoing or recovering from treatment, be it in the form of a sippable soup or a belly-warming stew. Fall produce works particularly well with slow cookers and modern-day pressure cookers, which also make for easier preparation. And, for those who want to cook now and have convenient food later, pickling or preserving is a good way to extend the shelf life of harvest vegetables. LEAP

Citrus Roasted Alberta Beets This recipe from the ATCO Blue Flame Kitchen’s latest cookbook From Our Roots brightens up fresh beets with orange juice.

2 lbs beets, tops and roots removed 2 tbsp. canola oil 1 tsp. salt, divided 3 /4 tsp. freshly ground pepper, divided 1 /3 cup fresh orange juice 3 tbsp. chopped fresh Italian parsley 3 tbsp. roughly chopped fresh chives 1 1/2 tsp. grated orange peel

BEET IT!

1. Preheat oven to 450°F. 2. Toss beets with oil, ½ tsp. salt and ½ tsp. pepper in a large bowl.

3.

Wrap beets tightly in foil and bake until tender when pierced with a fork, about 1 to 2 hours.

Baking time may vary depending on beet size.

Unwrap beets and cool.

4. Peel and quarter beets when they are cool enough to handle. Toss with remaining ingredients in a medium bowl. MAKES ABOUT 4 CUPS

— ELIZABETH CHORNEY-BOOTH Reprinted with permission from ATCO Blue Flame Kitchen

Eating and cancer prevention: fact or fiction?

Karol Sekulic, registered dietician and education resources program lead for nutrition services at AHS, weighs in.

AVOID THESE FOODS Sugary drinks cause cancer Sekulic says that while soft drinks and other high sugar beverages don’t cause cancer directly, they can be a contributing factor to obesity, which is linked to several different types of cancer. Pop, energy drinks and fruit punches are high in calories but low in health benefits, making them poor choices for anyone who wants to maintain a healthy body weight, a key factor in cancer prevention.

Canned foods should be avoided because the bisphenol A (BPA) found in the lining of cans can cause cancer The jury is still out on BPA’s contribution to cancer rates, but those who are concerned may want to avoid canned food and stick to fresh or frozen vegetables when available. That said, when it comes to cancer prevention, it’s important to get a lot of fibre and plant-based proteins, and often the most convenient way to do so is through canned beans and legumes, which shouldn’t be sacrificed in favour of going completely BPA-free. Beans and legumes can also be purchased dry, but do require soaking overnight before preparation, which is a less convenient option.

“There has been enough evidence to show that BPA exposure is questionable,” Sekulic says. “But if people are undergoing treatment, it’s not a focus — they have to meet their nutrient needs first.”

Eating red meat is linked to cancer Red meat is linked specifically to colorectal cancer rates (though Sekulic is hesitant to say that any food outright “causes” cancer). It’s recommended that people eat no more than 500 g of red meat per week, which includes beef, pork, lamb and goat. Processed meats like bacon or cold cuts should also be limited as much as possible.

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WORKOUT

A Brief Guide to Obstacle Course Racing for a Cause Obstacle course races aren’t just for the super-serious athletes. They’re also for anyone who wants to get outside, get moving and raise a little money for charity by KARIN OLAFSON

Here in Alberta, there are several fun events that support the Alberta Cancer Foundation. Rob Dickens, the chief operating officer and co-founder of Rugged Maniac, shares everything you need to know if you’re hoping to try a charity-focused race for the first time.

ILLUSTRATION ANDREW BENSON

16 LEAP FALL 2017

Who should race obstacle course events?

Unlike other obstacle course races out there, Dickens says Rugged Maniac isn’t targeted at extreme athletes. “People of all shapes, sizes, ages and backgrounds come to our event,” says Dickens. “We’ve seen participants who are 85 years old, we’ve seen participants who are 400 pounds, and we’ve seen families participate together.”

How to train If you want to finish, you don’t need to undergo a rigorous training regimen.

“To get the most out of the experience, get yourself into cardiovascular shape.

You want to be able to complete five kilometres, running or walking,” says Dickens. “Beyond that, try to work on your upper body strength so you can lift yourself up over a ledge.”

What to expect on race day Race day begins with check-in, where you’ll get your race number and an assigned start time. The Rugged Maniac course has 25 obstacles over a distance of five kilometres. The average competitor completes the course in 50 to 60 minutes.

When the race is over After you finish and collect your medal, stick around. “It’s a race, but Rugged Maniac is also a festival,” says Dickens.

“There’s craft beer, food and crazy contests like pie-eating and limbo competitions.”

OBSTACLE COURSE RACES THAT BENEFIT THE ALBERTA CANCER FOUNDATION COLOR ME RAD

DOWN AND DIRTY

RUGGED MANIAC

WHERE Southern Alberta Institute of Technology, Calgary WHAT The only obstacles are the colour bombs, but you want to get hit. The goal is to finish the five-km course as bright and colourful as possible.

WHERE Sunridge Ski Area, Edmonton WHAT A five-km obstacle course that features lots of lifting, lots of climbing and an 80-foot slip-and-slide down the ski hill.

WHERE Spruce Meadows, Calgary WHAT Over five muddy kilometres, racers complete 25 or more obstacles, which could include crawling under barbed wire, lifting heavy sandbags and running up the Warped Wall.

Exercising Through CancerRelated Fatigue It ranges from mild to severe, but according to Dr. Linda Watson, who leads person-centred care integration, provincial practices at CancerControl Alberta, maintaining an active life is one of the best ways to manage this common symptom.

What is cancer-related fatigue?

Cancer-related fatigue is a common problem that cancer patients experience.

It’s understood to be a persistent sense of tiredness, be it physical, cognitive or emotional. Unlike the fatigue experienced by a healthy individual, cancer-related fatigue does not improve with extra rest or sleep. Watson says the duration of cancer-related fatigue varies from patient to patient, sometimes lasting months after cancer treatment is done.

Managing cancer-related fatigue with exercise

Cancer-related fatigue isn’t something that can be cured or fixed, but it can be managed. “There are several ways cancer patients can manage their fatigue, like eating well and getting good-quality sleep. But evidence is strongest around being active,” says Watson.

Like any exercise regimen, there’s no one-size-fits-all program to best manage this symptom. Every patient experiences fatigue differently and everyone has a different fitness level. “We recommend people get 30 minutes of exercise a day, five days a week. If you aren’t already exercising, start slowly with low to moderate activities,” says Watson. She recommends walking, yoga and gardening in 10-minute bursts several times a day. When ready, work up to exercising for longer stretches of time. If individuals are already active, she recommends trying to continue those activities they already enjoy and, if it makes sense, add in strength training.

“The most important thing is to be as active as you can,” says Watson. “An exercise plan is all about the individual and taking small steps forward.” LEAP myleapmagazine.ca

FALL 2017 LEAP 17

EXPERT ADVICE

to home. There’s a strong benefit for AHS and patients alike to hold more of these trials.

“It’s the industry that pays for the drugs for patients in clinical trials. In 2016, just in Calgary alone, we saved $8.5 million in drug costs, because the industry sponsors of the trials cover the costs of the drugs,” Valade says.

“If they were on standard care therapy, then it would be Alberta Health that would be paying for those drugs, or the patient, and some of these drugs are very expensive.”

Q: What misperceptions do people have about clinical trials?

We ask the experts for advice on the best way to access clinical trials and tips for charitable estate planning

by ANDREW JEFFREY

province. Valade shares her insight on how patients can access trials.

NICOLE VALADE

CLINICAL TRIALS ARE A VITAL FACTOR IN

developing new cancer treatments. These trials help researchers better understand how treatments actually work and can lead to medical breakthroughs. Nicole Valade, director of Alberta Cancer Clinical Trials, CancerControl Alberta at Alberta Health Services, has seen trials become more accessible to patients across the

Q: How do patients access clinical trials in Alberta, and what should they know about the process?

Valade says patients receive clinical trial brochures as part of a booklet they receive upon diagnosis, and posters are visible in many Albertan clinics. Patients can register on the Alberta Cancer Clinical Trials website and can be notified immediately via email or text when clinical trials open. Typically, trials have been held in Edmonton and Calgary, but thanks to support from the Alberta Cancer Foundation, AHS is piloting more trials in Lethbridge, Medicine Hat and Red Deer so patients can access clinical trials closer

Valade notes that the centres conducting clinical trials use state-of-the-art therapies in addition to standard care and subsequently produce better outcomes for patients. Along with many not realizing this reliable record, the biggest misperception Valade hears about clinical trials is that people don’t realize how regulated they are. Before getting involved in a trial, patients sign an informed consent form listing the details, requirements and risks of the testing. “I’ve worked in clinical trials for a number of years and I know there’s been some stories about clinical trials in the past, but today it’s so much more regulated,” Valade says.

We have Food and Drug Administration (FDA) visits, Health Canada visits, audits, inspections, and a number of standard operating procedures we have to follow.

As soon as we start to see any toxicity or adverse events [which vary depending on the treatment], we stop and we have to advise our sponsor or whatever organization that we’re working with. It’s a lot safer than it used to be.”

Learn more about clinical trials at albertacancerclinicaltrials.ca or how to donate to clinical trials at albertacancer.ca.

ILLUSTRATION JENNIFER MADOLE

18 LEAP FALL 2017

MIKE SKRYPNEK

THERE ARE MANY WAYS FOR INDIVIDUALS

to create meaningful impact and leave a lasting legacy. Making a charitable donation in your will is one way to include the Alberta Cancer Foundation as one of your priority causes.

Mike Skrypnek, director of wealth management at Richardson GMP, and author of the book Philanthropy; An Inspired Process, has plenty of knowledge to share about incorporating non-profit donations into your estate planning.

Q: What is the best way to donate?

There are factors Skrypnek advises donors to always think about. For instance, donating a percentage of your estate is more appropriate than a dollar amount just in case your estate is somehow devalued.

As well, disclosing your identity and donation soon after making estate plans is helpful to set an example and keep loved ones informed. It’s also useful for the recipient organization to know its efforts to encourage planned giving are working.

“The next best option, and this gives maximum flexibility, is to consider a donor-advised fund. A donor-advised fund is essentially a private, personal foundation,” Skrypnek says. “It’s as simple as naming that donor-advised fund controlled by you or your family members as the beneficiary of a gift in your will. And then it would disperse the funds to the named charities list.”

Alternatively, Skrypnek suggests adding a beneficiary to your registered plan, which is a more direct way to give. You can also name a charity as a beneficiary to a portion of your RRSP or a beneficiary of an insurance policy. This reduces costs and creates a tax credit.

“These giving options create direction and direct connectivity to the charitable gift. [This] creates an immediate tax benefit for the estate and will go outside of the estate itself. So it is not included in the assets that are calculated for various costs like executive fees or probate fees.”

Q: How can I plan my estate to donate funds to cancer research organizations?

Skrypnek says the first step someone interested in legacy giving needs to take is to create a will. “You need to engage and start working with a trust lawyer or a will and estates lawyer,” Skrypnek says.

“At the same time, [you should] engage with some form of advisor, either financial or accountant, in a planning process, so you understand your financial picture

going forward and how that affects your ability to give.”

Q: How do I find the right charity to donate to?

Skrypnek suggests identifying the charity you’d like to donate to through the Canada Revenue Agency’s website listing of charities (cra-arc.gc.ca/charitiesandgiving).

“It’s the most robust database of information. And that in particular will allow you to select which charity and identify the charity number. It has to be a registered charity in Canada in order to gain the tax credit for the gift, but also to ensure that you’re gifting to the right organization. A lot of organizations may have certain names, but the actual charity name and number may be slightly different.” LEAP

THREE OTHER WAYS TO GIVE BACK TO THE ALBERTA CANCER FOUNDATION TODAY 1. Donate Directly Online.

Visit albertacancer.ca and click on the “general donation” button to donate now.

2. Give Monthly. Sign up on albertacancer.ca to make monthly donations. You can make a big impact for as little as 27 cents a day.

3. Buy Tickets to the Cash and Cars

Lottery. Visit cashandcarslottery.ca for a chance to win big prizes and make a difference for Albertans facing cancer.

Since 2010, the Alberta Cancer Foundation has invested more than $20 million in support of clinical trials. myleapmagazine.ca FALL 2017 LEAP 19

by C O L L E E N B I O N D I illustration P E T E RYA N

20 LEAP FALL 2017

THE INNOVATION ISSUE

IN

INNOVATION DIAGNOSIS THE EARLY DETECTION OF CANCER CHALLENGE INVITES ALBERTA BUSINESSES TO CREATE NEW TOOLS FOR EARLY DETECTION AND DIAGNOSIS

A

ccording to Alberta Health Services, an estimated 19,865 new cancer cases are expected in 2017 (approximately the same number as the entire population of the city of Chestermere). There is no time like the present to inject dollars and time into one of the key ways of slashing those daunting numbers — early detection. >

myleapmagazine.ca FALL 2017 LEAP 21

The province’s Early Detection of Cancer Challenge is poised to do just that. “In general terms, the earlier you get diagnosed, the better the prognosis is,” says Dr. Megan Lee, director of program investment at Alberta Cancer Foundation.

“Traditionally, industry investments have been in therapeutics, but we’re realizing we have to invest in early diagnostic as well. It improves survival rates and quality of life to detect cancer as soon as possible.”

The challenge is an opportunity for Alberta technology companies to develop market-competitive technology that would significantly enhance patient outcomes.

The winning proposal has access to up to $2 million to bring the product to market.

The initiative came about as a result of conversations among the three key stakeholders — Alberta Cancer Foundation, Alberta Innovates and DynaLIFE Medical Labs. The three decided their individual goals (positive patient impact, economic development and diversity, and delivery of diagnostic services respectively) could align beautifully into an impressive winwin-win for Albertans.

Alberta Innovates also directs the administration of the challenge, which launched on May 1, 2017. A webinar was held with stakeholders and potential applicants on May 15. By June 21, it had received seven opportunities.

“It was fun and easy up until that point,” says Dr. Raja Mita, director of small business innovation with Alberta Innovates. Whittling them down was the hard part, so he and his fellow stakeholders relied on a dedicated review panel of external experts to narrow the field.

First, they determined which proposals

THE GOALS OF THE EARLY DETECTION OF CANCER CHALLENGE 1. Affect patients in a positive way by detecting cancer earlier. Early detection improves treatment results and quality of life and reduces morbidity and mortality rates.

2. Diversify the economy by

encouraging business development in the health-care sector, thereby bringing jobs, investment and an economic boost to Alberta.

were technologically viable. They considered the competition and what already existed. What was the probability this technology would succeed in the marketplace within the prescribed window of three to four years? And, if it did succeed, could the team be assured of patient and economic impact?

“We cut out 70 to 80 per cent at that point,” says Mita.

The next evaluation category was business readiness. They considered whether the company had financial projections for the item, a sales strategy and customers to ultimately sell the product to? They also examined the company’s ownership and management structure and history with a “fine-tooth comb” for financial, legal and ethical viability.

Based on these calculations, the review panel suggested a candidate. The three partners made the final decision, which will be announced by October.

This is not the end of the story. At this point, another phase begins, which might be the most difficult — the one that actually brings the product to the marketplace.

“Our goal is to ensure whatever technology we end up choosing is being developed with an end goal of positive impact for Alberta patients,” says Lee. Medical diagnostic devices are approved through Health Canada, in some cases, not all, so those regulatory checks and balances need to be in place. This is a necessary, but complex and resource-intensive task, says Mita. Plus, the $2 million, although generous, might fall short of bringing a tool to the shelves.

Ultimately, nine out of 10 initiatives will fail. “It is a risky endeavour,” he says. “If we do not meet the milestones, we will shut it down.”

Mita and his crew will help the company develop a detailed project and a risk- mitigation plan and will provide mentors to support every step.

Mita is optimistic and believes that this integrated model — with the three stakeholders pulling together for the greater good — stands a very good chance. LEAP

WHY EARLY DETECTION MATTERS According to Alberta Health Services, patients whose cancers are diagnosed earlier, in stage I or II, have a higher survival rate than those diagnosed at later stages.

For example, colorectal cancer patients diagnosed in stage I or II have a more than 90 per cent

22 LEAP FALL 2017

chance of survival three years after diagnosis as compared to someone the same age who is cancer free.

Similarly, breast cancer patients diagnosed in stage I or II have a 98 per cent survival rate and only a 36 per cent survival rate when

diagnosed in stage IV. Thanks, in part, to early detection and screening programs, cancer mortality rates in Alberta have fallen on average by 2.1 per cent annually between 2004 and 2014.

Visit screeningforlife.ca to learn more.

THE INNOVATION ISSUE

MICHAEL CIVITELLA, EXECUTIVE DIRECTOR OF OPERATIONS AND FACILITY DEVELOPMENT OF THE CALGARY CANCER CENTRE

Innovation in Design PATIENT-CENTRED DESIGN INNOVATIONS IN URBAN, REGIONAL AND COMMUNITY CANCER TREATMENT CENTRES ARE DESIGNED TO FOSTER OPTIMISM AND HOPE, CREATING NEW OPPORTUNITIES FOR BETTER CARE ACROSS ALBERTA >

by K A I T LY N H A N S O N

photography JA R E D SYC H myleapmagazine.ca FALL 2017 LEAP 23

Alberta’s cancer treatment and care facilities continue to evolve and innovate, consulting with patients, staff and other stakeholders to create new opportunities for patient-centred care.

A PLACE OF HEALING For Michael Civitella, careful attention to detail is part of what makes the new Calgary Cancer Centre a special place.

“When you think of a cancer centre, it can have a lot of negative connotations, Civitella says, who is the executive director of operations and facility development for the new centre.

“There were a lot of things in the design we did to try and create a great environment that makes people feel like this is a good place to get healed and looked after.”

Key design features like natural light throughout the facility and exposure to natural elements and exterior surroundings were incorporated throughout the design of the centre, which is projected to open in 2023.

“Traditionally, in hospital facilities, you have one major entrance with a lot of windows and openness, and it’s great,” explains Civitella. “But as soon as you leave that to go to the care areas, or the areas where a lot of the treatments happen, it becomes darker.”

This was a problem that the Calgary Cancer Centre design has solved with the creation of a unique courtyard at the heart of the facility.

“We wanted to make sure that access to natural light and nature comes throughout the building, inside and out,” he says.

Particular attention was also paid to the needs of medical staff during the design process, Civitella adds.

“I think that if you have a staff that is more passionate, more healthy, and feel good about the place, you know that’s going to have a positive impact on the care we provide to the patients,” he says.

While individual design elements — like 24 LEAP FALL 2017

staff lounges distributed throughout the building and the incorporation of natural light — seem small on their own, Civitella says the overall effect is a hopeful, healthy space of healing.

“I think at the end — and this is my own personal opinion — that’s what will make this cancer facility special.”

VISION AND VOICE Charlotte Kessler, an active volunteer with the Calgary Cancer Centre’s Patient & Family Advisory Council, says that incorporating patient voice into the design of the new facility is an essential part of the process.

As a cancer patient herself, Kessler admits that she has experienced inconsistencies in her care since her diagnosis of anaplastic astrocytoma — a rare form of brain cancer — in 2013. These inconsistencies, both good and bad, inspired her to assist in the design of the new Calgary Cancer Centre.

“My initial experiences weren’t great in that I felt very lost in the shuffle,” she explains.

However, she adds that she received “great care” from the Tom Baker Cancer Centre neurological trial team during a later clinical trial.

“I felt like they were giving me patient-centred care, that they were interested in what was happening with me, not just in my diagnosis, not just in what my medical problem was today,” she says.

“They cared, and asked, and listened, and engaged.”

From the patient perspective, Kessler, along with other patients and families, has become a passionate advocate for instilling a feeling of hopefulness throughout

the new Calgary Cancer Centre.

“We were trying to come up with ways to give [the design team] an end goal — it needs to feel warm, it needs to be welcoming, lighting needs to be adjustable, temperature needs to be adjustable, clean, fresh air, lots of natural light, patient movement, good nutrition and full of hope,” she says.

Kessler says that seeing the patients’ vision for the Calgary Cancer Centre come to life is gratifying, and she is very excited to continue to be part of the facility’s development process ahead of its projected opening in 2023.

“Everything, from the minute you walk in to every moment you’re with your care team … will be just a constant feeling of caring and hope,” she says. “You’re part of the team, not the person being taken care of.”

MEETING A LOCAL NEED Outside of Calgary and Edmonton, Brenda Hubley is committed to ensuring that Alberta’s cancer patients living in rural and regional centres have access to exceptional care in their local areas.

Hubley, who is the executive director, community oncology and provincial practices with CancerControl Alberta, oversees operations at four regional cancer centres, as well as 11 community cancer centres across the province.

In recent years, she says, patients of these regional cancer centres, which are located in Grande Prairie, Red Deer, Lethbridge and Medicine Hat, as well as patients receiving treatment at community cancer centres, have become increasingly involved in articulating how these spaces can better meet their needs.

“We’ve actually purpose-built them to meet a mid-sized population need and so they have specially built chemotherapy units, they have radiation therapy units, so the exact same type of services with the same quality, with the same infrastructure, basically what you’re needing for safe, quality care, as you’re going to see at a larger site,” she explains. “But from a physical space, they’re smaller.”

One challenge, especially in community

RENDERING OF THE NEW CALGARY CANCER CENTRE. PROJECTED TO OPEN IN 2023

treatment facilities, which tend to operate out of smaller, existing buildings, is that these facilities were not purpose-built as community cancer centres.

“Oftentimes when those centres start up, they are based on a local need, a local desire to say, ‘Look, we’ve got a cancer population here and it would be great if they could get their treatment closer to home,’” Hubley says.

“We kind of retrofit them or find a little spot within a hospital, or within a health facility, and create a space,” she says.

While the fundamental framework of a building usually can’t be changed, patient voice is carefully considered as part of the renovation process. For example, Hubley says the regional cancer centre in Lethbridge, the Jack Ady Cancer Centre, was the first of its kind in Alberta to feature a doorless radiation vault — a design feature that has now become standard practice in other treatment facilities across the province.

“It’s not always that the large centre informs the small,” she says. “It can be the other way around, where a design or

experience at a smaller centre informs the larger.”

The result, she concludes, is better care for cancer patients across Alberta, and better working environments for staff and patients.

“If an environment is meeting patient needs, it’s going to meet the staff’s needs.

If the environment is meeting the staff needs, it’s going to meet patient needs,” says Hubley. “Whenever somebody is more comfortable in that environment and has the ability to deliver on what they need to do, it’s going to meet their needs.” LEAP

SMALL CHANGES MAKE A BIG DIFFERENCE Brenda Hubley, CancerControl Alberta’s executive director of community oncology and provincial practices, shares examples of patient-centred design KEEP DISTRACTIONS POSITIVE Patients tend to be more comfortable in a treatment space when they have access to “positive distractions,” Hubley says. “When we position chemo chairs that patients are comfortable in, we give them the ability to have intentional distractions by having TVs

or music or designs on the ceilings.”

LET THE LIGHT IN “We try to build in the ability for natural light,” she explains. When this is challenging in a retrofitted space, there are other ways to bring in natural elements. “We try to build in spaces and oppor-

tunities for calming works of art, the use of natural materials, and feelings of spaciousness.”

WORK WITH THE BUILDING While the fundamental structure of a treatment facility undergoing a renovation can’t change, Hubley says that small

adjustments can make a world of difference. “We’ve renovated in Lethbridge, for example, where we have a long hallway,” she says. “There’s no getting around it. But when you create some curves — on the floor, on the wall, and even in the ceiling design — suddenly that hallway doesn’t look as long.

myleapmagazine.ca FALL 2017 LEAP 25

THE INNOVATION ISSUE

INNOVATION IN

PATIENT SUPPORT A new pilot program gives young adults diagnosed with cancer the support they need

by LY N DA S E A photography COOPER & O’HARA

I

t all started with a small bump on her left knee. In her last year of high school, Rickie-Lee Hildebrand was diagnosed with osteosarcoma, a type of bone cancer, and would eventually need surgery to remove the tumour. Hildebrand was able to convocate with her classmates, she crossed the stage on crutches but then spent the next six months training herself how to simply walk again. >

PATIENT 26 LEAP FALL 2017

[LEFT] RICKIE-LEE HILDEBRAND WAS DIAGNOSED WITH OSTEOSARCOMA [THIS PAGE] JODIE JESPERSEN IS ALBERTA’S FIRST AYA PATIENT NAVIGATOR

NAVIGATOR myleapmagazine.ca FALL 2017 LEAP 27

“When I started noticing a small bump on my knee, I never thought cancer. I thought I had just pulled a muscle,” she says. As she underwent chemotherapy treatments, she recalls thinking, “I was worried about what all this radiation [from scans and ongoing tests] is doing to my body. I’m a young person, but I feel like an 80-year-old. I feel better now, but I have concerns about having a kid one day.”

Hildebrand says that after her diagnosis it was overwhelming and she didn’t know who to turn to for her big questions.

“Other than my mom, there was my oncologist, but they weren’t always available.

I didn’t even know what I should be asking, I didn’t know what my options were.”

Every year in Alberta, 200 to 300 new cases of cancer are diagnosed in adolescents and young adults (AYAs) aged 15 to 29. Neither under the umbrella of pediatrics nor entirely adults, they’re often left in a grey zone, with specific needs unmet in the current health system.

A pilot program is aiming to change that. In May 2017, Alberta Health Services and the Alberta Cancer Foundation officially launched the new AYA Patient Navigator Program — a first for Western Canada.

“ We need to provide age-appropriate care for these young adults because they are a unique population within oncology.”

– Jodie Jespersen, AYA patient navigator

Jodie Jespersen is a registered nurse and the province’s first AYA patient navigator. She currently works with about 35 young cancer patients who are under the age of 30 at the Cross Cancer Institute in Edmonton.

“We need to provide age-appropriate care for these young adults because they are a unique population within oncology,” says Jespersen. Young adults with cancer often feel distress over social disconnec28 LEAP FALL 2017

tion with peers and experience isolation and questions about an uncertain future that can include career, financial and fertility issues.

What Jespersen provides is individualized psychosocial support. Highly collaborative, the AYA Patient Navigator Program is the opposite of a one-sizefits-all approach. Available at any time on fairly short notice via phone calls, visits to in-patient floors and emails, Jespersen is a constant, familiar face who young patients can talk to about things other than medication side effects.

“They know at any point, they can contact me and I will rally the support they need,” she says. “I want them to feel like there’s someone in their court, cheering them on and just giving them a voice that says, ‘You can do this.’”

Even though Hildebrand didn’t have an AYA navigator during her own cancer journey, she’s excited about what this new program will bring for the young people coming into the Cross Cancer Institute now.

“Cancer is not easy. I don’t think anything we can do would make it easy.

But it would have lessened the worries

and hardship if I had that one person who was like, ‘I’m here for you, if you have any questions, just come to me and I’ll find the answers for you,’ I think that would have made the world of difference to me.” LEAP

Cancer patient support programs in Alberta YOUNG ADULT CANCER CANADA (YACC) YACC supports young adults with cancer at any stage and provides connections to peers.

Its Localife program is a peer-led activitybased group where cancer survivors can enjoy fun activities in Calgary and Edmonton.

Open to anyone who received a cancer diagnosis between 15 and 39; survivors can also bring support people to events. youngadultcancer.ca STRIVE & THRIVE CANCER PROGRAMS Adventure therapy is at the heart of this survivor-focused program. Since 2009, founders Mike and Bonnie Lang have been coordinating wilderness expeditions for young adult cancer survivors. survivethrive.org

THE INNOVATION ISSUE

25 HOURS ITIONAL 70% 169 TRAD

241

29% 72 ENHANCED

THE TOTAL PATIENTS IN P ABDOMINAL FREE FLA DY SURGERY STU

RECOVERY AFTER SURGERY (ERAS) PATIENTS

ERAS PATIENTS IN THE MOST RECENT 2015-2016 STUDY HAD (ON AVERAGE)

RETURNED TO AMBULATION

LESS NARCOTICS

E THAN PATIENTS 72% US ON TRADITIONAL RECOVERY PATH

REDUCTION IN USE

AUSEA 67% OF ANTI-N ATION THAN

MEDIC PATIENTS ON TRADITIONAL RECOVERY PATH

19 HOURS

RETURNED TO EATING A REGULAR DIET 19 HOURS EARLIER THAN PATIENTS ON TRADITIONAL RECOVERY PATH

8 4.

DAYS

(ABILITY TO WALK FROM PLACE TO PLACE) 25 HOURS EARLIER THAN PATIENTS ON TRADITIONAL RECOVERY PATH HOME NEARLY TWO M DAYS EARLIER FRO

HOSPITAL AFTER SURGERY — 4.8 DAYS VERSUS 6.6 DAYS AVERAGE FOR PATIENTS ON TRADITIONAL RECOVERY PATH

TEAM ALSO THE ERAS PROJECT RAG, D. INCLUDES DRS. C. SCH , J. EHE DUMESTRE, A. ASTAN AS C. WEBB REDWOOD, AS WELL ELL AND M. SHEA-BUDG

INNOVATION IN RECOVERY

The Enhanced Recovery After Surgery protocol offers a better, faster path to healing by S E A N P. YO U N G

T

he Enhanced Recovery After Surgery (ERAS) protocol for reconstructive breast surgeries, supported by the Alberta Cancer Foundation, was first examined in Alberta through a pilot study run out of the Foothills Hospital in 2013. It followed a total of 40 patients and their recoveries.

The protocol is made up of 18 elements that should be followed for the lowest complication rate and best outcomes, including adequate patient education and counselling prior to surgery, avoiding prolonged fasting before surgery, and reducing the use of narcotics for pain management post-op. The initial study showed the 29 patients on the ERAS protocol reported improved outcomes on nearly all recovery subskills in comparison to the 11 patients on a traditional recovery regimen.

“We were able to get them home the same night, to their families and their own beds, while also improving their care experience,” says Dr. Claire Temple-Oberle, one

of two surgeons at the Tom Baker Cancer Centre on the ERAS project team.

Temple-Oberle and her team conducted a second study in 2014–15 that further validated the ERAS protocol’s effectiveness in getting patients home sooner, with

showed to be a faster, better path to healing.

Temple-Oberle says her team has applied for additional funding from the Foundation through the Tom Baker Cancer Centre to develop a mobile app that will be used in a

“ We were able to get them home the same night, to their families and their own beds, while also improving their care experience.”

– Dr. Claire Temple-Oberle, surgeon, Tom Baker Cancer Centre ERAS project team

fewer complications and better overall outcomes than traditional recovery protocols.

The most recent and largest study, in 2015–16 tested the ERAS protocol’s effectiveness on 241 patients who underwent abdominal free flap reconstruction surgery, where the patient’s own abdominal tissue is used in the reconstruction of the breast. Even when used after a more invasive reconstruction surgery, the ERAS protocol, used by 72 of those patients,

post-operative home-monitoring trial, essentially allowing patients to quickly check in with their surgeon post-op.

As the ERAS approach continues to gain momentum for many major surgeries worldwide, Temple-Oberle hopes to see it used more widely in Alberta.

“People are recognizing the importance of it,” she says. “It not only improves the patient’s care experience, it also decreases the use of health-care resources.” LEAP myleapmagazine.ca FALL 2017 LEAP 29

THE INNOVATION ISSUE

INNOVATION IN PREVENTION

The Community Cancer Prevention & Screening Dashboard offers Albertans an interactive way to prevent cancer

by S H A N N O N C L E A RY

WHAT IS IT? The Community Cancer Prevention & Screening Dashboard is an online tool that co-ordinates provincial and local cancer statistics, making them accessible, easy-to-read and useful for the public.

Albertans can access this user-friendly “dashboard” to learn more about cancer prevalence, modifiable risk factors and screening rates in their communities. The product is a partnership between the Alberta Cancer Prevention Legacy Fund (ACPLF) and Alberta Health Services Public Health Surveillance and Infrastructure in an effort to reduce the rate of preventable cancer in our province.

Melissa Potestio is a senior scientist for the ACPLF. She says before the dashboard existed, there was no co-ordinated place where this type of data was publicly available and translated for Albertans.

“We really wanted to do this to help inform and evaluate local cancer prevention and screening strategies,” she says.

30 LEAP FALL 2017

EASYTO-READ CANCER STATISTICS

HOW DOES IT WORK? The dashboard’s interactive features help everyday Albertans understand and use the data in meaningful ways.

Community groups are able to compare local screening rates, such as breast, cervical and colorectal cancer screening, to provincial targets to measure local prevention efforts and identify priorities.

Last year, the province targeted the 70 per cent of eligible Alberta women who would receive breast cancer screening. Screening is cited as the best way to detect breast cancer in its early

stages. The actual provincial screening rate in 2016 for women ages 50 to 74 was 62.8 per cent. If you lived in the community of Wood Buffalo, for instance, you would see that the screening rate in your area was 38.6 per cent. Potestio says providing data at the lowest geography possible is key in supporting local communities with healthy decision-making.

“They can look at the dashboard and have an overall sense of where their opportunities are for improvement,” she says.

WHY IS IT IMPORTANT? According to AHS, about 45 per cent of cancer cases in Alberta are linked to a handful of modifiable factors, such as smoking, stress, sun exposure and screening measures. The dashboard provides evidence-based, locally relevant data concerning these and other cancer risks, as well as advice and opportunities for individuals and communities to take action.

Users can easily find detailed sources for each data element, interactive tools like the HPV Vaccine Decision Tool,

USEFUL EVIDENCEBASED DATA

and clear explanations of the scientific associations between certain behaviours and health risks.

For example, the dashboard not only shows the most recent statistics for sunburns in Alberta’s communities but also explains the scientific link between UV exposure and skin cancers.

“When you’re looking at the prevalence of sunburn in the province, we actually spell that out so that every Albertan can understand why that’s important information,” Potestio says.

WHAT IS THE GOAL? The dashboard’s immediate goal is to promote healthy communities in our province. The tool makes it easier for all Albertans to find and use comprehensive cancer profiles for their area, and to provide the resources for governments, community organizations and individuals to take action in reducing the risk of cancer.

“We hope that the average Albertan would be interested in looking at this type of data to then give some consideration to how they themselves feel about their modifiable risk factors,” said Potestio. “Are they considering their fruit and vegetable intake? Are they interested maybe in taking action on their Body Mass Index?”

The dashboard will expand to include online forums as well as local resources for cancer prevention programs, from smoking cessation courses to more information on other community health resources. Potestio says the dashboard is part of a bigger vision for health promotion and cancer and chronic disease prevention in the province.

“Our goal, ultimately, is for an Alberta where most cancer is prevented.” LEAP myleapmagazine.ca FALL 2017 LEAP 31

CARING

Partnering With Patients

A new initiative turns to patients to find new directions for cancer research

by LAUREN DENHARTOG

THE ALBERTA CANCER FOUNDATION’S NEW PATIENT PARTNERSHIP

Strategy asks patients what’s most important to research in head and neck cancer. It can be difficult for patients to contribute to the conversation with respect to what needs to get researched, and as a result, research often focuses on the priorities of other stakeholders.

“It’s what we call a mismatch in priorities,” says Leah Lechelt, who led the patient partnership project at the Alberta Cancer Foundation.

In its first collaboration, the Patient Partnership Strategy sought the input of 900 head and neck cancer patients, some diagnosed up to 35 years ago. Head and neck cancer was chosen because it has a high mortality rate (40 to 50 per cent) and many patients suffer life-long consequences of treatment, including permanent damage to their tongue, jaw, throat or even the loss of an eye, nose or ear.

“There is much potential to conduct research into reducing the effects of treatment,” she says.

In June 2016, an anonymous survey was sent to head and neck cancer patients, family members, caregivers and clinicians asking them, in their own words, what they believed should be answered by new research.

From a list of 800 issues, the group came up with 10 priorities, which included questions about rehabilitation and better knowledge about early signs and symptoms.

The number one priority for patients was not surprising. Respondents wanted to know what the best overall treatment combination or regimen (surgery, radiation, chemotherapy, immunotherapy) and dose/ schedule was for various head and neck cancers to achieve a good prognosis while reducing undesirable treatment effects.

This year, the Foundation issued a research call in Alberta focusing on the priorities identified by patients and clinicians. Patients will help evaluate the proposals along with the other review panel members.

“This is the chance for patients to be there right at the beginning to say, ‘Let’s make sure we focus on research questions that are most critical to us,’” Lechelt says.

Patient Kimberly Flowers participated in the strategy at a difficult time during a very lengthy recovery from stage III squamous cell carcinoma of the tongue cancer.

“Being involved in these projects gave me a sense of purpose. It gave me a sense of achievement. It actually supported my recovery,” she says.

“I have direct input into a treatment that I may need, down the road, but certainly it’s also improving the treatment for patients who are coming up after us,” Flowers says. “Any small things we can do to make things a little bit easier for the complex nature of head and neck cancer is so important.”

“ Any small things we can do to make things a little bit easier for the complex nature of head and neck cancer is so important.”

– Kimberly Flowers, patient advisor

Roxana Anderson doesn’t recall ever being asked what mattered most to her as a patient when she was diagnosed 30 years ago with cancer of the mucous producing glands of the eyelid. By the time her cancer was accurately diagnosed, the cancer had spread to her eye, which had to be removed. Anderson found involvement in the Patient Partnership Strategy very empowering.

“The patient is the only one who really knows what their whole journey was, from symptoms to diagnosis to treatment to lifelong problems that you might have or psychological issues that might come up,” she says.

“There is a lot of wisdom with patients.” LEAP

ILLUSTRATION JENNIFER MADOLE

myleapmagazine.ca FALL 2017 LEAP 33

LIVING WELL

Shining a Light on Sexual Health The OASIS program helps cancer patients and their partners reconnect by MAE KROEIS RELATIONSHIPS CAN MAKE ALL THE

difference in the life of a person with cancer.

Social support has a major impact on quality of life. For certain cancers, research has shown that marriage can be more beneficial to survival than chemotherapy.

While the experience of cancer can certainly bring couples closer together, it can also challenge the relationship. For many people facing a cancer diagnosis a major relationship concern is around sexual health and intimacy. Questions like: “Will I still feel sexy after a mastectomy?” “Will prostate cancer cause erectile dysfunction?” “Will I still want to have sex?” and thoughts like: “I guess we just won’t have sex anymore” roll around the minds of patients with sexual health concerns. The Oncology and Sexuality, Intimacy and Survivorship Program (OASIS) acknowledges these questions are common, normal and emerging to the

forefront of cancer treatment. The OASIS program recognizes the strain cancer can put on a relationship and an individuals’ sexual health and offers support for cancer patients and their partners to reconnect.

Treatment for many cancers, not just those related to reproductive organs, can lead to physiological concerns like vaginal dryness, loss of libido or erectile dysfunction. Dr. Jill Turner, a psychologist with the OASIS program based out of Edmonton, says the emotional impact of cancer on sexual health should be considered, which includes changes to people’s sense of self, energy levels, body image, mood and interest in sex. These factors can influence the desire for a sexual relationship and consequently how a couple is used to relating to one another. “For some couples,” says Turner, “having a regular sex life — whatever that means to them — is a bit of a bond that

can help cement a relationship, and when that changes there can be lots of different fallout from that.”

Turner sees patients for concerns around body image, changes in mood, adjustment, and the impact of cancer on their relationship or libido. “Sometimes it’s looking at the health of the relationship, but also how people communicate, their sense of fun together, exploring what some of the challenges and barriers are. And sometimes we see people one-on-one. We look at other kinds of mood-related things that could also be impacting their relationship,” she says. “It’s difficult to be in a relationship if one person is feeling significantly depressed or anxious or having trouble adapting to health-related changes.”

Turner and her team address a range of patient concerns but lists lack of libido, painful intercourse and vaginal dryness as ILLUSTRATION JULIE MCLAUGHLIN

34 LEAP FALL 2017

HOW TO STAY INTIMATE WHEN SEXUAL HEALTH CHANGES 1. the three most common.

Amy Driga, occupational therapist with the Edmonton program says that a concern may only emerge if there is a mismatch with a partner’s expectations or desires. Driga adds that not all patients experience these strains on their relationship and distress is not an all or nothing phenomenon.

“ Trying to think outside the box and trying new ways of conecting sexually can be helpful.”

– Dr. Erica Wiebe, OASIS program oncologist

The multi-disciplinary OASIS program adopts a tailored approach to address each patient’s unique needs. The team addresses the direct physiological impact of cancer and cancer treatment on usual sexual functioning (for example, vaginal dryness and dyspareunia), explores functional solutions to problems causing interference in usual sexual activity or offers counselling or assessments to patients or couples.

“Sometimes there are simple straightforward

solutions like using vaginal moisturizers,” says OASIS program radiation oncologist Dr. Erica Wiebe. Other times it’s a matter of helping couples solve problems. “We sometimes tend to get kind of rigid in what our sexual lives look like or we get into habits. So trying to think outside the box and trying new ways of connecting sexually can be helpful. I think that communication and then exploring what the expectations are and also trying to be flexible and adaptable to the situation without losing that sense of fun can be helpful.”

The OASIS program aims to create an environment where patients feel safe and comfortable talking about sexual health and can get the information they need. It also focuses on staff education to increase the knowledge and comfort of health-care providers on this topic. Ultimately the OASIS program team wants patients to understand that changes in their sexual health functioning are normal and that, according to Wiebe, “although it may be difficult or can create challenges for couples that there are ways of navigating it to minimize the impact on a relationship … relationships can come out the other side just as healthy or stronger than before.” LEAP

GET CREATIVE. Things like sex toys, lubricant or new positions can help overcome barriers such as lack of desire, dryness or uncomfortable penetration.

2.

TAKE THE PRESSURE OFF by focusing on non-sexual ways to connect. Physical touch, including kissing, hugging, holding hands or date nights can help you feel close without the pressure of sexual activity.

3.

DON’T GIVE UP. It can be hard to adjust to the changes in your body and to your sexual activity, but if being sexual is something that’s important to you, try to keep an open mind, practice acceptance and have fun.

The OASIS program, provided

by Alberta Health Services and CancerControl Alberta, is available in Calgary and Edmonton. Learn more at myhealth.alberta.ca myleapmagazine.ca FALL 2017 LEAP 35

SAUNDRA SHAPIRO OPENED COMPASSIONATE BEAUTY IN 2005

PHOTOGRAPHY BOOKSTRUCKER

36 LEAP FALL 2017

LIVING WELL

Filling a Need Compassionate Beauty is a medical boutique tailored for women in cancer treatment by JULIA WILLIAMS SAUNDRA SHAPIRO OPENED COMPASSIONATE

Beauty in 2005 after helping her best friend through cervical cancer treatment.

She remembers vividly how inconvenient and overwhelming it was for her friend to find basic cancer and chemotherapy treatment-related products in a large department store let alone products that helped her retain her dignity and sense of self.

Shapiro lost her friend to the disease, but her mission lives on. Shapiro wants women to be able to find all their treatment-related products and services in one respectul and compassionate place.

“We want to be everything that a woman needs,” she says.

“ I think that cancer is hard enough.

If we can keep them feeling normal and not like they have to give up a whole other part of themselves, then life will be a little bit easier.”

– Saundra Shapiro, owner, Compassionate Beauty

Intimate and spa-like, this medical boutique in southwest Calgary has a big pink couch, appealing product displays and private rooms. The shop sells therapeutic bath and beauty products aimed at women in chemotherapy, including the oncology-specific Lindi Skin line. There’s

a line of soft bamboo Hopecaps head scarves, Hats For You baseball caps with hair extensions, and colourful Juzo brand lymphedema compression sleeves.

About 70 per cent of Shapiro’s clients are dealing with breast cancer (other clients have different cancers or conditions causing hair loss, like alopecia), and she stocks the shop accordingly. There is an extensive mastectomy bra selection and breast forms from Amoena, as well as swimwear, sleepwear and tops. It also carries Coobie, made-in-Canada Trulife, and Anita, a speciality German brand.

Toward the back of the shop is a series of private rooms with specific functions.

One is for fitting clients with comfortable post-surgical camisoles equipped with special pockets for drains. Another room is for bra and breast-form fittings, and another is a salon-like space where women can have custom wig consultations, head shaves and ongoing wig maintenance.

In a spa room, clients receive aesthetic treatments including manicures and dry pedicures, waxing and microblading.

There’s even a room used for compression fittings as well as oncology massage.

Shapiro says one of the most important services Compassionate Beauty provides is a sense of team spirit and normalcy during a very tough journey. “I want to give [my clients] all the pretty things. I think that cancer is hard enough,” Shapiro says. “If we can keep them feeling normal and not like they have to give up a whole other part of themselves, then life will be a little bit easier.” LEAP

MEDICAL BOUTIQUES IN ALBERTA COMPASSIONATE BEAUTY 26 - 22 Richard Way SW, Calgary compassionatebeauty.com

CRIMSON LINGERIE Specializes in post-mastectomy bra fitting with products from luxury German lingerie brand Anita.

1749 - 1632 14 Avenue NW, Calgary crimsonlingerie.com

GRACEFULLY YOURS Carries mastectomy bras, swimwear, breast forms and therapeutic skin products.

6242 99 Street, Edmonton gracefullyyours.ca

FIT ESSENTIALS Edmonton’s only Amoena shop, with post-surgery camisoles, bras and swimwear.

16506 100 Avenue NW, Edmonton fitessentials.ca

VICTORIA’S ATTIC A lingerie shop with Amoena swimwear, bras, loungewear, breast forms and post-surgery camisoles. 9906 100 Avenue, Grande Prairie victoriasattic.ca

myleapmagazine.ca FALL 2017 LEAP 37

RESEARCH ROCKSTAR

DR. JOHN WALKER LEADS INVESTIGATOR-INITIATED TRIALS IN THE HOPES OF DISCOVERING MORE EFFECTIVE TREATMENT OPTIONS FOR CANCER PATIENTS 38 LEAP FALL 2017 FALL 2017

by COLLEEN BIONDI photography AARON PEDERSEN

O

ncologist Dr. John Walker took the road less travelled.

Before pursuing his dream of becoming a doctor, he spent 10 years in the lab as a Ph.D. student and postdoctoral fellow studying molecular biology and specifically inflammatory bowel disease — a very personal experience as Walker has Crohn’s. He thought a good foundation in research would prepare him well for a career in medicine.

This has turned out to be the case. For the last five years, he has not only been treating people with head and neck cancers and melanoma at the Cross Cancer Institute in Edmonton but is now also scratching that research itch by becoming involved with investigator-initiated clinical trials. “I definitely took a left turn career-wise,” admits the 43-year-old married father of three. Nevertheless, he has arrived at his desired career and has become a dedicated clinician who is also actively hunting for the next, best treatments for his patients.

As opposed to traditional clinical trials, which are driven by the pharmaceutical industry, investigator-initiated trials allow medical personnel to test their hypotheses, often ideas close to their own hearts and practises.

“They are neither better nor more effective than industry trials,” says Walker. “It just places them in a distinct class.” >

myleapmagazine.ca FALL 2017 LEAP 39

Investigator-initiated clinical trial opportunities come via a twice-yearly competition sponsored by the Alberta Cancer Foundation (the Foundation).

Trial proposals are interventional, which means participants receive specific interventions including medication or lifestyle changes. They often include previously known medications or treatments that are applied differently or in combination or used with a new patient group.

Walker has submitted two successful trial proposals (he has his fingers crossed for a third) to date.

One of them is the LATENT (Lytic Activation to Enhance Neoantigen-Directed Therapy) trial. Beginning in October, the two-year study involves 39 diverse patients whose cancers are related to chronic viral infections, such as the human papillomavirus (HPV). The most common scenario will be patients with cancers of the oral cavity or cervix. Patients will receive two drugs. Valproic acid moves the virus from a latent state to a “lytic” phase, where the virus begins to reproduce, making it more visible for treatment. Avelumab switches off a deactivation mechanism — caused by the cancer itself — and ideally restores the patients’ natural, anti-cancer immunity.

Because the safety profile and optimal dosage of each drug (in the LATENT trial) has been well established, this will be a Phase Two trial, says Walker. However, the collection of safety data — a primary goal of Phase One trials — will continue to be integrated into the process.

The LATENT proposal was vetted by a local committee, met the Cross Cancer Institute’s ethics standards and was approved

by Health Canada. Walker’s 40 LEAP FALL 2017

next duties include confirming eligibility criteria for patients, delivering therapies and keeping his trial team — a clinical trials registered nurse and a data coordinator — motivated. Nurse Shelley Sass is already a recipient of that motivation. “John’s enthusiasm for understanding these new treatments, their side effects and the mechanism as to how they come about encourages me to want to learn more.”

Walker also wears a fundraising hat. He is grateful to receive $200,000 from the Foundation for the trial and pleased to parlay that into a grant of $2.5 million from the pharmaceutical industry. This support will go a long way in helping patients across the board and will ultimately result in slower-growing cancers, remissions or even cancer-free outcomes. And the timing is critical. Traditional therapies for head and neck cancers, for example, especially metastatic cases, have been “notoriously ineffective.” Indeed, over half of Walker’s clinical caseload patients will die without new, innovative strategies.

The biggest challenge in starting trials and seeing them to fruition is time and money. It takes Walker a couple of months to come up with an idea and one month to write protocol, typically when the kids are in bed. “And there is no guarantee you will be funded,” he says.

Even an exciting job like Walker’s has boring bits. “The uncool part is filling out insurance forms, ordering prescriptions, going to meetings and dictating.”

But the cool, rock star part always prevails: improving the lives of patients with cancer and their families, one investigator-initiated clinical trial at a time. LEAP

7

QUESTIONS WITH

DR. WALKER 1. Describe what you do in 10 words or less.

I am a medical oncologist and a cancer researcher.

2. What’s the biggest misperception about what you do?

Some might think my job is a depressing one, but I meet and care for patients daily who are full of hope and courage. A diagnosis of cancer may reveal strength and resilience a person may never have known they possessed.

3. Where do you get your best ideas?

One strategy which is proving successful for me is “transmuting” an idea or theory from one setting to another. For instance, before becoming a physician I studied in a research laboratory focused on inflammatory bowel disease, examining the interaction between the microbes within the gut and the immune system. Ten years later it turns out that the same gut bacteria may influence how a person responds to their anti-cancer treatment!

Success is often being in the right place at the right time and looking for opportunities to apply existing knowledge to new questions.

4. If you weren’t a trial investigator, what would you be?

I’d like to think a retired professional hockey player, but in reality I think I would have made a decent high school science teacher.

5. What was the hardest lesson you’ve learned?

Perseverance. It was a really (really!) long road to get to where I am today, and I’ve needed a lot of support from family, friends, colleagues and mentors. But the journey was well worth it.

6. What motivates you?

I am competitive by nature (just ask the kids I coach on my 10-year-old’s baseball team!) so medicine and medical research is a good fit for me. Mostly, I enjoy the inherent satisfaction of developing a research project that addresses and answers a worthy question.

7. Why does your research matter?

It has been said that a researcher “stands on the shoulders of giants,” meaning we work to discover truth by building on previous discoveries. In that sense, if we can say that our work and research has meaning and has advanced the goal of improving the care of those living with cancer, we can all derive satisfaction from the end result.

“ Success is often being in the right place at the right time and looking for opportunities to apply existing knowledge to new questions.”

– Dr. John Walker

myleapmagazine.ca FALL 2017 LEAP 41

TRUE CALLING

A CALL TO CARE AS THE CHIEF PROGRAM OFFICER FOR CANCERCONTROL ALBERTA, NANCY GUEBERT IS COMMITTED TO MAKING EVERY PATIENT’S CANCER JOURNEY A LITTLE EASIER

by LAUREN DENHARTOG // photography JARED SYCH

EVEN WHEN SHE WAS A NEWLY GRADUATED NURSE WORKING AT ROYAL UNIVERSITY

Hospital in Saskatoon, Nancy Guebert always felt it was essential to put patients and their families first. She sees each patient with cancer as a unique individual on a personal journey.

“You have to treat each patient and family individually, and I always say, ‘There’s always a story behind that patient, there’s always a story behind that family,’” she says.

“We can be empathetic and try to be understanding but we truly will not experience what that patient is going through,” she says.

On June 12, 2017, Guebert was permanently appointed to the role of chief program officer for CancerControl Alberta. Under Alberta Health Services, CancerControl is responsible, in collaboration with its partners, to support the implementation of Changing our Future: Alberta’s Cancer Plan to 2030. CancerControl is responsible for the provision of comprehensive care at the tertiary, regional and community cancer centres, operational responsibility for cancer surveillance and registration and supporting cancer research across many parts of the cancer continuum. Guebert has filled the post, on an interim basis, since November 2015 and works in a dyad role with Dr. Matthew Parliament, interim senior medical director, CancerControl Alberta, and medical director at the Cross Cancer Institute in Edmonton. >

42 LEAP FALL 2017

NANCY GUEBERT BRINGS HER YEARS OF EXPERIENCE AS A CLINICAL NURSE TO HER NEW ROLE

myleapmagazine.ca FALL 2017 LEAP 43

As chief program officer, Guebert is responsible for the delivery of cancer services in the province of Alberta. Specifically, she’s in charge of the administrative side of cancer operations under Alberta Health Services while Parliament oversees the medical side of the delivery of cancer services. She wears many hats in her current role and brings a wealth of valuable experience from her previous roles.

“I get to do a bit of everything. I do some administration. I get to do teaching, I can support research,” she says. “It’s kind of the best of all worlds.”

Guebert says she finds motivation in many aspects of her job, including the team she works alongside, the exciting developments in cancer care and the fact that she is part of a learning organization, helping to train the next generation of researchers and clinicians working in cancer care. “To me, it’s not a job,” she says.

Raised on a farm in Birch Hills, Saskatchewan, Guebert completed both her Bachelor of Nursing and a Master’s in Continuing Education at the University of Saskatchewan.

She had always planned on a career in music, before eventually deciding to focus on nursing professionally. But Guebert still counts music as a hobby and finds time to sing, play piano and write music.

Looking back, perhaps her foray into health care was inevitable. She grew up surrounded by a family of health-care workers, including many physicians and nurses, including her mother who was a nurse. “I’ve been surrounded by such wonderful people and wonderful teachers and wonderful mentors,” Guebert says of her family.

Prior to moving from Saskatchewan to Alberta in 2001, Guebert spent many years working in cancer care and palliative care.

She’s held several prominent leadership roles in the past, including president of the Canadian Association of Nurses of Oncology, a position that allowed her to network with cancer nurses provincially, nationally and internationally.

Guebert is also a surveyor with Accreditation Canada. Guebert surveys health organizations within Canada, including 44 LEAP FALL 2017

cancer programs and health systems, and has also surveyed several international cancer programs. This is not officially a part of her role with AHS, but Guebert says the province supports her role as a surveyor and sees it as positive because it exposes her to other health systems.

Guebert says there are specific standards and criteria that cancer programs are measured against. As a surveyor, she evaluates many aspects of cancer programs, including the approach to patient- and family-centred care, quality and safety improvement initiatives and infection prevention and control. “[She] knows that we need to get the basics right to have any hope of moving forward as a high-performing program,” says Parliament, adding that Guebert is a very respected and experienced leader.

“I think part of her success does relate to having worked in a number of diverse portfolios over time, and having had to overcome obstacles to good patient- and family-focused care as an operational leader,” he says.

“But if you drill right down I think it’s

also because she still walks the talk of her days as a clinical nurse, and she does not forget that the front lines is where the care really happens. She is also incredibly enthusiastic and optimistic — invaluable traits in a challenging portfolio like cancer,” Parliament says.

Janice Stewart, senior operating officer for Peter Lougheed Centre, Southern Alberta Renal Program and Southern Alberta Transplant Program, has known Guebert for 14 years and considers her both a mentor and valued colleague.

“Nancy appreciates the contributions of the whole team and she is able to make sincere connections with staff and physicians at all levels within the organization. She has a phenomenal ability to remember people’s names and to put people at ease, which goes a long way when dealing with challenging situations,” Stewart says.

Guebert, she says, also brings impressive business skills to her current role.

“She is a strategic, systems thinker and understands system integration and the value of the patient’s perspective in their health-care journey, “ Stewart says.

NANCY GUEBERT CAREER HIGHLIGHTS

Formerly the senior operating officer at the Rockyview General Hospital and Provincial Correctional Health Services

Served as the executive director of education and corporate affairs at Saskatchewan Cancer Agency in Saskatoon

Served as an advisory member to the ministers of health and justice for the government of Saskatchewan with regards to the legislation for Advanced Health Care Directives

Guebert also believes it’s important to personally support the Alberta Cancer Foundation, the philanthropic engine for CancerControl Alberta. On June 24 she participated in the organization’s OneWalk to Conquer Cancer as well as raising funds. The event, she says, helps recognize and acknowledge the journey of cancer patients “and to acknowledge some of those whose journey has ended.”

2010 recipient of the Nursing in Excellence in Administration award from the College and Association of Registered Nurses of Alberta

2005 chair of the Canadian Hospice and Palliative Care National Conference

come with some challenges, including a five- to seven-per cent growth in demand for services each year. “I never look at the challenges, I like to think of it as opportunities,” Guebert says.

“The good news is, people are surviving,” she adds. “We have more technologies and more treatments available for patients and because of that our demand for services will increase,” she explains.

CancerControl Alberta, she says, is always

“ [Nancy] still walks the talk of her days as a clinical nurse, and she does not forget that the front lines is where the care really happens. She is also incredibly enthusiastic and optimistic — invaluable traits in a challenging portfolio like cancer.”

– Dr. Matthew Parliament, interim senior medical director, CancerControl Alberta, and medical director at the Cross Cancer Institute in Edmonton

At CancerControl Alberta, Guebert works in partnership and collaboration with other agencies to support the cancer care continuum, which includes everything from prevention and screening to palliative and end-of-life care. “The fact is, we’ve got a focused mission and a vision, we’ve got a focused task at hand and that’s what keeps us going each and every day,” Guebert says.

With an increase in the demand for services province-wide, the role does

exploring innovative ways to deliver cancer care.

“I think the other opportunity is how we can continue to provide care closer to home, so ensuring that we are fully using all of our capacity within the program, whether it’s the regional cancer centres in Medicine Hat, Lethbridge, Red Deer, Grand Prairie or our 11 community cancer centres,” she says.

In Calgary, the future of cancer care will be further supported by the new Calgary

Operationalized the first palliative care unit in Saskatoon

Holds a bachelor of nursing and a master’s of continuing education from the University of Saskatchewan

Cancer Centre, which is expected to open in 2023 and will eventually house the outpatient cancer services presently located at the Tom Baker Cancer Centre and the Holy Cross site, as well as Oncology Inpatient beds at the Foothills Medical Centre.

Asked about the future of cancer care in this province, Guebert says it’s important to keep an open mind to new research and innovation while continually working to tackle the incidents of cancer.

“We need to continue to have a strong agenda around health promotion and health prevention,” she says. This includes some pillars of prevention such as exercise, using sunscreen and covering up, not smoking, screening and following a healthy diet. “[And] making sure we can keep up with the demand around what research tells us around treatment, whether it’s radiation or chemo,” says Guebert.

At the end of the day, Guebert’s philosophy today is similar to what it was back when she was a new nurse: to help support patients and families on their individual journey.

“Our goal is to make it as easy for them as possible. To support them. To accept them for who they are, where they are,” she says.

“I may not be able to take your cancer away, but I’m going to do whatever I can to make the steps in your journey as easy as possible.” LEAP myleapmagazine.ca FALL 2017 LEAP 45

IMPACT

DARYL JOHNSON,

MIDDLE, SEATED, SHARED HIS EXPERIENCE AT THE 2017 INTERNATIONAL CLINICAL TRIALS DAY AT THE TOM BAKER CANCER CENTRE

Clinical Trials: A Personal Experience Daryl Johnson was diagnosed with prostate cancer in 1995.

An initial surgery helped alleviate his symptoms, but when things worsened in the early 2000s, he was prescribed pills and then injections every three months. By 2013, Johnson’s treatment was no longer working. Johnson was sent to Dr. Daniel Heng, a staff medical oncologist at the Tom Baker Cancer Centre in Calgary, and was invited to take part in a clinical trial that has changed the course of prostate cancer treatment. Made possible thanks in part to the generous donors of the Alberta Cancer Foundation, this trial utilized hormone pills that were easier for patients to tolerate, instead of being treated with chemotherapy right away.

Johnson accepted, and the medicine he received has been working wonders for him ever since — confirmed with check-ups twice a year and lab work every three months.

Today, at 90 years old, Johnson enjoys regular activities such as woodworking and gardening with his wife at their home in Drumheller, Alta. Johnson shares his story.

“I’ll start where I first found out I had cancer, back in ’95. I was having some trouble with my back and trouble urinating too, so the doctor sent me to the hospital in Calgary where they removed some of the prostate gland. Then a few years down the road it got bad again and they started giving me various things to slow it down, which it did.

Then in 2013, my PSA (prostate-specific antigen level), which is a check on the cancer, went up to 86 and they like to keep it at two.

They sent me to a specialist in Calgary to see about chemotherapy or radiation to slow it down. I saw Dr. Heng, and he said, ‘If you

as told to MAE KROEIS

want to, I can give you this medicine that has been made for this. It’s still in trial.’ I have to say that it was quite a relief that I didn’t have to take chemo or radiation, and less than three months later my PSA was down to two. It was working, there’s no question about it. It was doing the job.

“ I’m so very grateful for the medicine that Dr. Heng gave me and for what comes from cancer research.”

– Daryl Johnson, clinical trial patient

I’ve been taking the capsules just about five years now and I have no side effects from it at all that I know of.

That’s been really great. As far as they know it doesn’t cure the cancer but keeps it from spreading. But I’m not a guy to get worried or upset over everything. Life comes and goes, and we have to live it with what we’ve got.

About four weeks ago, they sent me into Calgary to get a scan to see if the cancer had spread and they told me they couldn’t find any anywhere. So I guess I’m really lucky. The cancer research has been really good for me. I’m so very grateful for the medicine that Dr. Heng gave me and for what comes from cancer research.” LEAP earn more about clinical trials on page 19 and page 38 L or by visiting albertacancerclinicaltrials.ca PHOTO COURTESY OF BELL MEDIA

46 LEAP FALL 2017

WHY I DONATE

Walking the Walk An Edmonton student’s long trek will bring Scotland home to her grandfather

by JULIA WILLIAMS

SARA ANDERSON WILL

walk the 54.5-kilometre West Highland trail in September, and her grandfather is excited for her. “Every time I mention it he brings out the big Scotland map he’s got and traces out the route,” she says.

Anderson’s grandfather developed a fierce love of Scotland when he began to explore his family’s genealogy. Despite his fascination with his ancestral home, the father of five never found time to visit it. “He just passed on the history and love of Scotland to the rest of the family,” says Anderson. His enthusiasm has inspired Anderson, a 26-year-old bachelor of science student at Athabasca University, to visit Scotland twice before — but this time she’s on a mission. “I wanted to bring part of Scotland back to my grandfather,” she says. >

PHOTO PAUL SWANSON

myleapmagazine.ca FALL 2017 LEAP 47

The Highland walk won’t just generate memories; it will raise funds for the Alberta Cancer Foundation in support of the Cross Cancer Institute, where Anderson’s grandfather has been receiving treatment for prostate cancer since 2009. “The Cross Cancer Institute has done so much for my family,” Anderson says. “I’ve had friends who’ve received treatment there too.”

The West Highland Trail is a footpath that runs from Milngavie, just north of Glasgow, to Fort William at the foot of Ben Nevis. The route, which tracks the banks of Loch Lomond and weaves through mountains and moorlands, is one of the most beautiful and historic in the United Kingdom. Anderson plans to bring back photos, a video diary and plenty of stories to share with her grandfather.

“ I wanted to bring part of Scotland back to my grandfather.”

– Sara Anderson

The trek will take Anderson seven days to complete, and she’ll spend much of it outside her comfort zone. She’ll need to get used to “wild” camping, which is a Scottish term for camping outside a designated campsite — only one night will be spent at an established campsite.

“Usually I’m at a campsite that at least

has an outhouse,” Anderson laughs. But her biggest worry isn’t roughing it or even ascending a notoriously steep stretch of trail called the “Devil’s Staircase,” it’s that she might hold her hiking group up — Anderson is sharing the journey with three other hikers with fundraising goals of their own. She’s determined not to slow anyone down, training with day trips in Jasper and Banff and taking free training courses on backcountry camping at Mountain Equipment Co-op.

Anderson says hers is a stubborn clan, and she’s no exception. Her ability to push through adversity has helped her to overcome leg cramps during training and to meet her fundraising goal of

THE WEST HIGHLAND WAY • 154.5 km (96 miles) • Officially opened in 1980 • The most popular trail in Scotland • Open year-round

$1,550 — $10 per kilometre. The same resilience has helped her 87-year-old grandfather continue running his farm, with the help of others, outside Edmonton throughout his cancer treatment. “He’s incredibly stubborn in the best possible way,” Anderson says. “Nobody in my family is a giver-upper. That’s kind of my inspiration when things get hard.” LEAP

Every year, more than 400 fundraising events take place in Alberta in support of the Alberta Cancer Foundation. They include personal challenges, like Sara Anderson’s trek, special celebrations, such as donations in lieu of wedding gifts, multi-team events, including the Enbridge Ride to Conquer Cancer, and more. Learn more about how to throw your own fundraising event on page 10.

48 LEAP FALL 2017

MY LEAP

Scoring on Cancer Cadence Colborn, the top fundraiser at the 2017 Ringette Scores on Cancer event, shares what inspires her to give back

by SHANNON CLEARY

IN LATE DECEMBER AND AT THE LAST MINUTE, 10-YEAR-OLD

Cadence Colborn’s ringette team registered for the 2017 Ringette Scores on Cancer event in Edmonton. The event was taking place the last weekend in January at the West Edmonton Mall, which meant Cadence and her U12 Saskatoon Thunder teammates had just one month to fundraise.

“I collected a whole pile of bottles and cans from families and friends, and I also called and emailed and texted,” says Cadence.

Pretty soon, her efforts began to snowball. Cadence’s mom, Andrea Colborn, says that within several days, Cadence received help from friends, neighbours and a local business. She raised $2,353, making her the top individual fundraiser for the tournament. Cadence’s team raised $6,341.25, contributing to the weekend total of more than $60,000.

The tournament is a combined effort of the Ringette Scores on Cancer Foundation, the University of Alberta Ringette Team and the Alberta Cancer Foundation. Proceeds benefit the Alberta Cancer Foundation in support of the Cross Cancer Institute in Edmonton.

Entering its ninth year, Ringette Scores has raised $700,000 to date.

The tournament offers plenty of prizes for top fundraisers, but Cadence had another incentive. Her cousin, who lives in Alberta, was diagnosed at age 13 with synovial sarcoma, a rare form of soft

tissue cancer. She is now 16 and cancer-free. Inspired by her cousin’s experience, Cadence says she wants to help find a cure and show other young people that they can help, too.

“It feels awesome,” she says. “You’ll help other people and make other people happy.”

Andrea says she was proud of, but not surprised by, her daughter’s determination.

“ If you can help at least a couple people in the world, then that’s a big difference.”

– Cadence Colborn, top fundraiser 2017

“Anything that she does, she gives 100 per cent,” Andrea says. “She was with me to pick up every bottle and can that we collected. She made all the phone calls and she sent all the emails.”

In June, Cadence was invited back to Edmonton to attend an awards evening for the University of Alberta Ringette Team. The evening celebrates excellence in academics and athletics, as well as the team’s charitable contributions to the community. As Ringette Score’s top fundraiser, Cadence gave a short speech and presented the cheque to the Foundation. She says it felt “amazing.”

“If you can help at least a couple people in the world,” says Cadence, “then that’s a big difference.” LEAP

PHOTO COURTESY OF ALBERTA CANCER FOUNDATION

myleapmagazine.ca FALL 2017 LEAP 49

GAME CHANGER

Powering a Multi-Day Bike Ride Since becoming the Title Sponsor for the Ride to Conquer Cancer in 2010, Enbridge has helped raise more than $60 million for the Alberta Cancer Foundation

by KARIN OLAFSON

EVERY AUGUST, NEARLY 2,000 CYCLISTS OF ALL ABILITIES GATHER

at the Enbridge Ride to Conquer Cancer start line in Calgary.

They’ve spent months training to complete the two-day, 200-kilometre charity ride that heads out and back through rural Alberta, as well as hours fundraising a minimum of $2,500 benefiting the Alberta Cancer Foundation. For Title Sponsor Enbridge, it’s not just about powering an anticipated sporting event. It’s also a chance to take action towards making a cancer-free future possible.

The inaugural Ride to Conquer Cancer took place in Toronto in 2008. That first year the ride was considered a test event, and, following its success, the ride was brought to Calgary in 2009. Today, the event happens annually in four Canadian cities — Toronto, Calgary, Vancouver and Montreal.

The Calgary-based energy company Enbridge signed on as the Title Sponsor of the Alberta event in 2010. The company also served as the official national sponsor from 2011 to 2013. The decision to become involved was easy. “Enbridge believes in contributing to the well-being of our communities and supports the quest to conquer 50 LEAP FALL 2017

cancer in our lifetime,” says Gina Jordan, community investment manager at Enbridge. “The Enbridge Ride to Conquer Cancer is dedicated to fighting all cancers and we are proud to support this work.”

Each year, hundreds of Enbridge employees get involved in the event, either as participants or volunteers.

Since 2009, more than 2,000 Enbridge employees have joined in the ride and more than 600 employees have volunteered.

For Enbridge employees, involvement is a way to show support for those affected by cancer, directly and indirectly. It’s also a chance to remember colleagues who have passed away from cancer. In 2014, breast cancer survivor Janet Holder, Enbridge’s executive vice president, Western Access, was diagnosed with an aggressive form of leukemia. She passed away in 2015 and in 2016, Holder was honoured by Team Enbridge at the ride’s opening ceremony — her bike was walked across the start line as part of the Riderless Bike Procession.

“Janet’s story highlights exactly why Enbridge supports the ride,” says Jordan. “She survived her first battle with cancer because of the treatment and research made possible through events like the ride, but her passing tells us that we still have work ahead to eradicate cancer.”

The ride has already made significant contributions to cancer care in Alberta. Funds raised are used for cancer research, prevention and screening, and enhanced care programs, and they provide patients with access to promising new cancer treatments, drugs and therapies. For example, thanks in part to funds from the ride, in 2016 alone, 927 Albertans signed up for clinical trials, which the ride helped fund, a six-per cent increase from 2015.

“We believe that the funds being raised are truly making a difference in our communities,” says Jordan.

“It’s humbling to be part of something that’s having a real impact.” LEAP

THE ENBRIDGE RIDE TO CONQUER CANCER BY-THE-NUMBERS More than 2,000 riders have ridden on Team Enbridge to date. // 14,330 riders have completed the race between 2009 and 2016. // Team Enbridge raised more than $4.4 million to date. // The ride has raised more than $60 million for the Alberta Cancer Foundation between 2009 and 2016.

PHOTO COURTESY OF THE ENBRIDGE RIDE TO CONQUER CANCER