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PM#40020055 A GROWING CONCERN Why farm-fresh local food is gaining ground with chefs Don’t believe the Internet hype about a cure MYTH BUSTERS PLUS: Social Media and Clinical Trials; Cancer and Couples; Disease-Fighting Menu Items; and more Safety Net THE CANCER IN AN ONLINE WORLD ISSUE SUMMER 2015 Cancer patients are increasingly turning to online support

Leap Summer 2015

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  • PM#40020055

    A GROWING CONCERN Why farm-fresh local food is gaining ground with chefs

    Dont believe the Internet hype about a cure

    MYTH BUSTERS

    PLUS:Social Media and

    Clinical Trials; Cancer and Couples;

    Disease-Fighting Menu Items;

    and more

    SafetyNet

    THE CANCER IN AN ONLINE WORLD IS

    SUE SUMMER 2015

    Cancer patients are increasingly turning to online support

    Together were creating MORE MOMENTS for Albertans facing cancer

    albertacancer.ca/moremoments

    000Leap-MoreMoments-FP.indd 1 2015-05-07 10:45 AMLeap_Summer15_p52-01.indd 1 2015-05-19 7:11 AM

  • TOM BAKER CANCER CENTRE Golf Classic24

    th A

    nn

    ual

    Sponsorship Opportunities Still AvailableBe a part of Calgarys premiere golf event in support of the Alberta Cancer Foundation

    September 10, 2015

    HOLE-IN-ONE

    PRIZES

    CRUISE VACATION

    2 VEHICLES

    JEWELRY AND MORE!

    Registration Deadline : August 28, 2015 Schedule:

    10:30 AM Registration Starts12:00 PM Shotgun Start Modified scramble format

    6:30 PM Dinner Banquet

    Please send inquiries to Mike Miller at [email protected]

    albertacancer.ca/tbccgolf2015

    Elbow Springs Golf Course

    000Leap-TomBakerGolf-FP.indd 1 2015-05-14 3:09 PMLeap_Summer15_p02-03.indd 2 2015-05-19 7:46 AM

  • summer 2015 3

    SUMMER 2015 VOL 6 No. 2CONTENTS

    FEATURES28 LOVERS ROCK

    A financial relief program allowed a Morinville couple to focus on recovery and each other

    32 HOPPING THE POND The United Kingdom has adopted patient partnerships more readily than North America

    37 YOU ARE WHERE YOU EAT Is local food really any healthier for us?

    42 TOP JOB After 20 years in community oncology, Wayne Enders is getting ready to retire

    46 RESEARCH ROCKSTAR Researcher tackles complications of bone marrow transplants to bring recipients relief

    DEPARTMENTS4 OUR LEAP

    A message from the Alberta Cancer Foundation

    6 FOREFRONT Mastectomies and cancer; Anti-cancer foods; Barrhead gives back; Pint-sized poets pen book; Butternut squash risotto recipe; and more

    11 NEXT GEN Young researcher is studying chemo brain

    12 BODY MIND Hypnosis has medical merits as well

    13 SMART EATS Eating well at work is about planning ahead

    14 ASK THE EXPERTS Yoga and cancer treatment; Developing bedside manner in cancer clinic staff

    27 PATIENT ENGAGEMENT Is a patient portal in sight?

    34 WHY I DONATE Cocktail party fundraiser honours memory of well-known cancer blogger

    41 CORPORATE GIVING Mundare restauranteurs make fundraising for cancer research a family affair

    50 MY LEAP Cindy Faas finds strength and camaraderie

    SUMMER SPOTLIGHT CANCER IN AN ONLINE WORLD

    42

    18

    28

    11

    COVER STORY: Mary Beth Eckersley has taken her cancer journey online

    18 REACHING OUT ONLINE Increasing numbers of cancer patients are using blogs and social media to connect with resources

    22 LIFELINES OF COMMUNICATION Sharing knowledge and information online is becoming mainstream for health-care professionals

    24 TOO GOOD TO BE TRUE Tips for patients to navigate the tricky world of online cancer myths and misinformation

    A l b e r t a C a n c e r F o u n d a t i o n

    46

    TOM BAKER CANCER CENTRE Golf Classic24

    th A

    nn

    ual

    Sponsorship Opportunities Still AvailableBe a part of Calgarys premiere golf event in support of the Alberta Cancer Foundation

    September 10, 2015

    HOLE-IN-ONE

    PRIZES

    CRUISE VACATION

    2 VEHICLES

    JEWELRY AND MORE!

    Registration Deadline : August 28, 2015 Schedule:

    10:30 AM Registration Starts12:00 PM Shotgun Start Modified scramble format

    6:30 PM Dinner Banquet

    Please send inquiries to Mike Miller at [email protected]

    albertacancer.ca/tbccgolf2015

    Elbow Springs Golf Course

    000Leap-TomBakerGolf-FP.indd 1 2015-05-14 3:09 PMLeap_Summer15_p02-03.indd 3 2015-05-19 7:46 AM

  • 4 summer 2015

    TRUSTEES

    Angela Boehm, Chair Calgary

    Gary Bugeaud Calgary

    Steven Dyck Lethbridge

    Paul Grundy Edmonton (ex-officio)

    Jordan Hokanson Edmonton

    Katie McLean Calgary

    John J. McDonald Edmonton

    Andrea McManus Calgary

    Brent Saik, Vice Chair Sherwood Park

    Sandy Slator Edmonton

    Greg Tisdale Calgary

    myleapmagazine .ca

    alberta cancer foundationMessage

    Were Changing to Better Serve AlbertansIts true: change is the only constant. At the Alberta Cancer Foundation, that saying fits us well. As we usher in a new summer season, we look back at how far weve come the last few years. In 2011, we added a new CEO to our roster and had a new sense of urgency to make life better for Albertans facing cancer. At the time, we already had the distinction of being the provinces largest philanthropic investor in cancer research, investing millions in research, enhanced care, prevention and screening every year.But we wanted to do more. We focused on impact investing, where

    decisions about what to fund are based not only on scientific or academic considerations, but also on the possible outcomes for patients and the time frame for seeing results. The goal: a shift in culture from a fundrais-ing body to one that took an active role in achieving results by helping patients, researchers, clinicians and industry work together to do things in a new way. So we developed a framework to measure the impact of various initia-

    tives and to understand how to re-evaluate them on an ongoing basis. We asked ourselves, would an initiative potentially benefit a large part of the population? Or would it have a big impact on a smaller number of peo-ple? How many lives and how much money could be saved if various types of cancers were detected earlier? How much would it cost the health-care system to invest in new diagnostic technologies? What are the investment opportunities that resonate with donors? How should

    risks, such as failure to get results, be understood and measured? This may sound like a logical way to oper-ate, but traditionally it wasnt happening to that level of detail in most philanthropic organizations.We are already noticing results. One example is in

    the area of personalized medicine for treating breast cancer. Through its selection process, the foundation is investing in research on biological markers of the dis-ease that aims to understand which treatments will

    work best for cancer patients with a particular biomarker. It will also pro-vide appropriate treatment to those patients who will benefit and provide more appropriate treatments to other patients, avoiding unnecessary treatments, improving their quality of life. We are also listening to the people who know cancer best: the patients.

    Our new patient partnership strategy means we rely on patients to help us understand how treatments work in real clinical practice with real people. You can read more about how that might work on page 32.So yes, change can be a good thing and we will continue to embrace it

    as long as it means we are making life better for Albertans. We cant wait to share that progress with you. Read the full story about our framework here: upfront.pwc.com/

    trust/695-deep-impact

    Myka Osinchuk, CEO Angela Boehm, ChairAlberta Cancer Foundation Alberta Cancer Foundation

    Our new patient partnership strategy means we rely on patients to help us under-stand how treatments work in real clinical practice with real people.

    Leap_Summer15_p04-05.indd 4 2015-05-21 10:21 AM

  • summer 2015 5

    SUMMER 2015 VOL 6 No. 2

    A l b e r t a C a n c e r F o u n d a t i o n

    TOGETHER WERE CREATING MORE MOMENTS FOR ALBERTANS FACING CANCER

    Donate today at albertacancer.ca

    ALBERTA CANCER FOUNDATIONEDITOR: PHOEBE DEY

    CALGARY OFFICESuite 300, 1620 - 29 Street NWCalgary, Alberta T2N 4L7

    PROVINCIAL OFFICE710, 10123 - 99 Street NWEdmonton, Alberta T5J 3H1Toll-free: 1-866-412-4222Tel: [email protected]

    VENTURE PUBLISHING INC.PUBLISHER: RUTH KELLYDIRECTOR OF CUSTOM CONTENT: MIFI PURVISMANAGING EDITORS: LYNDSIE BOURGON, SHELLEY WILLIAMSONART DIRECTOR: CHARLES BURKEASSOCIATE ART DIRECTOR: ANDREA DEBOERGRAPHIC DESIGNER: BEN RUDE PRODUCTION MANAGER: BETTY FENIAK SMITHPRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVERWEB & SYSTEMS ARCHITECT: GUNNAR BLODGETTDISTRIBUTION: KAREN REILLY

    CONTRIBUTING WRITERS: Robin Brunet, Sydnee Bryant, Linda E. Carlson, Lisa Catterall, Caitlin Crawshaw, Jessica Dollard, Elizabeth Hames, Robbie Jeffrey, Jacqueline Louie, Shelley Newman, Samus Smyth

    CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Bookstrucker, Buffy Goodman, Claudine Lavoie Photography, Erik Mercier, Heff OReilley, Joey Podlubny

    ABOUT THE ALBERTA CANCER FOUNDATIONThe Alberta Cancer Foundation is Albertas own, established to advance cancer research, prevention and care and serve as the charitable foundation for the Cross Cancer Institute, Tom Baker Cancer Centre and Albertas 15 other cancer centres. At the Alberta Cancer Foundation, we act on the knowledge that a cancer-free future is achievable. When we get there depends on the focus and energy we put to it today.

    Leap is published for the Alberta Cancer Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: [email protected]

    The information in this publication is not meant to be a substitute for professional medical advice. Always seek advice from your physician or other qualified health provider regarding any medical condition or treatment.

    Printed in Canada by Transcontinental LGM. Leap is printed on Forest Stewardship Council certified paper Publications Agreement #40020055 ISSN #1923-6131Content may not be reprinted or reproduced without permission from Alberta Cancer Foundation.

    Leap_Summer15_p04-05.indd 5 2015-05-19 7:45 AM

  • myleapmagazine .ca6 summer 2015

    Fundraiser for cancer centre brings in phenomenal total

    University of Alberta researcher Andrew Mason proves long-contested link

    Bowling for Cancer

    Sticking to It

    Every January, the Westlock Bowl bowling alley holds a month-long fundraiser called Bowl for Cancer, where league and youth bowlers collect pledges. This year, the fundraisers brought in more than

    $44,000, in support of the Barrhead Community Cancer Centre, run through the Alberta Cancer Foundation. Carolyn Kohlsmith, Westlock Bowls owner, says she wanted to use the donations raised during the event in a local setting. Kohlsmith announced the tournaments success at a Pink Party, where she also noted that the event had raised $105,000 over the last four years. When you consider the phenomenal total, you

    then have to realize the overwhelming amount of dedication and effort shown by you guys, she told the bowlers.

    Andrew Mason, a researcher and professor at the University of Alberta, held fast to a theory that many over the years have tried to disprove. His commitment has paid off this winter, he published a paper that sets him well on his way to proving a long- controversial point. For more than a decade, Mason has

    been working to identify the connection between human betaretrovirus infec-tion (HBRV) and a liver disease called primary biliary cirrhosis (PBC). The dis-ease is one that affects the bile duct in the liver, and Masons research shows that HBRV is commonly present in the cells of patients with PBC. There has also been some evidence of HBRV being linked to breast cancer. The idea that HBRV could cause a

    form of cancer was first introduced in the 1970s, but the technology at the time could not track the low levels it presented with, and the scientific com-munity couldnt agree on if it was a true infection. Research and discussion into

    the links between HBRV and breast can-cer stalled in the 1980s, when HIV emerged. As well, other liver disease researchers have been unable to detect HBRV and claimed no connection with PBC. This is often how science works, Mason says. So we used next genera-tion sequencing to show the virus insert-ed into the DNA of damaged biliary cells, and its hard to do that ... But what else do you do? You dont give up.Masons work has also found that

    patients with liver disease are respon-sive to anti-retroviral therapy. His researchs publication is just one step along the way to proving the link. His team is now completing a randomized controlled trial that they hope will help lead to further proof of the link. All the answers are still slow coming, but Masons already proved hes a patient researcher. Funding for his research was partly provided through the Alberta Cancer Foundation, the Canadian Liver Foundation and Canadian Institutes of Health Research.

    Garth Kohlsmith, left, is joined by Linda Knapp, Amber Williams, Donna Nelson and Carolyn Kohlsmith at the Pink Party announcing the Bowl for Cancers fundraising total.

    Forefront prevent, treat, cure

    Leap_Summer15_p06-11.indd 6 2015-05-20 1:35 PM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 7

    Michael and John Brown pen a book for pancreatic cancer

    Favourite foods known to combat cancer

    Never too Young Top 5

    After their Great-Aunt Ruth was diagnosed with pancreatic cancer, Michael and John Brown wanted to do something to make a difference. Michael, who is nine years old, decided writing a book that they could sell to raise money and awareness surrounding pancreatic cancer research would be the ticket. So he put the words together, while his 12-year-old brother John gathered the art for the book. They ended up creating Poems of the Spiritual World, a

    collection of Michaels poems and Johns images of nature. The poetry is mostly about Michaels experiences in the natural world, including time in nature and family memories. For example, in his poem Fire is..., Michael writes: Fire is the warmth of the heart./It burns until the end. The art that John gathered is mostly environmental, as well. The brothers began selling the books to neighbours and

    classmates around Christmas 2014. People think its so good, says John. I was surprised that we raised so much money. The first run of books sold out and the brothers have raised more than $2,700 in total. It was definitely John and Michaels initiative, says their

    mother, Catherine Bell. Some of that support came from their schoolmates, who spread the word around their school. It felt really good because its for the Alberta Cancer Foundation, and for people to know that we should start doing more research for pancreatic cancer, says Michael.Recently, the family learned that their great-aunts

    pancreatic cancer is now in full metabolic remission. She was really thrilled with the outpouring of love and support from Michael, John and so many other people, says Catherine.

    With cancer rates increasing at an alarming pace, its worth taking a look at diet as a possible countermeasure. Heres a sam-pling of healthy ingredients with cancer-prevention properties, and a little about what makes these super foods so, well, super.

    Soy. From soybeans to soy sauce, miso to tofu, soy contains isoflavones, which are anti-cancer compounds. Experts recom-mend about 50 grams per day of whole food, like edamame or dry roasted soybeans. There may be some links between soy and a reduction in breast and prostate cancers, especially if consumption starts before puberty.

    Garlic. Sure, they help with warding off vampires, but plants in the garlic or allium family (including leeks, shallots and chives) are thought to play a role in keeping away digestive system cancers such as esophageal, stomach and colon cancer. In China, one recent study showed that people who con-sumed small amounts of garlic and onions had three times a greater chance of developing stomach cancer than those who consumed more of it.

    Cabbage. From kale to broccoli and Brussels sprouts to cauliflower, plants from the crucifer family have long been lauded for their medicinal abilities. Studies show diets rich in cruciferous vegetables are linked to a drop in the risk of certain cancers, including breast, bladder, lung and gastrointestinal, as well prostate cancers. To bring out the best in their anti-cancer potential, cruciferous vegetables should be lightly cooked and thoroughly chewed.

    Berries. Most berries (including raspber-ries, strawberries and blueberries) are a great source of several classes of polyphe-nols, which possess their own anti-cancer potential. Recent data shows that molecules found in blueberries, for example, might even slow the growth of tumours.

    Tomatoes. Initially discovered by the Spaniards who conquered Mexico in the 16th century, tomatoes were then brought back to Spain, and later taken to Italy. Recent findings indicate that Lycopene, a pigment and compound responsible for the tomatos bright red hue, is tied to its anti-cancer potential. Cooking tomatoes in oil or vegetable fats maximizes their anti-cancer properties.

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    Leap_Summer15_p06-11.indd 7 2015-05-20 1:35 PM

  • myleapmagazine .ca8 summer 2015

    Does your desk job leave you feeling stiff and uncomfortable? Try these easy stretches to break up your day and leave you limber

    and ready to tackle anything your boss throws at you.

    Seven Winning Stretches

    1 2

    3

    4 5

    6 7

    Hands On: With your palms together in front of your chest and fingers pointed up, gently push your hands down and hold for 10 seconds. Do this stretch while standing.

    Hands Down: With your palms together and your fingers pointing down, gently pull your hands up, holding for 10 seconds. Do this stretch while standing.

    Within Reach: While sitting in a chair, extend your arms while interlocking your fingers, turning your palms away from you. Hold stretch for 10-20 seconds.

    Neck and Neck: Standing with your arms behind your back, grab your wrist with your opposite hand and pull, while tilting your head to one side. Reverse and repeat on other side of neck and wrist.

    Lean on Me: While standing, place your arms bent behind your head, grabbing opposite elbows. Lean from side to side, holding each stretch for 8-10 seconds.

    Up and Away: While standing with your fingers interlaced and above your head, stretch palms upward and hold for 10-15 seconds.

    Shake, Rattle and Roll: Standing with your arms at your sides, roll your shoulders up and down, turning frontwards and then backwards. Repeat three times, holding for three to five seconds each.

    Leap_Summer15_p06-11.indd 8 2015-05-19 7:44 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 9

    INGREDIENTS: 1 small butternut squash, peeled and

    chopped 1/2 a large onion, chopped A handful of fresh parsley, chopped

    (plus more for topping) 4 to 5 cups water or low-sodium

    vegetable broth 1 cup short grain risotto rice 1/2 cup fresh pomegranate seeds

    (optional) 1 Tbsp olive oil

    DIRECTIONS: Heat the water or broth in a small pot. In a separate large pot, heat the oil and add butternut squash. Cook over medium heat for about seven minutes and add the chopped onion and parsley.

    Cook another five minutes, lowering heat if necessary. Add a splash of water if the vegetables stick.

    Add the rice to the vegetables and stir well. Cook for about two or three minutes. Add water, a cup at a time, stirring well until the water is completely absorbed before adding the next cup. (You may not need to add all five cups of water.)

    Cook the rice until it is al dente and the squash is fully cooked. Season the mix with salt and pepper to taste. Top with pomegranate seeds and parsley.

    Nutritional Information (per serving): 173 calories; 2.43 grams fat; 3 grams protein; 34.6 grams carbohydrates; 2.55 grams fibre; 0 milligrams cholesterol; 13 grams sodium.

    Butternut Squash RisottoMakes six servings.

    This creamy butternut squash risotto from @TheTable (MD Anderson Cancer Center) can be soothing for those with mouth sores.

    Angelic AscentYou could say two-time cancer survivor Bryan Mudryk has angels watching over him. And youd be right.

    Created by one of his best friends, Bryans Angels was founded in 2011 by Sheyanne Levall, who rallied Mudryk sup-porters to raise money in his honour, and for others touched by cancer. The goal that first year was to see participants climb 200 sets of 202 steps, both ways. The Angels completed 220 sets and raised $22,000. The group, which has grown to 25 mem-bers from 11, was working to complement Mudryks own fundraising, for his annual golf tournament in Boyle, Alberta.

    For the past four years, the Angels have hosted A Night with Bryans Angels red-carpet party at the Lexus dealership in west Edmonton, and a stair-climb chal-lenge on the bank behind Edmontons Royal Glenora Club, both to raise funds for the Cross Cancer Institute via the Alberta Cancer Foundation. The Angels events

    have taken off, raising nearly $300,000 in the groups five-year lifespan.

    This years fundraising goal was $75,000, for which Bryans Angels set out to climb a combined 1,000 sets of stairs in exchange for pledges at the event in early June. It started at 9 a.m. and we had 25 angels climbing, says Levall. Mudryk also flew in for this years Lexus red-carpet soiree, which was also held in early June.

    Its been so inspiring watching Bryan do everything that hes done, says Levall. It truly was just an opportunity to help him reach his goal and make a difference. Once we started seeing the difference our money was making, as one of the Angels Claudine [Lavoie] said, it filled a void I didnt know I had. Our motto is that together we will make a difference one step at a time.

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    Leap_Summer15_p06-11.indd 9 2015-05-20 2:01 PM

  • myleapmagazine .ca10 summer 2015

    More patients are opting for full mastectomies according to a new study

    Making the ChoiceA new study has found that many breast cancer patients who are eligible for lumpectomies are instead choosing to undergo full mastectomies. The study was presented at the annual meeting of the American Surgical Association and focus-es on women who were diagnosed with triple-negative breast cancer.

    In it, the researchers found that, while lumpectomies were successful in more than 90 per cent of patients who were eligi-ble for them after chemotherapy, an increasing number of women chose to have the entire breast removed instead. The lead researcher Mehra Golshan, director of breast surgical services at the Dana-Farber/Brigham and Womens Cancer Center in Boston, says in general surgeons will opt for breast-conserving options in treatment.

    Couple gives back from nuptials Womens walk a success

    Wedded Gifts Steps of HopeWhen Melissa Mercer married the love of her life, Cory, two years ago she just knew she wanted to do it differently. And anyone who knows her well would probably expect as much.

    Thats why the Provost teacher decided to forgo the tradi-tional parting favours for her guests and donate the money to the Alberta Cancer Foundation benefitting the Cross Cancer Institute instead.

    She and her husband, their family members had both recently been touched with cancer. They just thought, wedding favours are not as meaningful, but a gift from our guests on behalf of this great cause would be, says Lindsay Gilbert, manager of stewardship with the Alberta Cancer Foundation.

    Gilbert says the Alberta Cancer Foundation would like to remind people, with weddings and other special occasions coming up this summer, it is possible to donate to cancer research like Mercer did. In return, brides and grooms can net wedding web pages or place cards at their nuptials alerting guests that they have chosen to donate some of their wedding money this way. For more details about donating from your occasion via the Alberta Cancer Foundation, visit: albertacancer.ca/gift-in-honour

    Iqaluit Mayor Mary Wilman was among a group of 10 walkers call-ing itself The Women in Action this May, as they trekked 70 kilometres over two days and rough terrain to raise money for breast cancer. Despite scores of aching muscles and blisters, the group arrived in Igloolik on the evening of May 5 a day earlier than they expected. The guides travelling with the women had estimated it would take the participants five to seven days to complete the snowy trek, the groups third bi-annual event.

    Commissioner of Nunavut Edna Elias led the group, which had to contend with knee-high and blowing snow, making the trek slow going at times. This is the third Walk of Hope with fundraising benefitting the Cross Cancer Institute via the Alberta Cancer Foundation. Past walks have raised more than $180,000 for breast cancer research all told, while this years walk has raised $50,000. The goal for 2015 is $100,000. To donate, or for more information, visit: albertacancer.ca/ womeninaction2015

    Mayor Mary Wilman

    Leap_Summer15_p06-11.indd 10 2015-05-19 7:44 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 11

    With two neuroscientists as parents, Anna Kovalchuk did not have to think long or hard about her own career path.

    The daughter of Drs. Olga and Igor Kovalchuk, respected neuroscience researchers and professors in their own right at the University of Lethbridge, Anna comes by her love of science and cancer research honestly. (Ukraine-born Olga was featured in the sum-mer 2010 issue of Leap, for her work studying Chernobyl and radiation).I have been exposed to quite a lot of cancer research and have heard my mom talk-ing about her work. I was also exposed to a lot of other supervisors who were interested in this. It just made me believe that this is what I would like to do, says Anna, who is working under Dr. Bryan Kolb at the U of L for her masters project, which examines the effects of chemo-therapy on the brains of mice.

    Now its the 23-year-olds time to take the spotlight, as the 2014 Cyril Kay studentship recipient. Established in 2003, the studentship created in Dr. Cyril M. Kays name via the Alberta Cancer Foundation has long been given to top graduate students with bright futures in cancer research.

    These are exceptional students who are interested in medical research, in this case related to cancer, says Kay, who helped establish the Alberta Cancer Board and is a Professor Emeritus of biochemistry at the University of Alberta. The projects run through the entire continuum of cancer research, all the way from studying molecular mechanisms to prevention, detec-tion and diagnosis, treat-ment and pall iat ion. They are judged by an expert panel, and these are the number one students.

    Anna says her work on the $55,000 student-ship, which she began in May 2014, is a continuation of her previous studies under Kolb, as an undergraduate, on the effects of radiation on mice. It seemed like the logical step to take next, she explains.

    Her findings have already shown gains. We wanted to see what effects mice would experience after being treated with these two chemotherapy agents. One of them (MMC, or Mitomycin C) led to sex and brain- region specific changes in the gene expression of these mice. We were looking at the hippocampus and their pre-frontal cortexes and we are seeing that there were

    differences between the two drugs and there were also differences between the sexes as to what was going on at the molecular level.

    Anna says she hopes her work will help us understand why people show negative side effects from chemotherapy. We wanted to see what kind of genes are being expressed and what pathways they belong to, so that when we see whats going on at that level we can understand whats going on with the chemo brain phenomenon and why people are experiencing deficits in attention. With this understanding, we will be able to prevent

    people from having these post-chemotherapy effects.After completing her masters degree, Anna hopes to follow in her folks footsteps

    with a PhD from the U of L, which she hopes to complement with a medical degree from the University of Calgary. Its close to home and its a nice research university, she explains. In the meantime, she will use the $1,500 stipend from her award to attend a conference in New Orleans, and complete her masters, of course.

    The importance of the award, and having it in his name, is not lost on Kay. Very often grants are not easy to get, and its important to have this kind of money for sup-port, he says. This is the next generation of researchers. I am personally very grate-ful that the Alberta Cancer Foundation created this award all of these people are going to make wonderful contributions to the fight against cancer.

    BY SHELLEY WILLIAMSON

    LIKE MOTHER, LIKE DAUGHTERSecond-generation neuroscience researcher hopes to find answers for chemo brain phenomenon

    QUICK STUDY: Cyril M. Kay studentship recipient Anna Kovalchuk inherited her keen interest in research and oncology from her parents, who are both university professors.

    I am personally very grateful that the Alberta Cancer Foundation created this

    award all of these people are going to make wonderful contributions to the fight against

    cancer, says Dr. Cyril M. Kay.

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    Leap_Summer15_p06-11.indd 11 2015-05-20 1:35 PM

  • myleapmagazine .ca12 summer 2015

    When you think about hypnosis, the image that arises for many people is the stage hypnotist: a shady showman in a black cape staring deeply into your eyes or swinging a pendulum to get you to do embarrass-ing things you normally wouldnt do. The elements of this kind of gimmick typically include going into a trance and losing control over your actions, being at the mercy of the all-powerful hypnotist and perhaps having no memory of it afterwards.

    In contrast to this, medical hypnosis is actually pretty mundane. Its defined as a natural state of aroused, attentive focal concentration coupled with a relative suspension of peripheral awareness aimed at achieving symptom relief. What does this mean? Aroused, at-tentive focus means you are wide awake and concen-trating very hard on one object of awareness often the words of the hypnotist. This is coupled with a sus-pension of peripheral awareness, which means being absorbed and not noticing much of what else is going on around you like watching a good show on TV. The reason for this is to achieve symptom control, or in other words, to feel better. Its not just for fun; there is a purpose and an objective.

    Another definition describes medical hypnosis as an agreement between a person designated as the hypnotist and a person designated as the client to participate in a psychotherapeutic technique based on the hypnotist providing suggestions for changes in sensation, perception, cognition, affect, mood or be-haviour. Thats basically what happens in a hypnosis session: the hypnotist uses various methods of induc-ing attentive focal concentration, then makes sugges-tions that the client will, for example, feel less or no pain, sleep better, quit smoking or reduce nausea.

    The idea is to induce a highly relaxed state in which the clients conscious and unconscious mind is open to therapeutic suggestion. However, the exact mech-anism by which hypnosis works is still unknown. One things for sure: the hypnotist is not controlling your mind and cant make you do something you dont al-ready want to do.

    Indeed, there is now ample evidence that hypnosis works to help control some cancer symptoms. A re-view that explored studies surrounding hypnosis and

    Altered State

    BY LINDA E. CARLSON

    With medical merits from nausea reduction to pain relief, hypnosis is not just a stage gimmick

    making positive connectionsBody Mind

    cancer patients published between 1999 and 2006 concluded that hypnosis is an effective means of reducing pain and anxiety without side effects, while allowing patients to play an active role in their comfort and well-being. A more recent review in 2013 summarized the use of hypnotherapy in cancer prevention, treatment and survivorship. It concluded that there is evidence that hypnosis can be helpful in managing distress in women undergoing invasive diagnostic tests for breast can-cer, and for other diagnostic procedures such as lumbar puncture or bone marrow aspiration, particularly in children.

    During cancer treatment, one area with the most evidence for hypnosis efficacy is for managing nausea and vomiting, side effects of chemotherapy drugs. Pre-liminary studies have also investigated its efficacy in treating fatigue related to radiation therapy, hot flashes and other menopausal symptoms in breast cancer survivors, showing potential for benefit.

    In general, the evidence for using hypnosis for the treatment of pain and nausea in cancer care is strong, but other areas require further trials. If you are interest-ed in trying hypnosis for any of these symptoms, contact the psychosocial and supportive care departments at the Tom Baker Cancer Centre or Cross Cancer Institute, as some of the counsellors are trained in hypnosis for symptom manage-ment. Be sure any therapist you see is a member of the Canadian Federation of Clinical Hypnosis Alberta Society (clinicalhypnosis.ca/ab_index.html), which guarantees they have the proper training.

    Leap_Summer15_p12-13.indd 12 2015-05-19 7:39 AM

  • Did you know that employees spend about 60 per cent of their waking hours at work and eat at least one meal while on shift? This means that making healthy food and drink choices at work can have an impact on health and energy levels. Use the tips below to help you be fuelled and ener-

    gized for your workday, whether you pack your meals from home or not. As a rule of thumb at each meal, aim to have three to four of the food groups from the website, Eating Well With Canadas Food Guide (hc-sc.gc.ca/fn-an/food-guide-aliment/index-eng.php).

    Break the FastStart your workday with a healthy meal to help boost your nutrient intake, energy and memory. This can also help you manage your weight and possibly improve your eating habits during your shift. If you dont have an appetite when you first wake up, try starting with one or two foods at a time. Here are examples: Small whole grain muffin, barley, quinoa or oat porridge Lower fat cheese, milk or plain yogurt Hard-boiled egg or nut butter Apple, banana or carrots

    Lunch, Anyone?Try one of these new ideas to keep things exciting and healthy: Lunch Bowl: Brown rice or quinoa, red peppers, avocado, salsa, cheese and black beans or chicken are always great options. Snazzy Salad: Arugula, strawberries, pears, goat cheese and almonds or pecans. Drizzle with balsamic dressing. Add a whole grain bun and voila! This and That: Greek yogurt, whole grain crackers, hard-boiled egg and a piece of fruit can spice up lunchtime.

    Snack Smart If you choose to snack throughout the workday, try to opt for: Whole grain crackers Raw vegetables Small can of tuna

    Karol Sekulic is a registered dietitian with Alberta Health Services who has expertise and interest in the areas of weight management and nutrition communications.

    Dinner is ServedIf eating out with co-workers, choose restaurants offering healthy choices. Once there, try to: Reduce the serving size by asking for a half-portion, share with others or save the leftovers for another meal. Choose dishes that are steamed, grilled or roasted. Order your sauces and dressings on the side and use only small amounts of these. Order vegetables or a salad as a side dish.

    Rethink That DrinkDrinks with added sugar, such as coffee with syrups or regular pop, add extra calories and do not help you feel full. Here are some tips for choosing healthy drinks: Drink water throughout the day: Bring a water bottle to work to stay hydrated throughout the workday. Lighten up your coffee or tea: Reduce the cream and sugar you add to your coffee or tea. Consider switching to lower fat milk. Shrink your drink: If you have beverages that contain sugar or fat (like soft drinks, specialty coffees, sports drinks or energy drinks), choose a smaller size. Meet your fluid needs: Get the recommended nine to 12 cups (two to three litres) for adults of fluids per day. Water, milk, tea and coffee count towards this. Remember that adults should limit caffeine to no more than 400 milligrams per day. This is equal to two to three cups of coffee (550-750 millilitres) of fluid per day.

    Remember that making healthy choices at meal and break times is important to staying fuelled throughout your shift. To promote healthy eating at work with your co-workers, participate in a fun four-

    week free healthy eating challenge! Visit albertahealthservices.ca and enter healthy eating challenge toolkit in the search box to find everything you need to run a healthy eating challenge at work.

    A l b e r t a C a n c e r F o u n d a t i o n summer 2015 13

    BY KAROL SEKULIC

    On the MoveEating well at work is a matter of planning ahead and choosing the right foods

    food for lifeSmart Eats

    Leap_Summer15_p12-13.indd 13 2015-05-19 7:39 AM

  • myleapmagazine .ca14 summer 2015

    Your core consists of pelvic floor muscles, abdominal muscles, the diaphragm, deeper-layer back muscles and even the muscles that run along your spine to help it keep upright.According to Patricia Maybury, the owner of Calgarys

    Fitness Table core strength studio, strengthening your core leads to lots of benefits, like: Flat, strong low abs (and the ability to pull them in, not just zip them into your jeans) Decreased lower back pain Better posture, which improves your energy and mood (and even makes you appear taller and more confident)

    What are the benefits of doing core-only exercises, and what should I start with?

    Leap spoke to Dr. Peter Craighead, the Tom Baker Cancer Centres medical director and the department head of oncology for Calgary, about what makes the best cancer centre staffers.To care for cancer patients is truly a blessing and a privilege, and

    we get so much more from this experience than our patients, Craighead says. Yet it takes special people to ensure that patients are heard and cared for, which should drive us to consider how to recruit people, and how to develop them. Craighead says it comes down to keeping with a culture of giving back, and that he likes to refer to Nelson Mandelas concept of Ubuntu whenever theres a question about what to look for in staff:

    A person with Ubuntu is open and available to others, affirming of others, does not feel threatened that others are able and good, based from a proper self-assurance that comes from knowing that he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed. Nelson MandelaOur major role as cancer centres is to instill hope in our patients

    and families, adds Craighead, noting most patients want to be heard, understood, and cared for, especially when the outcome is not good. Potential staff members who do not demonstrate this understand-ing should not be considered for employment, he says. As a rule, he and his colleagues look for team players as cancer care is, at best, collaborative. Our ability to develop people who are effective within teams is a predictor of whether we will succeed in our mandate to provide integrated care or not, he explains. Potential staff who wont work well within teams should not be considered.Once you have the right types of players in place, says Craighead,

    its important as administrators to nurture people who want to give back, as leaders we have to invest so that those being helped feel valued, he says. It takes a concerted effort on our part as leaders to develop the right skills in our people, and to remind people that in return we expect them to give back to patients, people around them, and to their families.

    The nature of work in a cancer centre must be so difficult. How do you find staff members who are passionate about helping others?

    KNOWLEDGE IS POWERWe brought your questions to medical and fitness experts about staffing a cancer centre, the benefits of core exercise and practising yoga during cancer treatment

    BY LYNDSIE BOURGON AND SHELLEY WILLIAMSON

    a resource for youAsk the Expert

    Leap_Summer15_p14-15.indd 14 2015-05-19 7:37 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 15

    Susan Bocchinfuso is a physical therapist and registered yoga teacher at Oncology Rehab Calgary. She lauds yoga as a great tool in helping manage cancer treatment side effects, but suggests proceeding with caution to avoid injury or further discomfort. The ancient Indian practise of meditation, breath work and poses has physical and mental benefits that help with weak or stiff muscles, decrease stress and increase your general sense of well-being, she says. But it can also be a great way to injure yourself if you are not careful.

    Knees, wrists and the spine are three of the most common areas prone to injury in the general population. Almost everyone has experienced back pain of some type at one time or another, Bocchinfuso says. Protecting your back in yoga class after cancer treatments should become your number one priority. Hormone treatments can make your vertebrae weaker and, in some cases, more prone to fractures. To that end, she advises yoga practisers keep a straight back during bends, for starters. You may not be able to bend as far, but you will be doing your back a world of good.

    To avoid injury to wrists, Boccinfuso suggests displacing weight evenly over your hand, and avoid dumping onto the wrist with moves like downward dog. Ideally the thumb side of your wrist should have more weight than the pinky side. If you are experiencing pain and tingling in your fingers after chemother-apy treatments you need to pay special attention to your form, Bocchinfuso explains. Altered sensation will make it harder for you to figure out proper wrist alignment. Try this to ensure you are in the right position: when you are in downward dog you should be able to lift the pinky side of your hand off the mat.

    Since doing yoga is one of the few times in our lives we reach our arms above our head, its important to stretch your shoulders with caution, especially if you have had radiation therapy for breast cancer, says Bocchinfuso. Although yoga helps lengthen tight muscles, forcing irradiated tissue to stretch too far too fast can cause micro-trauma to the area, which will impede healing.

    I have cancer and am in treatment. Can I continue my yoga practise?

    Ask our experts questions about general health, cancer prevention and treatment. Please submit them via email to [email protected]. Remember, this advice is never a substitute for talking directly to your family doctor.

    Improved mobility in day-to-day activities and in your athletic performance

    Maybury says breathing is where core strength begins: Lying down on your back, with one hand on your chest, and one hand on your belly, take a deep breath in. Notice where the breath was directed? If it went into your chest, then the diaphragm got stuck and wouldnt let the breath move down, she says. Try again and see if you can breathe into your bot-tom hand instead of the top one.

    She continues: On the exhale, try to make your waist long and small, using your transverse abdom-inis wrapping like a corset. Once youve mastered that lying down, try doing it in different positions without the feedback from your hands. Try it during an activity like walking or golfing, and see if you can still activate your diaphragm while you are in motion.

    Leap_Summer15_p14-15.indd 15 2015-05-20 1:37 PM

  • To learn about volunteer opportunities please email [email protected].

    LETS DRAG CANCER THROUGH THE MUD! Join us on Saturday, August 15, 2015 at Sunridge Ski Area for the 3rd annual Down & Dirty 5KM Obstacle Course

    benefiting the Alberta Cancer Foundation.

    Challenge yourself (and your laundry detergent) by registering online today at albertacancer.ca/downanddirty2015.

    Join us for the 7th Annual Climb of Hope Run. All proceeds will benefit the Alberta Cancer Foundation and help make life better for patients and their families at the Cross Cancer Institute.

    5KM RUN or 3.5 KM WALK LOUISE MCKINNEY RIVERFRONT PARK SATURDAY, SEPTEMBER 12, 2015

    REGISTRATION VOLUNTEERING DONATE

    CLIMBOFHOPERUN.CA

    7 T H A N N U A L

    Leap_Summer15_p16-17.indd 16 2015-05-19 7:36 AM

  • 18 REACHING OUT ONLINE Increasing numbers of cancer patients are turning to blogs, social media and online support groups for help

    24 TOO GOOD TO BE TRUE The Internet is full of information about cancer, potential treatments and so-called miracle cures. Heres how patients can navigate the tricky world of myths and misinformation

    22 LIFELINES OF COMMUNICATION Medical and f itness professionals are taking their expertise online

    I

    SPECIAL REPORT: CANCER IN AN ONLINE WORLD

    n sickness and in health, the Internet has changed communication. Cancer patients, doctors and researchers are forging connections online that break boundaries through social media, blogging and online forums. This issue of Leap

    considers how the Internet is changing cancer diagnosis, care and treatment on all steps of the cancer journey.

    A l b e r t a C a n c e r F o u n d a t i o n summer 2015 17

    Leap_Summer15_p16-17.indd 17 2015-05-20 1:36 PM

  • myleapmagazine .ca18 summer 2015

    Increasing numbers of cancer patients are turning to blogs, social media and online support groups for help

    T

    BY CAITLIN CRAWSHAW / PHOTOGRAPHY BY BRIAN BOOKSTRUCKER

    here were times when chemotherapy made Mary Beth Eckersley too sick to read or watch TV. The sheer exhaustion made it impossible to focus for more than minutes at a time.

    But even at her worst, she could blog. Id do a couple of lines, then stop, she says. It fit what I could do at the time. For Eckersley, this was a godsend. Shed been diagnosed with stage three breast cancer in 2012 her second bout with cancer, as shed survived cervical cancer 30 years earlier. But back then, her treatment had only consisted of minor surgery. This time, she faced multiple invasive surgeries and chemo. This was a whole other ball game, she says.

    CANCER in an online world

    Leap_Summer15_p18-21.indd 18 2015-05-19 7:35 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 19

    FINDING HER VOICE: When she was diagnosed with cancer for a second time in 2012, Calgarian Mary Beth Eckersley turned to the Internet and started the blog, I Will Fight for Me, to pen her journey.

    Leap_Summer15_p18-21.indd 19 2015-05-19 7:35 AM

  • myleapmagazine .ca20 summer 2015

    share their deepest feelings about their cancer. Those who expressed their feelings in writing felt a reduction in their cancer symptoms. A 2008 study by Georgetown University researchers showed patients with leukemia and lymphoma felt much better after treatments if they engaged in expressive writing immediately before.

    Of course, many people Eckersley included dont want to write just for themselves. The good news is that sharing writing publicly may have some specific health benefits. A 2013 study of troubled youth by researchers at the University

    of Haifa, in Israel, found that blogging was more effective than journalling for boosting self-esteem and lessening social anxiety.

    But its not always easy to put yourself out there. For Eckersley, it was a bit nerve-wracking to post her first blog entry. I think I put up the first one at 3 a.m. and just let it go, she says. But I found it really cathartic to type it and put it out there. It made it all less scary.

    Eckersleys initial worries about privacy faded as she went through treatment. Now, she was encountering an endless stream of doctors and nurses who knew all about her. After a while, she stopped feeling self-conscious about exposing her chest in an exam room or sharing her experience online. You think your life is private until you get cancer, she says.

    Like Eckersley, Mike Lang went online for support after being diagnosed with Hodgkins lymphoma a few years ago. At the time, he was an avid outdoorsman who worked as a ski patroller and led adventure trips with his wife, Bonnie. He was also

    Like many cancer patients, Eckersley started a blog to write about her experience. I decided Id make the experience as positive as possible, and put as much of it in the light as I could, she says. Its the darkness that scares us. She also hoped it might help other patients at earlier stages of their journey. So, for the last three years, shes logged on to her blog I Will Fight For Me (iwillfightforme.blogspot.ca) to share everything from medical treatments, to participating in the Enbridge Ride to Conquer Cancer, to her recent decision to become a certified Aqua Fit instructor.

    Research has proven that there are many therapeutic benefits to expressive writing. A regular writing practice can reduce stress, improve memory and sleep patterns, boost immune cell activity and even speed healing after surgery. For cancer patients, putting pen to paper or fingers to keyboard can ease the miseries of treatment. In a 2014 study from the University of Texas, patients with kidney cancer were asked to either to write about neutral topics or

    I decided Id make the experience as positive as possible, and put as much of it in the light as

    I could, says Mary Beth Eckersley.

    CANCER in an online world

    Leap_Summer15_p18-21.indd 20 2015-05-19 7:35 AM

  • myleapmagazine .ca20 summer 2015

    share their deepest feelings about their cancer. Those who expressed their feelings in writing felt a reduction in their cancer symptoms. A 2008 study by Georgetown University researchers showed patients with leukemia and lymphoma felt much better after treatments if they engaged in expressive writing immediately before.

    Of course, many people Eckersley included dont want to write just for themselves. The good news is that sharing writing publicly may have some specific health benefits. A 2013 study of troubled youth by researchers at the University

    of Haifa, in Israel, found that blogging was more effective than journalling for boosting self-esteem and lessening social anxiety.

    But its not always easy to put yourself out there. For Eckersley, it was a bit nerve-wracking to post her first blog entry. I think I put up the first one at 3 a.m. and just let it go, she says. But I found it really cathartic to type it and put it out there. It made it all less scary.

    Eckersleys initial worries about privacy faded as she went through treatment. Now, she was encountering an endless stream of doctors and nurses who knew all about her. After a while, she stopped feeling self-conscious about exposing her chest in an exam room or sharing her experience online. You think your life is private until you get cancer, she says.

    Like Eckersley, Mike Lang went online for support after being diagnosed with Hodgkins lymphoma a few years ago. At the time, he was an avid outdoorsman who worked as a ski patroller and led adventure trips with his wife, Bonnie. He was also

    Like many cancer patients, Eckersley started a blog to write about her experience. I decided Id make the experience as positive as possible, and put as much of it in the light as I could, she says. Its the darkness that scares us. She also hoped it might help other patients at earlier stages of their journey. So, for the last three years, shes logged on to her blog I Will Fight For Me (iwillfightforme.blogspot.ca) to share everything from medical treatments, to participating in the Enbridge Ride to Conquer Cancer, to her recent decision to become a certified Aqua Fit instructor.

    Research has proven that there are many therapeutic benefits to expressive writing. A regular writing practice can reduce stress, improve memory and sleep patterns, boost immune cell activity and even speed healing after surgery. For cancer patients, putting pen to paper or fingers to keyboard can ease the miseries of treatment. In a 2014 study from the University of Texas, patients with kidney cancer were asked to either to write about neutral topics or

    I decided Id make the experience as positive as possible, and put as much of it in the light as

    I could, says Mary Beth Eckersley.

    CANCER in an online world

    Leap_Summer15_p18-21.indd 20 2015-05-19 7:35 AM

    A l b e r t a C a n c e r F o u n d a t i o n summer 2015 21

    Until a few weeks before her death, Lisa Bonchek Adams tweeted about flow-ers, living life to the fullest and the details of her terminal breast cancer. She had more than 15,000 followers and had tweet-ed 176,000 times when she died at 45.Since starting her Twitter account in

    2009, the American mother of three shared the intimate details of her life with cancer, including her medical treatments, prognoses, thoughts on life and dying, and preparing her children for her death.Her candour attracted plenty of fans, but it didnt sit well with two

    newspaper journalists Emma Gilbey Keller and Bill Keller who questioned her choice to share her dying days so publicly. Should there be boundaries in this kind of experience?asked Emma in The Guardian, in 2014. Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?Social media has an indelible effect on public conversations around

    health care, says University of Alberta health law professor Timothy Caulfield: Its changed how people talk about illness, how health information is disseminated, and I think its having an impact on health policy debates.More patients like Adams are sharing their stories online but

    also fundraising for treatments and reaching out to one another. But there are plenty of downsides, says Caulfield. Some patients are go-ing online to crowdsource their diagnoses or find others who share their misguided ideas about health (case in point: the anti-vaccination movement). While the ethics of dying online are murky, there may be legal risks

    associated with social media storytelling, says Caulfield: Any time you tweet about other people, there could be a danger of crossing a line and talking about people inappropriately, he says. In the extreme, that could raise legal issues. But what worries him more is how other patients perceive the sto-

    ries they find. Some may think treatments are more effective than they really are, based on a few patients experiences, for instance. People should remember these are stories and anecdotes, says Caulfield. They can still be very powerful and useful, but they should consider them one persons experiences.And anyone whether theyre tweeting on their deathbed or blog-

    ging about Daffodil Days should exercise common sense before they post anything online. If youre considering doing it, remember that once its out there, its out there. And consider how it might be useful to others.

    only 25. Baffled by the diagnosis, Mike went online to find other young cancer patients: I just really wanted to talk to someone my own age, he says.

    At the time there werent any online support groups for young adults with cancer. Fortunately, Mike was connected to seven other survivors his age through an organization called Young Adult Cancer Canada (youngadultcancer.ca), which he found while surfing the web. The peer support helped Mike get through treatment, so when he and his wife decided to organize an adventure trip for survivors, they invited his online friends.

    In his words, the trip was me trying to figure out what the hell happened. Since diagnosis, hed become increasingly bitter and angry, and needed to find a way to reconnect with the positive person hed been before. So he and Bonnie organized an eight-day kayaking trip along Oregons Owyhee River, similar to the trips theyd organized for at-risk youth before the diagnosis.

    While preparing for the trip, Mike spoke with the other survivors coming along and was amazed by what they told him: I thought, man, these stories are incredible we should share them somehow. Though he had no experience with film, Mike decided to capture footage from the trip and make a documentary about cancer survivorship: Wrong Way to Hope: An Inspiring Story of Young Adults and Cancer. The film earned the CIBC Hope Award in 2011 and has been screened more than 300 times in seven countries. It also led Mike to produce two more films about cancer survivorship: Ebb and Flow: Storytelling for Cancer Survivors and The Valleys. Its my favourite thing to do, he says.

    Since then, Mike and Bonnie have continued to organize adventure tours for young cancer survivors through their company, Survive and Thrive Cancer Programs (survivethrive.org). Many of their clients reach out to them online.

    On top of this, Mike has spent the last couple of years working towards a masters degree in health services research. For his thesis project, he studied the effectiveness of an online chat group called Cancer Chat Canada, which runs weekly discussions guided by a professional facilitator. Mikes work found that the online program had many of the same benefits as a face-to-face group decreasing anxiety and loneliness, in particular.

    While the online realm has been a supporting player in both Mikes cancer journey and resulting career shift, he sees its limitations. This medium is a double-edged sword. Theres all this potential for positive things, and the potential for negative things too, he says. Case in point: online discussion boards, which can contain bad information or trolls.

    And when it comes to privacy, Mike thinks young survivors should consider the risks particularly, the potential harm to future employment opportunities. He recommends using support groups that allow users to be anonymous, like Cancer Chat Canada (cancerchatcanada.ca). Bloggers can use a service

    called Caring Bridge (caringbridge.org) which allows people with health issues to blog about their health journeys, without worrying about it being read by anyone other than their loved ones.

    Many of us assume no one will be interested in our tiny corner of cyberspace in fact, thats what the couple assumed when Bonnie started a blog to keep friends and family updated about Mikes treatment. We didnt think anyone but our families would read the blog, he says. We were surprised over the years that all of a sudden there were thousands of people reading it.

    TweeTing unTil The end

    Leap_Summer15_p18-21.indd 21 2015-05-20 1:38 PM

  • myleapmagazine .ca22 summer 2015

    Medical and fitness professionals are taking their expertise online

    EBY SHELLEY NEWMAN

    CANCER in an online world

    Lifelines of

    ven if you dont know social media lingo, you should know a heck of a lot of people are talking about breast cancer online on any given day.

    On Monday, March 23, the Breast Cancer Social Media (#BCSM) Twitter chat had three million impressions, 734 tweets and 61 participants. Between 50 and 70 people typically participate in the weekly chats, which have seen a growing, global audience since starting in 2011.

    Dr. Deanna Attai, assistant clinical pro-fessor of surgery at the University of Cal-ifornia, Los Angeles and president of the American Society of Breast Surgeons, is a long-time co-moderator of #BCSM and has seen the growth of this online breast cancer group. BCSM is intended to provide guidance, education and support for people, she explains. Weve had such a positive response and have witnessed the development of a real community.

    While Attai wasnt initially involved with the chats, she has brought a medical per-spective to the discussions since. There are times when a physicians voice is needed, she says. When people are discussing topics, we have the chance to correct myths and misperceptions in real time. We stick to the science as much as we can and encourage people to speak to their own doctors if they need specific information.

    In addition to her work with patients and colleagues through #BCSM, Attai also pro-

    Communicationvides presentations and training to help other oncologists incorporate social media into their practices. Obviously, its not going to be for everybody, she says. But, theres a growing number who are seeing the importance of it

    and are making time to use social media as a way to communicate and collaborate.

    Shes seen incredible global col-laboration happen in real time. I was at a conference in San Francisco and tweets from that event were trans-

    lated into five or six languages, so people from around the globe were able to learn from the information, Attai says. We have an obligation to share knowledge it shouldnt just be kept in the confines of a conference room.

    Sharing knowledge and information is also a fundamen-tal goal of the Alberta Prostate Cancer Research Initiative, and this led them to create a website that provides resourc-es for patients, clinicians, scientists, partners and donors. Our goal is to create a dynamic website that will evolve over time, says Catalina Vasquez, director of the Alberta

    Social media allows access to so many people worldwide, and thats positive for young adult cancer survivors, says Lisa Belanger.

    Leap_Summer15_p22-23.indd 22 2015-05-19 7:33 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 23

    BY SHELLEY NEWMAN

    CommunicationProstate Cancer Research Initiative (APCaRI). Since we had such a comprehensive vision, we launched the site in two phases: first in 2013 and then the complete site was launched this February.

    So far, its been successful, with more than 1,000 people worldwide visiting since the full launch in early 2015. The APCaRI team has also seen an increase in its professional connections since 2013. Weve been contacted by scien-tists from around the world, including China, Germany and the United States, Vasquez explains. Now were col-laborating on research projects with people we wouldnt have connected with otherwise.

    From a patient perspective, the APCaRI website of-fers information on studies, trials and testing to links on prostate cancer networks and support groups. Weve also begun to develop interactivity through our blog, says Vasquez. The site is a starting point, and we want to keep building connections through social media so people can continue to learn about prostate cancer and the great research being done in Alberta, while also connecting with each other.

    Dr. Lisa Belanger, founder of Knights Cabin Cancer Retreat, has also observed the power of social media in helping cancer patients and survi-vors. As part of her PhD, Belanger connected with young adult cancer sur-vivors and discovered how ideally suited this group is for social media. Social media allows access to so many people worldwide, and thats

    positive for young adult cancer survivors, says Belanger. They have unique questions about things like whether or not they should tell their future partners or employers theyve had cancer. When you can create relationships and talk about these topics through social media, it becomes empowering to realize that other people are going through the same thing.In her role with Knights Cabin, Belanger works with people who are, on

    average, 50 years old. For this group, shes observed Facebook is a good connecting and motivating tool. We create private Facebook groups for people who participate in the retreats, and thats where the interactions happen, she explains. When people provide updates and receive posi-tive encouragement from others for their accomplishments, it can be a powerful way to connect.Also an exercise physiologist, Belanger uses social media to remind

    people about the importance of exercise for your overall health even when you have cancer. Through social media, people might learn about someone with the same type of cancer who competed in a dragon boat race, for example, and that information might encourage them to become more active, she explains. Seeing other people do something makes it more normal and can even encourage us to make a change. Its so inter-esting to consider the positive personal changes that can come from an online cancer community.

    Power of ConneCtion

    Leap_Summer15_p22-23.indd 23 2015-05-19 7:33 AM

  • myleapmagazine .ca24 summer 2015

    CANCER in an online world

    Leap_Summer15_p24-27.indd 24 2015-05-19 7:30 AM

  • A l b e r t a C a n c e r F o u n d a t i o n summer 2015 25

    The Internet is full of information about cancer, potential treatments and so-called miracle cures. Heres how patients can navigate the tricky world of myths and misinformation about cancer online

    I

    BY SYDNEE BRYANT

    t happens every day: cancer patients searching for answers online stumble across several websites promoting a previously unknown treatment for cancer. The patients get excited and bring the treatment to their doctors attention, only

    to have their hopes dashed when they find out the so-called miracle cure hasnt been scientifically proven.

    Dr. John Mackey, director of the Clinical Trial Unit at the Cross Cancer Institute and professor of oncology at the University of Alberta, knows all too well what can happen when patients get overly enthusiastic about incomplete information on cancer treatments. He and his team recently published a paper about the chemical DCA, and how clinical trial work must be done before how it works in cancer patients can be understood.

    For decades, DCA has been used in patients with mitochondrial disease, which means they are born with a problem in the way they generate energy in their cells. DCA has been found to be helpful in children with this condition, but another U of A scientist has discovered that DCA also has some anti-cancer effects when tested in a laboratory. At that time, at the U of A and the Cross Cancer Institute, clinical trials of DCA were studied in patients with incurable cancer. These were early stage trials to determine how safe this drug was. But they did not compare DCA to standard treatment, says Mackey. Its too early to say whether DCA will become a cancer drug. Despite the lack of information about how well it works in cancer, many patients

    Too Good TO BE TRUE

    turned to the Internet to learn more about DCA and some patients will even purchase DCA online and take it, hoping it will treat their cancers.

    In fact, there are websites singing the praises of DCA with no real information to back it up. Of course, many of those websites are also selling DCA as a treatment for cancer. The chemical, which forms when vinegar and bleach are mixed together, isnt illegal. But is it effective in treating cancer? That hasnt been proven. The small glimmer of potential it presents is enough to get some desperate patients to purchase it online.

    It is difficult to know how much this is happening because it is not a drug sold in a pharmacy. Its very dif-ficult to know how many patients may be taking DCA and what effects it is having, says Mackey. The U of A has completed two clinical trials on DCA and both are published. The studies have shown what an appropriate dose to study further research would be. Theyve giv-en us the proper dose to use in patients with cancer to study in further trial.

    Leap_Summer15_p24-27.indd 25 2015-05-19 7:30 AM

  • myleapmagazine .ca26 summer 2015

    Mackey recommends that patients look for information on the National Cancer Institutes website, cancer.gov. The website describes different cancers for both a layperson and a professional, and the information is written with the patient or pa-tients family in mind. Its updated when there are advances in things like cancer re-search or palliative care, but only if the information passes the website committees approval. Its great information, its up-to-date and there are world-class people who put a lot of effort into making sure that information is available, says Mackey. It freely admits that we dont cure all cancer patients and that, unfortunately for too many of our patients, we dont have effective treatments. The website also points people to clinical trials. Its ideally suited for people who want to know about their cancer and state-of-the-art treatment; it explains types of cancer, grades, treatments, side effects and clinical trials.

    For Albertans, Dr. Mackey recommends another good resource: albertacancer-clincialtrials.ca, a website that launched in the fall of 2014. It lists all of the can-cer clinical trials currently happening in Alberta, and is intended for patients and researchers.

    Caulfield says that the question of whether the Internet hurts more than it helps is a tough one. I love the fact that there is so much good health information available now. With open access, its becoming so you can access really good science informa-tion, says Caulfield. Globally, Im glad that these options are available to patients and to the public. And, I think in the long term, it will be a good thing. However, the downsides are significant and they cant be ignored. But you can think of strategies to mitigate those potential harms.

    The number one strategy Caulfield suggests while researching online is skepti-cism. I think a healthy dose of skepticism should always be your starting point; that should be how you engage the Internet, in general, he says. You want to look for independent sources of information. Often that is hard to figure out, but, generally speaking, you can think of things like universities, governments, professional organi-zations, science organizations, those sorts of things.

    Patients also need to gather a body of information on a topic, instead of just rely-ing on a single piece of information. Patients should never get too excited about one

    study. And that often is what hap-pens on the Internet, says Caul-field. Health is a complicated is-sue and, in general, patients should look for a body of information on a topic, a body of literature or a body of research.

    Noting if a website is selling a product using only testimonials or health claims that havent been

    backed up by proper science is just one way you can tell that the information on the site is generally no good. If testimonials are being used to sell a product or to pro-mote something, or to suggest a health strategy, you can, in general, ignore them. Tes-timonials are not good research, says Caulfield. The other thing patients should be wary of is websites that claim one particular treatment, be it stem cells, genetics or shark cartilage, will work as a treatment for a host of ailments. Thats very rare that one intervention other than exercise would benefit a whole different range of dif-ferent kinds of biological things going on, says Caulfield.

    While Mackey is wary of the wild promises the Internet can make to cancer pa-tients, he believes some patients are learning to distinguish between what is real and what is hype. Ive been working here for 20 years at the Cross Cancer Institute. Each year, people are relying more and more on the Internet. What I think is reassuring is that people are becoming more Internet savvy, says Mackey. My impression is that most patients are smart and are increasingly aware that just because they found it on the Internet, doesnt make it true. So they are coming to their health-care team to check out whether things make sense or not. I think there is an appropriate level of skepticism as people become more comfortable with the Internet.

    CANCER in an online world

    The Internet is a big advance for cancer patients. If they have a bit of

    direction, they can obtain world-class information that is helpful for the patient and the treating physician,

    says Dr. John Mackey.

    There is unlimited information online about science, cancer and various so-called treatments for disease. Theres also a wealth of reliable, scientifically-backed research about cancer, clinical trials and proven treat-ments. So how are patients supposed to know the dif-ference between a website with solid information and one selling snake oil?

    Patients usually go online for information about their cancer in the time between their diagnosis and first clinic visit, says Mackey. Its usually triggered when they are first diagnosed. In that gap period, we often see patients who dont have all the information at their fingertips turn to the Internet, he says.

    Still, this reaction to a diagnosis isnt new in the last 20 years. Before the Internet, there were books and scientific literature, says Mackey. At the end of the day, the Internet is a wonderful tool, but a tool that is used for good or for evil. Its difficult if youre not an expert in the field to know if its a reliable source with good information. Theres good stuff out there and bad stuff out there.

    Now its easier than ever for misinformation and myths to spread much faster than the truth. The Internet allows these things to take flight much more quickly. I think that is a big part of the story, says Tim-othy Caulfield, an ethicist, author and professor at the U of A. The Internet amplifies peoples cognitive bias-es that we already have. So if you want to find a website about shark cartilage [as a treatment for cancer], youre going to find it. It can confirm these pre-conceived no-tions that you have, even if there is no science behind these pre-conceived notions.

    That doesnt mean that patients shouldnt consult the Internet for in-formation about their disease. It just means they have to be smart about it. The Internet is a big advance for cancer patients. If they have a bit of direction, they can obtain world-class information that is helpful for the patient and the treating physi-cian, says Mackey.

    The Internet plays a number of roles in our lives, says Caulfield. Its human nature to look not only for information, but also a connection online. There is no doubt that people are turning to the Internet more and more. And they are increasingly using things like social media Twitter, Facebook to build community. Its becoming one of the primary sources of health infor-mation, says Caulfield.

    While theres nothing wrong with searching for a community online, patients looking for health infor-mation would do well to be cautious. Websites are also used to market products and to build hype on particu-lar bits of health information, says Caulfield.

    So is it best for cancer patients to avoid the Internet and its myriad of confusing, conflicting information altogether?

    Leap_Summer15_p24-27.indd 26 2015-05-20 1:38 PM

  • myleapmagazine .ca26 summer 2015

    Mackey recommends that patients look for information on the National Cancer Institutes website, cancer.gov. The website describes different cancers for both a layperson and a professional, and the information is written with the patient or pa-tients family in mind. Its updated when there are advances in things like cancer re-search or palliative care, but only if the information passes the website committees approval. Its great information, its up-to-date and there are world-class people who put a lot of effort into making sure that information is available, says Mackey. It freely admits that we dont cure all cancer patients and that, unfortunately for too many of our patients, we dont have effective treatments. The website also points people to clinical trials. Its ideally suited for people who want to know about their cancer and state-of-the-art treatment; it explains types of cancer, grades, treatments, side effects and clinical trials.

    For Albertans, Dr. Mackey recommends another good resource: albertacancer-clincialtrials.ca, a website that launched in the fall of 2014. It lists all of the can-cer clinical trials currently happening in Alberta, and is intended for patients and researchers.

    Caulfield says that the question of whether the Internet hurts more than it helps is a tough one. I love the fact that there is so much good health information available now. With open access, its becoming so you can access really good science informa-tion, says Caulfield. Globally, Im glad that these options are available to patients and to the public. And, I think in the long term, it will be a good thing. However, the downsides are significant and they cant be ignored. But you can think of strategies to mitigate those potential harms.

    The number one strategy Caulfield suggests while researching online is skepti-cism. I think a healthy dose of skepticism should always be your starting point; that should be how you engage the Internet, in general, he says. You want to look for independent sources of information. Often that is hard to figure out, but, generally speaking, you can think of things like universities, governments, professional organi-zations, science organizations, those sorts of things.

    Patients also need to gather a body of information on a topic, instead of just rely-ing on a single piece of information. Patients should never get too excited about one

    study. And that often is what hap-pens on the Internet, says Caul-field. Health is a complicated is-sue and, in general, patients should look for a body of information on a topic, a body of literature or a body of research.

    Noting if a website is selling a product using only testimonials or health claims that havent been

    backed up by proper science is just one way you can tell that the information on the site is generally no good. If testimonials are being used to sell a product or to pro-mote something, or to suggest a health strategy, you can, in general, ignore them. Tes-timonials are not good research, says Caulfield. The other thing patients should be wary of is websites that claim one particular treatment, be it stem cells, genetics or shark cartilage, will work as a treatment for a host of ailments. Thats very rare that one intervention other than exercise would benefit a whole different range of dif-ferent kinds of biological things going on, says Caulfield.

    While Mackey is wary of the wild promises the Internet can make to cancer pa-tients, he believes some patients are learning to distinguish between what is real and what is hype. Ive been working here for 20 years at the Cross Cancer Institute. Each year, people are relying more and more on the Internet. What I think is reassuring is that people are becoming more Internet savvy, says Mackey. My impression is that most patients are smart and are increasingly aware that just because they found it on the Internet, doesnt make it true. So they are coming to their health-care team to check out whether things make sense or not. I think there is an appropriate level of skepticism as people become more comfortable with the Internet.

    CANCER in an online world

    The Internet is a big advance for cancer patients. If they have a bit of

    direction, they can obtain world-class information that is helpful for the patient and the treating physician,

    says Dr. John Mackey.

    There is unlimited information online about science, cancer and various so-called treatments for disease. Theres also a wealth of reliable, scientifically-backed research about cancer, clinical trials and proven treat-ments. So how are patients supposed to know the dif-ference between a website with solid information and one selling snake oil?

    Patients usually go online for information about their cancer in the time between their diagnosis and first clinic visit, says Mackey. Its usually triggered when they are first diagnosed. In that gap period, we often see patients who dont have all the information at their fingertips turn to the Internet, he says.

    Still, this reaction to a diagnosis isnt new in the last 20 years. Before the Internet, there were books and scientific literature, says Mackey. At the end of the day, the Internet is a wonderful tool, but a tool that is used for good or for evil. Its difficult if youre not an expert in the field to know if its a reliable source with good information. Theres good stuff out there and bad stuff out there.

    Now its easier than ever for misinformation and myths to spread much faster than the truth. The Internet allows these things to take flight much more quickly. I think that is a big part of the story, says Tim-othy Caulfield, an ethicist, author and professor at the U of A. The Internet amplifies peoples cognitive bias-es that we already have. So if you want to find a website about shark cartilage [as a treatment for cancer], youre going to find it. It can confirm these pre-conceived no-tions that you have, even if there is no science behind these pre-conceived notions.

    That doesnt mean that patients shouldnt consult the Internet for in-formation about their disease. It just means they have to be smart about it. The Internet is a big advance for cancer patients. If they have a bit of direction, they can obtain world-class information that is helpful for the patient and the treating physi-cian, says Mackey.

    The Internet plays a number of roles in our lives, says Caulfield. Its human nature to look not only for information, but also a connection online. There is no doubt that people are turning to the Internet more and more. And they are increasingly using things like social media Twitter, Facebook to build community. Its becoming one of the primary sources of health infor-mation, says Caulfield.

    While theres nothing wrong with searching for a community online, patients looking for health infor-mation would do well to be cautious. Websites are also used to market products and to build hype on particu-lar bits of health information, says Caulfield.

    So is it best for cancer patients to avoid the Internet and its myriad of confusing, conflicting information altogether?

    Leap_Summer15_p24-27.indd 26 2015-05-20 1:38 PM

    Two of my co-workers recently disclosed to me that they dont have Facebook accounts, and I am now sitting in judgment. I am not proud of it, but I am. My first thought was, They must be the only two left standing! As they listed their reasons for not succumbing to social media, I could hear a little voice inside me saying: Keep up with the times and Get with the program. It was a taste of what patients and families experi-

    ence when considering their healthcare and feeling frustrated with our inability to meet technological needs. Over the years I have heard many requests from our patient and family advisors for a patient portal, and have even heard our advisors say, Keep up with the times. A portal would include an online profile where a patient can look up appointments, see test results, provide information and updates to their providers, ask questions, access a navigation tool to help them find the location of their next appointment and even access patient education materials. To me, a non-techie but not-quite-Luddite, this seems like a reasonable request.But this is one of those instances when I am re-

    minded that my job in engagement requires some degree of systems intelligence. In order to broker the conversation between patients, families and the orga-nization, I need to be able to understand the system implications behind such a seemingly simple request. The first obstacle is the dangerous assumption

    that all patients and families have access to a com-puter. Some people might prefer regular mail. One thing I have learned is that the only generalization we can make when it comes to patient experience is that patients and families would like the opportunity to personalize their experiences as much as possible. In receiving our care, patients are vulnerable, and being able to have some control over that care can mean a lot to them. This means that, if some patients want pa-per records and some want high-tech apps, we need to have two functional systems. Dont throw out those postage stamps just yet!Heres the next piece in a complex puzzle: our

    health care organization has more than 80 systems all containing pieces of secure patient informa-tion and some of the integral patient information is housed in the private sector too. I am told by my IT de-

    partment that, even if we could get all of the information on one system, it would be tricky to display it in a logical, coherent manner, like a portal.But the most compelling obstacle might be surprising: security and privacy.

    Recent security breaches shared in the media remind me that once information is available online, it can be stolen. Our teams of IT gurus are always working on keeping information safe but this is a key consideration when thinking about cre-ating a patient portal. In terms of privacy, we would need to consider whether all medical profession-

    als would have access to see all patient information. What about a proxy login can family members or those with power of attorney see a patients data? A patient may want a sensitive test done or for his or her diagnosis to be kept com-pletely private and only available on a need-to-know basis. But once we have the information all together, how do we control access?There are many unanswered questions, yet I can hear one of my wise patient ad-

    visors saying as she reads this: If the U.S. can figure it out, I know we can, too. This is truly the beauty of engagement: seeing the whole picture and all of the pieces of the puzzle. And a little dash of encouragement and patience goes a long way, too.If I were a betting person, I would say that we will have a patient portal

    before my co-workers ever join the world of social media. Now that is something I can like.

    Jessica Dollard is the patient-centred experience advisor on the Calgary Cancer Project. As a consultant in engagement and patient experience, as well as an actor, film and theatre producer, programmer, medical skills trainer and executive certified coach, she brings a creative background to this work.

    Portal Patience

    BY JESSICA DOLLARD

    Online resources are a way for patients to share the cancer experience but they bring up the question of security

    giving patients a voiceEngagement

    A l b e r t a C a n c e r F o u n d a t i o n summer 2015 27

    Leap_Summer15_p24-27.indd 27 2015-05-19 7:30 AM

  • myleapmagazine .ca28 summer 2015

    Lovers

    Leap_Summer15_p28-31.indd 28 2015-05-19 7:27 AM

  • myleapmagazine .ca28 summer 2015

    Lovers

    Leap_Summer15_p28-31.indd 28 2015-05-19 7:27 AM

    A financial relief program allowed a Morinville couple to focus on whats important their recovery, and each other

    ROCK

    A l b e r t a C a n c e r F o u n d a t i o n summer2015 29

    T ammy Wegrich was preparing for her daughter Courtneys wedding in July 2011, making decorations for the hall, sewing, and designing tables, helping out with all the things moms do when their daughters are getting married, she says. She took a break for a regular doctors appointment and opted to undergo one of the unpleasant aspects of the physical providing a stool sample. That simple test saved her life. Though she exhibited no symptoms, the sample came back positive and a