Together –
25 years of impact. A future of hope.
re p o r t to t he com m unity 2 01 8 - 2 0 1 9
COVER STORY
Prostate cancer runs in my family In 2012, 50 ye ar old Ke vin Trotman le arne d he had prostate cancer. The wind came out of his sails – he was in shock, denial, stopped in his tracks. One of the first things his wife and he did in the early days following his diagnosis was to search the internet. There, they learned of a local Prostate Cancer Canada Ne twork support group for Oakville /Mississauga, which offers fellowship and guidance through personal experiences. Their members have been on the prostate cancer journey and are there to help others.
“As a black man from the Caribbe an, I think itʼs ve ry important that prostate cance r aware ne ss is brought to our community. One of the things I found out was that black men have a higher rate of prostate cancer,” says Ke vin. “The black community ne e ds to e mbrace that this is happening. Itʼs not going anywhere, and we need to educate our kids that they need to get tested.”
“I kne w once I talke d to the first volunte e r at the support group that I wanted to volunteer, I wanted to help out,” Kevin says.
Kevin is understandably concerned about his son: “My uncle had prostate cancer, my brother just had surgery. I know my son may have to deal with it at one time or another. I want to put as much information out there and raise as much mone y so that by the time he hits my age, there will be a cure, or better treatments and detection.”
As a lifelong volunteer, this was a natural step and an important way for him to help others – especially in the black community.
Kevin feels he has received a lot by volunteering: “Iʼm in better emotional and physical health from doing the volunteering because I understand more.”
“
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My uncle had prostate cancer, my brother just had surgery. I know my son may have to deal with it at one time or another. I want to put as much information out there and raise as much money so that by the time he hits my age, there will be a cure, or better treatments and detection.
”
2018 - 2019 REPORT TO THE COMMUNITY
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CEO/CHAIR LETTER
Together – 25 years of impact. A future of hope.
In our 25 years of existence, we can proudly say that we have funded research that has improved care around the world. We have e nhance d the work of support groups for survivors and their family members. We have offered e asy-to-unde rstand information to those affe cte d. We have increased public awareness. We have worked with gove rnme nts and he alth-care profe ssionals to improve access to new and publicly-funded diagnostics, treatment and care. Our contribution, along with the efforts of so many others, has resulted in the death rate from prostate cancer being halved since 1994. That is remarkable progress. But we cannot stop as long as, on average, 11 Canadian me n die e ve ry day of this dise ase . Thatʼs why, in this
Peter Coleridge, MHSc President & CEO Prostate Cancer Canada 2018 - 2019 REPORT TO THE COMMUNITY
landmark ye ar, we launche d a ne w five -ye ar Strate gic Plan. It is the roadmap for our future shared journey to save and improve more live s. We launche d it following e xte nsive discussions and analysis – it was vital for us to get it right so we can deliver even greater impact by working with everyone committed to the prostate cancer cause. Whe the r achie ving impact or cre ating more hope for the future – we only make a diffe re nce by working together with those affected by prostate cancer, donors, volunteers, researchers, health care professionals and so many others. Please join us as we work to end prostate cancer.
Christopher Wein Chair, Board of Directors Prostate Cancer Canada // Page 5
2019-2023 STRATEGIC PLAN
Despite the progress, the need to make more of a difference is urgent because every day, on average, 63 men are diagnosed with prostate cancer. Itʼs the most common cancer among Canadian men. If caught late, three in four will die within five years. Our new roadmap is a shared journey to save and improve more lives.
Continuing our 25 year journey
Action plan to create more hope
We need to work together to:
Working with partners, our goals are to:
•
•
fund more research to generate new knowledge
•
incre ase the spe e d at which ne w e vide nce is incorporated into government policies and health care practices
•
e ncourage more conve rsations by sharing the be st information and include younge r Canadians, women, families and those at higher risk
•
innovate in the way we engage staff and volunteers, manage our financial re source s, and incre ase donations
ensure no man is diagnosed with stage IV prostate cancer by 2029
•
de cre ase the de ath rate of prostate cance r by another 50 per cent by 2029
•
improve timely access to new and publicly-funded diagnosis, treatment and care
•
improve acce ss to the highe st quality prostate cancer information
•
make it e asie r for all Canadians to talk about prostate cancer
Read more at prostatecancer.ca/strategicplan // Page 6
2019-2023 STRATEGIC PLAN
The leading national charity addressing prostate cancer needs across the country OUR VISION
OUR MISSION
A life without prostate cancer.
We strive to save lives by improving prevention, detection and treatment of prostate cancer, and to enhance the quality of life for all Canadians affected by the disease through collaboration, driving world-class research and translating knowledge into better outcomes.
JOIN US We invite you to join us to achieve the goals of our Strategic Plan
TALK TO YOUR DOCTOR
JOIN THE CONVERSATION
about prostate cancer and the best early detection strategy for you
to spread the message about prostate cancer – especially the importance of early detection
PARTICIPATE
DONATE
in our fundraising and awareness events
to save more lives
LEND YOUR VOICE
VOLUNTEER
to help improve care
to make a difference
2018 - 2019 REPORT TO THE COMMUNITY
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RESEARCH
New hope for advanced prostate cancer More me n are surviving prostate cance r than e ve r be cause of inve stme nt into re se arch and the de dication of he alth care profe ssionals. Unfortunate ly, on ave rage , 11 Canadians still die e ve ry day from this dise ase . Additionally, many with low risk prostate cancer are treated when they might not need it.
FIGHTING THE MOST ADVANCED PROSTATE CANCERS
Today, e ve n though a numbe r of tre atme nts are available for advanced prostate cancer, many of these cance rs e ve ntually be come re sistant to tre atme nt. Two of our funded research teams are at the forefront of finding ways to tre at advance d prostate cance rs that fail to respond to current treatments.
Learn more about our research at prostatecancer.ca/research
RESEARCH
Dr. Zoube idi, from the Unive rsity of British Columbia, is se t to change the course of a form of advance d cance r, calle d neuroendocrine prostate cancer (NEPC), a rare but extremely aggre ssive type of prostate cance r without effe ctive tre atme nts. She and he r te am de ve lope d and are te sting a drug they hope will be a major breakthrough. After discovering a molecule that NEPC needs to survive and spread, the team developed a first-of-its-kind drug that targets and blocks the molecule, stopping these tumours in their tracks. Her team is modifying this drug so it can be tested on humans, hopefully in the near future. “Itʼs e ncouraging to unde rstand how cance r e volve s to be come aggre ssive , and how we can de sign ways to attack these aggressive cancers,” she says.
Dr. Amina Zoubeidi, University of British Columbia
Dr. Rennie, from the Vancouver Prostate Centre, is leading a team developing an effective drug for men who have become resistant to existing treatments. The goal of this drug is that it can be used alone or in combination with other therapies. The team anticipates they will start clinical trials soon. This project is so promising that it led to an additional investment by Roche , a pharmace utical company, of more than $100 million.
Dr. Paul Rennie, Vancouver Prostate Cancer Centre
2018 - 2019 REPORT TO THE COMMUNITY
“This research has the potential to produce a whole new generation of drugs to deal with hormone resistance."
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RESEARCH
Living with prostate cancer that has spread When Thomas Maxwell had his PSA te ste d at 58, e ve rything looke d fine . At his ne xt appointme nt thre e ye ars late r, his le ve l had climbe d - slightly. Four ye ars later, his wife encouraged him to have another test.
experiences low energy and hot flashes, though he finds the m manage able . “But, the y are cle ar indications that you are diffe re nt than be fore you got the call that said your PSA is 6.5,” he says.
This time, the number painted a chilling picture: he had prostate cance r. Thomas re ce ntly found out that the cancer had spread outside his prostate. There is no cure. He has started therapy to suppress male hormones like te stoste rone to slow the growth of the cance r and give him more time, but that is all he can hope for.
De spite his diagnosis, Thomas is giving back to those supporting him. He re ce ntly volunte e re d for Prostate Cancer Canada as a community representative on a panel that decides which research projects to fund.
He recognizes that following up earlier may have made a difference. “That was my failure in terms of maintaining my health,” he says. “I would really suggest to people to have regular PSA tests, because had I had one in that fourye ar window be twe e n 61 and 65, the dise ase probably wouldnʼt have advance d to the stage that it was whe n they found it.”
“I felt it was a small way to give a tiny bit back. Itʼs nice to see that researchers are real people and that this is a big part of their life.” Re se arch into advance d forms of prostate cance r like Thomasʼ will make a diffe re nce . He has be e n give n the gift of time from the drug he currently takes, which became available in the last ten years following extensive re se arch. More succe ssful re se arch can give me n like Thomas even more time and better quality of life.
He has re ce ntly starte d noticing the effe cts of his prostate cance r. As a re sult of the hormone the rapy, he
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I would really suggest to people to have regular PSA tests, because had I had one in that four-year window between 61 and 65, the disease probably wouldn’t have advanced to the stage that it was when they found it.
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RESEARCH
Research into survivorship The death rate from prostate cancer has been cut in half in the last 25 years – great impacts of treatment. Here are three researchers who are looking for ways to make
Dr. Jennifer Jones, University Health Network, Toronto Dr. Jones focuses on helping the cancer care system meet survivorsʼ re cove ry ne e ds. She is part of the Prostate Cance r 360 re se arch te am, a thre e -city survivorship project awarded by Prostate Cancer Canada and proudly funded by Movember. “The first part is to build a national group of patients that have finishe d tre atme nt and follow the m ove r time . It helps us understand the course of recovery, whoʼs at risk for issues,” she says. To date, more than 1,400 men have joined, providing information about how side effects and quality of life change over the course of recovery and into long-term survivorship. The second part looks at the impact of survivorship care plans, de ve lope d with patie nts at the e nd of tre atme nt.
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The y are cre ate d afte r a 20-30 minute inte rvie w with a spe cially traine d nurse . The y provide patie nts with information about their diagnosis, treatments and followup care . The y also he lp patie nts manage ongoing side effe cts, provide e ducation on pote ntial late effe cts and healthy lifestyle changes, as well as links to resources. Dr. Jones is aware of the challenges survivors face and is de te rmine d to improve the ir e xpe rie nce : “The re se arch I love most is imple me ntation re se arch – ge tting the things we know work into patient care. Thatʼs meaningful because you can see change happen quickly. You can see peopleʼs lives improve.”
RESEARCH
news for the many survivors. As a result, many more men need to cope with the a difference in the lives of those affected by the disease.
Dr. Nicole Culos-Reed, Professor, University of Calgary Dr. Culos-Re e d is studying whe the r e xe rcise , nutrition and stre ss-re duction can incre ase the physical and psychological we ll-be ing of survivors. Ne arly 700 me n are e nrolle d in this proje ct awarde d by Prostate Cance r Canada and proudly funde d by Move mbe r through TrueNTH, a prostate cancer survivorship program funded by Movember. He r re se arch focuse s on the impact of physical activity be fore and afte r tre atme nt to de te rmine if it incre ase s quality of life and he lps re cove ry. The goal is to drive be haviour change , spe cifically he lping me n de ve lop and maintain the habit of exercising. “Weʼre changing behaviours and improving quality of life.
2018 - 2019 REPORT TO THE COMMUNITY
“We’re changing behaviours and improving quality of life. Many participants tell us this program gave them back their life. They find renewed energy, strength, positive sense of self, and are in control of their lives – rather than cancer controlling them.” Many participants te ll us this program gave the m back the ir life . The y find re ne we d e ne rgy, stre ngth, positive sense of self, and are in control of their lives – rather than cancer controlling them,” she says. Five ye ars of funding has made a diffe re nce : “To have impact across Canada, and be considered a world-leader in prostate cance r and e xe rcise programs, is due to the funding that has allowe d us to disse minate the be st evidence-based practices.” He r hope is that all Canadian me n with prostate cance r will have access to wellness programs during their journey – spe cifically we ll-traine d profe ssionals and online resources.
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RESEARCH
Reinforcing the importance of exercise Dr. Courne ya is le ading a first of its kind re se arch study looking at whe the r e xe rcise can re duce tumour growth and anxiety for men on active surveillance. Active surveillance is the monitoring approach for low risk prostate cancer, offering treatment to patients only when their disease progresses. This allows patients to delay or avoid tre atme nt and the pote ntial side effe cts that can follow surgery and radiation therapy. This re se arch, starte d in 2018 and funde d by Prostate Cance r Canada, looks at the effe cts of e xe rcise during active surve illance to se e if it can slow cance r growth, control anxie ty, manage the fe ar of cance r progre ssion, and better prepare men for the possibility of treatment.
Dr. Kerry Courneya, Professor, University of Alberta, Edmonton
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If he is corre ct, e xe rcise could be a simple way to re ap significant benefits.
RESEARCH
“My blood pressure and resting heart rate have come down. My psychological wellbeing – selfesteem and all of that – is also better. Since I started being active again, and especially since this program, I’m in a much better spot than I was even six months ago.” Don Dary recently finished Dr. Courneyaʼs exercise study. Diagnose d with slow-growing prostate cance r in 2016 at age 68, he opted to go on active surveillance rather than be treated with surgery or radiation right away.
e ndorphin high whe n I use d to jog, but I wasnʼt ge tting that whe n I stoppe d. Since I starte d be ing active again, and e spe cially since this program, Iʼm in a much be tte r spot than I was even six months ago.”
“I fe e l comfortable with my de cision to be monitore d,” says Don. “I check my PSA levels and have physical exams every six months to see where Iʼm at. One of the hardest things for people who make this choice is the psychological hurdle – youʼre always thinking, ʻGee, did I make the right decision? The cancer is growing in me.ʼ I am a little tense waiting for the next PSA test, so you have to manage your anxiety.” An avid jogge r for most of his life , Don found that afte r his wife passe d away, he stoppe d jogging. As a re sult, his e ne rgy le ve ls de cline d, and his blood pre ssure and cholesterol increased. Taking stock of his declining health led him to making a commitment to start exercising again. Don is se e ing the re sults afte r 36 se ssions ove r thre e months in Dr. Courneyaʼs program. “My blood pre ssure and re sting he art rate have come down,” he says. “My psychological wellbeing – self-esteem and all of that – is also be tte r. I use d to e xpe rie nce that
2018 - 2019 REPORT TO THE COMMUNITY
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BY THE NUMBERS
ALBERTA
RESEARCH
$19M 21 1 44 5
RESEARCH
$3M 8 2 21 2
SASKAT CHEWA
N
BRITISH COLUMBIA
RESEARCH
MANITOBA ONTARIO
$120K 1 1 1
RESEARCH
1 2 RESEARCH
IN 2018/2019:
$51
million
68 8
value of all new and ongoing projects
projects funded
new grants awarded
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RESEARCH
228 52 33
researchers
partner institutions/ universities and hospitals
active clinical trials
$26M 27 4 111 23
funding
BY THE NUMBERS
projects new grants researchers
RESEARCH
partner institutions
$3M 10 1 39 14
RESEARCH
A prostate cancer survivorship program with projects awarded by Prostate Cancer Canada and funded by Movember. Its programs include:
Lifestyle Management – BC, AB, MB, ON, NS
RESEARCH
NDLAND NEWFOU AND
Physical activity, stre ss-re duction and nutrition programs/re source s for me n. Includes support and information through group, at-home and online sessions
1 1
OR LABRAD
QUEBEC
Peer Navigation – ON, BC One-on-one support from those who have been through the journey
NO VA
SC OT IA
NEW BRUNSWICK
RESEARCH
$90K 1 4 3
RESEARCH
2 5
SHAReC – ON, BC, AB, NS Online clinic focused on helping men and their partners cope with sexual side-effects of prostate cancer
eLIFT – ON, BC
6,013
74
citations of Prostate Cancer Canada funded research in the work of other scientific publications (2018)
Online vide o library to he lp me n unde rstand and manage urinary and bowel side effects of treatment
new scientific publications (2017/2018) To learn more about TrueNTH and its programs, visit TrueNTH.ca // Page 17
PROFILES OF GENEROSITY
Dedicated donors and fundraisers are at the heart of what we do. Each has a reason to give.
Keeping Zaidie Phil’s story alive The Feldbergs lost Phil – father and grandfather (Zaidie) – to prostate cance r in 2005, but he re mains ce ntral to their lives. Diagnosed at 54, he visited a specialist. By the time he returned, it was too late. The cancer had spread. “Afte r he die d, many pe ople came forward and told us he had helped them that we didnʼt even know about. He came he re as an immigrant from Poland with about 10 cents in his pocket. He was self-made and all about giving back,” says Philʼs daughter, Robyn, who tries to follow his example with her husband and four children, constantly asking, “What would my dad do?” “My kids and I talk about my dad practically e ve ry day. When the kids we re younger, the y always asked to hear about him as their bedtime story,” Robyn recalls fondly. “If you spoke to them today, youʼd think he was here.” Robynʼs kids know a lot about the disease that took their grandfathe r, e ve n choosing Prostate Cance r Canada to present for a school assignment.
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“Aware ne ss is a huge pie ce that was not around,” says Robyn. “Before my dad had prostate cancer, I had never heard that word.” Deciding to honour her dad on Fatherʼs Day the year after Phil died, Robyn and her mom rallied the family to take part in the Do it For Dads Walk Run and established the Phil Feldberg Fund at Prostate Cancer Canada. “We thought, what a great way to raise money and focus on something else on a really hard day,” says Robyn. “It was a way of doing some thing in me mory of my dad, because he did so much for others.” The e ntire e xte nde d family raise s aware ne ss and funds. The y have ke pt Philʼs le gacy alive , raising more than $500,000 for up-and-coming re se arche rs across the country so that no othe r family has to lose the ir dad, husband, brother or grandfather to the disease.
From loss to action Drew Green de scribe s a me mory from his youth that sticks in his mind: “My grandfather, who I was named after, passed away at the age of 58 after suffering from prostate cance r. I re me mbe r cle arly be ing 14 and standing in front of his house with my Dad near the end of my Grampyʼs life. My Dad looked at me right in the eyes and said: ʻSon, donʼt worry, by the time Iʼm his age, theyʼre going to find a cure.ʼ” Tragedy would strike again. His father lost his life to prostate cancer at age 62. Drew says: “For him not to be here and not to see some of my success or some of my siblingsʼ success, to see his grandkids and their success – thatʼs a really sad thing.” Dre wʼs succe ss include s his le ade rship in 15 companie s, including Pre side nt and CEO of Vancouve r-base d INDOCHINO – the large st custom appare l brand in the world. INDOCHINO proudly sponsors many Prostate Cancer Canada fundraising e ve nts and campaigns locally and nationally to help end prostate cancer. He summarize s his hope s for the future : “Iʼd love to se e me n, wome n, familie s across the country take the time to unde rstand the dise ase , the ways the y can prote ct the mse lve s and band toge the r to do e ve rything we can to eliminate it. The biggest impact is families frankly – the me morie s the yʼre not able to partake in, mome nts and milestones in their lives. If we can make sure those memories and milestones are enjoyed by more men – that would be an amazing outcome.”
The Green family is using legacy giving as part of their generosity. Find out more at prostatecancer.ca/legacy
EVENTS & CAMPAIGNS $2.8
million raised
14,000 + participants
70 +
locations
Special events are a fun and effective way to make more people aware of prostate cancer and raise valuable funds.
2018 - 2019 REPORT TO THE COMMUNITY
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EVENTS/CAMPAIGNS
From death sentence to Cruisin’ for a cure The morning afte r working out on a stationary cycle , Jim Dorsey had blood in his urine. It was 1999 and he was 55. This first symptom, discovered by ʻpure accidentʼ, led to a diagnosis of advanced, aggressive prostate cancer. “Part of the bargain I made was that I will do whatever I could to avoid other families having to go through what my wife and I went through,” he says. Shortly afte r his diagnosis in 1999, he joine d his local prostate cancer support group in Brampton. Like Prostate Cancer Canada, the support group, now named Prostate Cancer Canada Network (PCCN) Brampton, celebrates its 25th anniversary in 2019. “We ʼre ve ry active . We go e ve rywhe re we can to talk about prostate cance r. We do at le ast one e ve nt a month in the Brampton area. We see 500-1,000 men and wome n at the se e ve nts. We have pe ople in te ars whe n we talk to the m be cause the yʼre ne wly diagnose d and absolutely terrified,” Jim says. “To be able to walk away from some one whoʼs calm and convince d the re ʼs a way
forward, itʼs very important.” A unique aspe ct of PCCN Brampton is the ir car-re late d events: “Weʼve hung a lot of what we do on going where the guys with cars are and talking to them about prostate cancer. Last year, we were made aware of a dozen men who had been treated because of our awareness activities.” Since 2007, Jim and Paul Henshall, also a prostate cancer survivor and car enthusiast, have run Cruisinʼ for a Cure Canada. Originally starte d in California and brought to Canada by Jim, Cruisinʼ combine s cars, aware ne ss and fundraising. Hundre ds of car e nthusiasts bring the ir ve hicle s and thousands atte nd, visiting the mobile PSA te st clinic, re ading mate rials about the dise ase and conne cting with survivors and family me mbe rs who can answe r questions. Each year, the event raises $10,000 for Prostate Cancer Canada to invest in its education, awareness and survivorship programs.
Wearing plaid to honour dad Rob Thacker is passionate about the se riousne ss of prostate cancer. “Because so many survive, I think we donʼt really take into account how bad this disease can be for those who donʼt survive.” He speaks from experience. His dad, Keith, died of stage IV prostate cancer in 2017 at age 77. “Itʼs simple ,” says Rob. “We ne e d to be cle ar that this is something you need to get detected early.” Doctors found Ke ithʼs cance r at stage II be cause he was experiencing urinary problems, finally admitting the need to se e a doctor. Until the n, he was active and healthy. He had never undergone PSA testing. After eight months of radiation therapy in the UK, Keithʼs PSA levels dropped. Two years later, he began having difficulty walking and had a bone scan. Before receiving the results, he broke his leg getting out of bed. The cancer had spread to the bones in his thigh, chest, hip and back. Doctors did not catch it because it had moved so quickly. Keith would not walk unassisted again, spending his last five months in a wheelchair at home and later in care. Rob now shares his dadʼs story at events, sports his Prostate Cancer Canada tie and pin, and wears Plaid for Dad on the Friday before Fatherʼs Day to raise funds and get people talking. “I wouldnʼt wish this on my worst e ne my,” says Rob. “Itʼs such a painful condition that itʼs my mission to tell people to be aware. As difficult as it can be to have problems down there, donʼt let it go on. Talk to your doctor.”
To register for Plaid For Dad, visit plaidfordad.ca
2018 - 2019 REPORT TO THE COMMUNITY
“Wearing plaid is about trying to make the smalle st diffe re nce . Eve n if just one family doe snʼt have to go through what my family did, I think thatʼs the biggest thing I can do.” // Page
INFLUENCE & ADVOCATE
The playing fie ld is not le ve l for Canadians whe n it come s to prostate cance r. De pe nding on whe re the y live , not e ve ry man has provincial he alth plan cove rage of the PSA test. Others must pay for drugs out of their own pocket once they leave hospital.
We influence health practice and policies by working with governments, as well as getting members of the public to share their views. We promote the use of the latest best practices by working with health care professionals.
INFLUENCE & ADVOCATE
ONTARIO GOVERNMENT OUTREACH ACTIVITIES •
Ontario is one of two provinces that do not fund the PSA test for screening. Leading up to the 2019/2020 provincial budget, we made a written submission and re ache d out to Me mbe rs of the Provincial Parliame nt (MPPs). This re sulte d in 14 me e tings with MPPs, as we ll as me mbe rs of the Pre mie rʼs and Minister of Healthʼs office
•
WORKING TO CHANGE GOVERNMENT HEALTH POLICIES •
We made submissions for the approval and funding of ne w and be tte r drugs by fe de ral and provincial government bodies, specifically
MPP De e pak Anand made this state me nt in the Provincial Parliame nt: “Mr. Spe ake r, pre ve ntion is better than cure. There is a blood test available on the market with proven results in screening for PSA. It costs $30 out of pocket and is recommended e ve ry thre e to five ye ars. Combine d with re gular che cks, it can increase survival, the odds of early de te ction and a be tte r prospe ct for our fe llow citizens.”
CHANGING HEALTH CARE PRACTICE •
We he lp health care profe ssionals adopt the late st practice s so all Canadians with prostate cance r receive the best care. To inform them, we
supporting thre e drugs to the pan-Canadian Oncology Drug Review, and
e ngage d with 639 he alth care profe ssionals at conferences,
advising the federal government on pharmacare with partner organizations.
issued statements on our updated PSA position, tobacco use and medical marijuana, and funded the Canadian Urological Association to create a course about monitoring and treating advanced prostate cancer.
2018 - 2019 REPORT TO THE COMMUNITY
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INFLUENCE & ADVOCATE
Mobilizing an army of caregivers “Prostate cancer is a family disease. The patient needs support, but so does the partner caring for their loved one. I’ve experienced firsthand life as a caregiver and what it was like to fight for my husband. The whole time I knew I had to give back. And that’s when I got involved with Prostate Cancer Canada.” At 56, Roberta Casabonʼs husband, Gle nn, was diagnosed with prostate cancer that had already spread in his body. He r most important job be came that of care give r. Gle nn die d se ve n ye ars late r at 63, afte r the couple ce le brate d the ir 40th we dding annive rsary. A ye ar afte r she lost he r husband, Robe rta de cide d to do something for caregivers across the country. Her crusade began. “Prostate cance r is a family dise ase ,” she says. “The patie nt ne e ds support, but so doe s the partne r caring for the ir love d one . Iʼve e xpe rie nce d firsthand life as a caregiver and what it was like to fight for my husband. The whole time I knew I had to give back. And thatʼs when I got involved with Prostate Cancer Canada.” Since 2011, Robe rta's passion has be e n unwave ring, le ading he r to be come involve d whe re ve r she can to raise awareness and increase support for caregivers. She
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attends model train shows - her husbandʼs hobby - speaks with survivors and partners, and helps develop programs with Prostate Cancer Canada and Movemberʼs TrueNTH. “Care give r is a re ally tough role ,” she says. “What pe ople donʼt re alize is the re are two pe ople and all the responsibility falls on the caregiver.” Robe rta be lie ve s change is happe ning, but much more still needs to be done to move the needle. “Research shows this is a neglected part of treatment,” she says. “The medical community has begun to acknowledge that and is starting to look at ways to incorporate support for caregivers. Itʼs still in its early stages, but itʼs recognized. I hope before my time comes, that I can see some change to start addressing this.” “Iʼll do what I can, for as long as I can. Thatʼs my mantra.”
An afterthought saved his life At 62 and in the best health he had been for years, Robert Pullan went to a new family doctor. The exam went well and the bloodwork results were good. “At the last mome nt, walking out the door, my doctor aske d if I had a PSA te st re ce ntly. I hadnʼt had one in maybe five years,” he says. So his doctor gave him a new re quisition for a PSA te st – which was not part of the original bloodwork. Since the test is not funded in Ontario, he had to pay: “It bothered me that something like this, not so much for me, but for many others – that $30 is a big deal. The last thing would be to discourage people for financial reasons.” Two weeks after visiting the lab, his doctorʼs office called. He needed to see a specialist as soon as possible. And so be gan his prostate cance r journe y – months of appointme nts, scans, tre atme nts and hospital visits. A biopsy showe d aggre ssive cance r ne ar the point of spre ading. Robe rt starte d brachythe rapy (a one -time proce dure using ne e dle s to de live r high-dose rate radiation dire ctly to the cance r) and the n five we e ks of e xte rnal be am radiation. Following that, he we nt on 15 months of hormone the rapy to stop the production of male hormones the cancer uses to grow. Four years later, he is back to normal after experiencing side effects like urinary incontinence, erectile dysfunction and weight gain. Recently, Robert returned to his family physician to thank him. His doctor told him that if he had not taken the test, most likely they would not be having their conversation that day.
2018 - 2019 REPORT TO THE COMMUNITY
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EDUCATIONAL RESOURCES A cancer diagnosis can be scary and confusing. It is challenging to make o NL – 7 sense of all the information. Having access to trustworthy prostate cancer Stats: – 23families feel less scared and more information can help patients o andNS their in control. We make that information when it is needed most. · 12 new webinars presented by expert researchers o PE – available 1 and health professionals
·
·
Topics included: prostate cancer 101, prevention, survivorship, side effects, physical activity, pathology reports
12
·
2,100 total views
·
EA participation by province (on-demand) o
o
Common side effects of o MB – 54 prostate cancer treatments | o ON – 862 Prevention | Pathology reports | Prostate Cancer 101 o QC – 93 | Physical activity | o NB – 57 Survivorship |
·
o
NL – 66
o
NS – 88
o
PEI – 13
o
Territories – 6
o
US – 25
o
BC – 32
o
AB – 35
o
SK – 12
o
QC – 84
o
NB – 7
MOST REQUESTED
total views
Support Groups – 11,000
Most popular resources: Brochures A, B and C, PC facts postcard, PSA postcard, nutrition guide
·
VIEWERS BYCanada PROVINCE 47 Prostate Cancer Network groups, 43 independent – 90 groups total
6 Information is e sse ntial for those impacte dNLby66 prostate cance r. Re ad how AB MB one survivor be ne fite d from Prostate PEI CancerSK Canada54 information and now QC pays it forward. 279 ON 13 93 NB 67 862 57 NS
BC
312
88
PRINT RESOURCES Ed Rose knew he was at risk of prostate cancer because his
466
grandfather and father both had it. That led him to monitor his prostate through regular PSA testing with his doctor.
orders fulfilled, resulting in
In 2007, at 57, he received the news that his PSA level was high. A specialist confirmed prostate cancer. After studying treatment options, he chose surgery.
100,000+
466 re source orde rs distribute d re ce ive d from public, support groups, institutions
o MB – 10 Public 40,000 o ON – 254
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NWT
SK – 67
10,000
·
BC – 312
o INCLUDED: AB – 279 TOPICS o
Resource distribution:
new webinars presented by –expert o Public 40,00 researchers and o professionals Institutions – 52,000 health
resources distributed
“I had a ve ry good re cove ry and life is pre tty normal, which is a good thing to say because thatʼs what you want. Iʼve been lucky,” Ed says. While he had heard of Prostate Cancer Canada before his cancer, he had not thought much about it. After diagnosis, his doctor gave him brochures from the organization with Institutions Support Groups questions and answers. He visit
52,000
11,000
EDUCATIONAL RESOURCES
Paying it forward Ed Rose knew he was at risk of prostate cancer because his grandfathe r and fathe r both had it. That le d him to monitor his prostate through regular PSA testing with his doctor. In 2007, at 57, he re ce ive d the ne ws that his PSA le ve l was high. A spe cialist confirme d prostate cance r. Afte r studying treatment options, he chose surgery. “I had a very good recovery and life is pretty normal, which is a good thing to say because thatʼs what you want. Iʼve been lucky,” Ed says. While he had he ard of Prostate Cance r Canada be fore his cance r, he had not thought much about it. Afte r diagnosis, his doctor gave him brochure s from Prostate Cance r Canada with que stions and answe rs. He visite d the website for more information. Ed is now re tire d and whe n he was re ady to volunte e r in 2016, the choice was easy: “It was a logical fit having benefited from the educational materials.” On Tuesdays when he is in Toronto – he and his partner travel frequently – Ed is at the National Office front desk. A big part of the role is taking calls:
“In answering the phones I’m helping them get to where they need to. Families are sometimes at a loss as to what to do. The calls I get are more from family members, wife or daughter or son than the person diagnosed. I send out brochures, they help a person adjust. The educational component is very important.” 2018 - 2019 REPORT TO THE COMMUNITY
Sharing information is the most re warding part of his volunte e ring, although he is always re ady to he lp with anything from stuffing envelopes to taking donations or making mailing list address changes. Anne Breakey Hart is Prostate Cancer Canadaʼs Manager of Volunte e r Engage me nt. She says: “The pre se nce of a volunteer, who has lived through prostate cancer and in Edʼs case , also care d for a partne r with prostate cance r, is incre dibly valuable . Itʼs powe rful whe n staff, patie nts, survivors and family members interact with him. It makes what weʼre doing here real for the team and makes a huge diffe re nce for those going through the prostate cance r journey.”
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SUPPORT GROUPS & VOLUNTEERS Support groups and volunteer leaders ensure no one feels alone during their prostate cancer journey.
Moving the dial in the black community Black me n are at a highe r risk of de ve loping prostate cancer than other Canadian men. A group in Nova Scotia is raising awareness in the black community so men can take better care of their health. In 2011, Blacks in Nova Scotia (BINS) began in the Historic Black Community of Upper Hammonds Plains, and has grown since then. “We starte d as a prostate cance r support group to e ncourage me n not to be shy about the ir he alth,” says We nde ll Ske ir (first at left in above photo), se cre tary of BINS and a survivor. “We were aware that the prevalence of prostate cancer is very high in general, and even higher in black men.” What starte d small has now grown into a move me nt. BINS have visited other black communities in the Halifax me tro are a to raise aware ne ss and offe r support. Many non-me mbe rs visit to speak with othe rs who have face d the disease. Guest speakers include medical professionals and even spouses who offer their perspective as partners. The group is also open to women and those outside of the
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black community. BINS also hosts a Do it for dads walk/ run in support of Prostate Cancer Canada. “Weʼve opened the group to black menʼs health in general as well,” says Wendell. “Every meeting we learn something ne w. Othe r brothe rhood groups who visit say the yʼve never been to a group like ours where they hear 20 mature men talking so freely about their health.” “It originated because prostate cancer disproportionately affects black men. Because of the group, thereʼs a lot more awareness in the community. We often get younger men coming because their brothers or fathers were diagnosed with prostate cancer.” The group has made a tre me ndous diffe re nce . “The re ʼs knowle dge out the re now,” says We nde ll. “Pe ople in our community have a be tte r unde rstanding. We e ncourage me n to liste n to the ir body, and to the advice of the ir doctors, but also to ask questions. You have to speak up for yourself.”
Volunteering in Numbers
2,600
volunteers
300 new volunteers
75 communities 50 volunteer roles 15,500 HOURS OF VOLUNTEER TIME DONATED
“
2,500 SHIFTS
I love knowing that we are all there for the same cause. Hearing everyone’s stories and the reasons for their involvement with Prostate Cancer Canada makes me feel that we are all making a difference together.
”
– Sandra (Event volunteer) // Page
VOLUNTEERS
The generosity of our volunteers raising awareness and funds is helping save and improve skills to provide leadership, helping select the best research projects or speaking with
Making a hero proud At 25, prostate cancer was the last thing on Zack Smartʼs mind. Then his dad was diagnosed. “My dad seemed invincible, so it was a shock,” Zack says. “He was this strong guy who had ne ve r be e n sick. You always think these things wonʼt happen to your family.” After surgery and a swift recovery, Zackʼs dad is feeling great. But Zack now knows heʼs at greater risk. “My brother and I will have to get checked earlier than we normally would, and possibly deal with it someday.” After graduating and getting his journalism career started, Zack wante d to give back. “I kne w I wante d it to be something personally meaningful to me,” he says. “Prostate Cance r Canada spoke to me in ways that othe r charitie s didnʼt.” “After I leave the office I have a natural high because I know I did something good,” he says. “Maybe Iʼm just doing data entry, but it means Iʼm part of the team and helping out.” Both Zack and his dadʼs perspectives have changed. The y have le arne d to slow down and e njoy what come s the ir way. “We went on a trip recently to Ireland,” says Zack. “It was one of the best times of my entire life. Not that he took those types of things for granted before, but he seizes the day and savours every moment.”
Learn more about volunteering at prostatecancer.ca/volunteer // Page 32
VOLUNTEERS
more lives – whether it is giving time to support events, in our offices, using specific governments.
It’s personal Maryann Istiloglu lost he r fathe r to prostate cance r in 2015. He was diagnose d in 1994 and tre ate d with radiation. Twenty years later, it came back and spread to his bones. It was a long journey for her family. Each member played the ir role , supporting him in diffe re nt ways. Maryann e nsure d he r dad unde rstood what the doctors we re telling him, and what different decisions would mean. “It could be ove rwhe lming,” she says. “I always we nt to his me dical appointme nts and would bre ak down the me dical te rms into simple r language . It was important that he be give n the information he ne e de d to understand, so that he could take charge of whatever decisions needed to be made.” English was not he r fathe rʼs first language , so Maryann atte nde d all me dical appointme nts at his re que st, making sure he felt supported and could properly express himself with his medical team. “My be ing with him he lpe d him fe e l confide nt that he had some one in his corne r, so he unde rstood and was understood,” she says. She recently took a volunteer role with Prostate Cancer
“
Canada as a community representative on a panel that makes decisions about research funding. This gave her a unique perspective on the selection of the best projects. Maryann hopes her involvement will help other families facing the disease live with the diagnosis and outcome “in a way that is kind, humane and effective.”
I volunteer because it’s personal, it’s important, and I hope to make a bit of a difference. The team is incredibly welcoming and helps you find the place you can contribute the most.
2018 - 2019 REPORT TO THE COMMUNITY
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FINANCIALS TOTAL MISSION PROGRAMS
Your Donation in Action
64.3%
RESEARCH
80.6%
of total mission programs
TOTAL EXPENDITURE
We are very grateful to our generous donors. Together, we have achieved 25 years of impact. Our efforts have saved and improved lives. Your generosity today is helping us create a future of hope where we will save and improve more lives.
PUBLIC EDUCATION, ADVOCACY, AWARENESS, SUPPORT GROUPS, SURVIVORSHIP
$13,862,000
19.4%
of total mission programs
GENERAL & ADMIN FUNDRAISING
9.1%
26.6%
Mission Investment
80.6%
(in thousands of dollars)
Research Support groups / survivorship Public education and awareness Advocacy
5.9%
3.5% 10% // Page 34
Total:
7,184 530 893 311
8,918
BOARD OF DIRECTORS Thank you to our dedicated 2018/2019 Board of Directors. View more information on each of them at prostatecancer.ca/BOD
Christopher Wein Board Chair
David Woollcombe Vice Chair
Dan Amadori
Mary Larson
David Bradley
Kent J. MacIntyre
Randy Dalton
George Mohacsi
Ed Giacomelli
Dee Patterson
Kevin Gregor
Ken Power
Jean Marie Heimrath (until December 31, 2018)
Derek Senft
Stephen A. Pike Secretary & Treasurer
Rick Koshman (until September 26, 2018)
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DONOR RECOGNITION DONOR RECOGNITION Prostate Cancer Canada extends a huge thank you to our partners, supporters, and individual and corporate donors. Your support allows us to do everything we can to prevent prostate cancer, save lives and support those facing this disease and their families. Your generosity funds vital research and support programs.
Corporations & Foundations $5,000+ 2397708 Ontario Inc. Abbvie The Aber Group ACHIEVEBLUE Alberta Chamber of Commerce Anthem Properties Arnold Bros Transport Ltd Astellas Pharma Astral Media Aurora Cannabis Inc. Avison Young - Mark Fieder Bayer Benefaction Foundation Bison Transport Blakes BMO Bank of Montreal Bruce Power Budget Propane Corporation Cadillac Fairview Corporation Ltd Calgary Flames Foundation The Canadian Brewhouse Canadian National Railways CBRE Charles Norcliffe Baker & Thelma __Scott Baker Foundation CIBC Capital Markets ClubLink Coquitlam College Curate Mobile D.H. Gordon Foundation DBRS Limited Dorel Industries Dosylen Investments Inc. Echelon Wealth Partners EllisDon Endla and John Gilmour Foundation EQ Bank Evald Torokvei Foundation EY
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Fasken Martineau DuMoulin LLP Fengate Capital Management Ferring Pharmaceuticals Fleming Foundation Fraser Family Foundation The Globe and Mail Gravitas Securities Inc. Hill Street Beverage Company Hudson Bay Foundation Hydro One Employees' and Pensioners' Charity International Union of Operating Engineers Local 793 Janssen Pharmaceuticals Inc Jilla & Robert Williams Foundation Jockey Canada Johnson & Johnson Kebet Holdings Ltd Kontact Marketing Group Leon's Furniture Limited Linamar Corporation LiUNA Liuna Local 183 LMS Limited Partnership Lohn Foundation Lucky Lacey Foundation Maritmes Energy Association McCann Canada Media City Medicine Hat Golf Tournament Michael Hill Jeweller Midland Transport Mike & MikeĘźs Organics My Tribute Gift National Events - Miscellaneous NewAd New Life Mills Newfoundland and Labrador Liquor Corporation
Ontario Chamber Plaid Network Pattison Onestop PayPal Giving Fund Canada Performance Auto Group PCC All Plaid All-Stars PCCN Bampton Inc./ Over 'N' Under Car Club Powered by Oranics Purpose Investments Quantum International Income Corp. RBC Atlantic RBC Foundation RONI Excavating Ltd. Sanofi Aventis / Sanofi Genzyme Scotiabank Senft Family Foundation Servus Credit Union snapd Inc Spark Power Corp. Stornoway Diamond Corporation Sussex Strategy Group Tandet Tersera Canada Third Eye Capital The Toronto Star Town + Country Volkswagen Traction on Demand Trillium Automobile Dealers Association UB Media Uni-Select Golf Tournament Plaid For Dad Viterra VOCM Cares Foundation Wesco Distribution Canada LP Whissell Contracting Calgary Ltd. Zoom Media
DONOR RECOGNITION RECOGNITION DONOR Blue Tie Circle Members Blue Tie Circle members are those who have advanced important work at Prostate Cancer Canada by generating $10,000 or more. William Acton Mark Allan Dan Amadori Arnold Bros. Mariangela Avila-Mullback David Baboneau Aaron Bacher Marco Beghetto The Bhalwani Family Charity Fdn David Biesinger John Boynton David Bradley Ewa Burton Don Cherry Ralph Corbett Peter Cottan Marty Cutler Randy Dalton Jeff Davison, City of Calgary Councillor Ward 6 Phil Downe The Dubczak Family Sharhoz Ehsan David Elsner Saul Feldberg
Robyn Feldberg Rochelle Feldberg Ted Fletcher Ed Giacomelli Dan Gignac Lee Grimshaw Adam Grosvenor Ana Grubor Klaus Hartmann Brett Halliday Evan Hickey Rebecca Hinchcliffe Prostate Extreme Team Dave Jenkinson David Johnson Craig Keating Ian Kerr Rick Koshman Joseph Mancinelli Victoria Mancinelli Kent MacIntyre Eric McCormack The McInnes Family Marianne Mota Scott Naish
Edward (Ted) Nash Lisa Nicoll Boris Novansky Karra Nowosiad David Oldham Frankel Picov Family Stephen A. Pike James Richl Rocco and Rhonnie Rossi Dale Schneider Derek Senft Peter Shippen Geoff & Megan Smith Robin Speer Ken Steward Roger Swainson Tandet Plaid for Dad Team Michael Turner Christopher Wein Terry White David Woollcombe
Donors $2,500+ George Armoyan Brian Banks Tim Bowman Michael Brisseau Glen Chu Peter Coleridge + Dr. Patrick Smith Terence Collier John + Mary Crocker Laurie Edwards David Elliott David Gilliland Gordon + Donna Grainger
2018 - 2019 REPORT TO THE COMMUNITY
Rob Hartvikson Rudolph Hoenson John Ing Raymond Jourdain Steve Kassimatis Cary Lavine and Sarah Paul Peter Leggat Peter Lisena Christian McNeill Sandy Munro Dr. F. Edward Murdoch Inc. David Pauli Ian & Michelle Pearce
Gary Reid Oliver Ricardo Joel Tucker Bill Whitehead Deryck Williams Lynda Woodhouse Dov Zevy Richard & Karen Zurawski
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Contact us at: info@prostatecancer.ca 1-888-255-0333 416-441-2131 prostatecancer.ca @ProstateCancerC
/ProstateCancerCanada
2 Lombard Streeet, 3rd Floor, Toronto, ON M5C 1M1
Charitable registration number: BN 89127 0944 RR0001
/Prostate-Cancer-Canada
1809 Barrington Street, Suite 810, Halifax, NS B3J 3K8
@ProstateCancerC