What Men Told Us: Prostate Cancer Survey Results, Oct. 1, 2020

WHAT MEN TOLD US:
PROSTATE CANCER SURVEY RESULTS
Webinar
October 1, 2020
1:00 – 2:00 p.m.

PRESENTATION OUTLINE
1. About Prostate Cancer in Canada
2. CCSN & The Prostate Cancer Survey
3. Reviewing the Survey Results
i. Part A: Survey Demographics & General Information
ii. Part B: The Patient (Treatment & Treatment-Related
Challenges
iii. Part C: The Patient (Supportive Care – An Unmet Need)
iv. Part D: Survivorship
v. Part E: The Caregiver (An Invaluable but
Overlooked Perspective)
4. Conclusion: Three Overarching Themes
5. Questions?
2

ABOUT PROSTATE CANCER IN CANADA
• Prostate cancer is the most commonly diagnosed cancer among Canadian men
• 22,900 men were diagnosed with the disease in 20191
accounting for 1 in 5
(20%) of all new cancer cases in men
• 3rd leading cause of death from cancer in men in Canada, accounting for 10% of
all cancer death1
1. Canadian Cancer Society, www.cancer.ca/en/cancer-information/cancer-type/prostate/research
3

ABOUT PROSTATE CANCER IN CANADA
• 1 in 9 males is expected to be diagnosed with prostate cancer in
their lifetime.2
• Most prostate cancers are expected to occur in people 50 years of
age or older
• Dramatic variation in prostate cancer incidence across the country
likely due to use of prostate-specific antigen (PSA) testing rather
than differences in risk2
• Survival rates have increased over the years resulting from:
1. improved screening
2. more treatment options
2. Canadian Cancer Statistics, 2019
4

CCSN & THE PROSTATE CANCER SURVEY
To help capture the patient and caregiver perspective on the
prostate cancer journey spanning from diagnosis to
survivorship, CCSN employed a thoughtful and
comprehensive national prostate cancer survey through
Survey Monkey from September 12 – October 3, 2018.
Purpose of the National Survey was to help the prostate
cancer community better understand the journey that
prostate cancer patients, caregivers and survivors
experience during their transition from diagnosis, to
treatment to follow-up and finally to survivorship.
Objective: Key messages found in the Survey Results would
be utilized in an advocacy campaign, designed to improve
the quality of life for prostate cancer patients across the
continuum of prostate cancer care and journey for
Canadians facing a diagnosis of prostate cancer
5

PROSTATE CANCER SURVEY REPORT FINDINGS
6

PART A:
SURVEY DEMOGRAPHICS & GENERAL INFORMATION
(Q1-6)
Q3: 80% of patients were diagnosed between 51-70 years of age
Q4: 86% of patients and survivors had their disease ‘diagnosed’ through PSA testing, followed by
• Digital Rectal Exam
• Description of Symptoms and
• Bloodwork
7
Total: 137 Respondents
14
Caregivers
59
Patients
in Active
Treatment
64
Survivors
134 Respondents
from Canada
(except NWT,
Yukon &
Nunavut)
3 Respondents
from outside of
Canada (Florida,
Texas, & Australia)

PART A:
SURVEY DEMOGRAPHICS & GENERAL INFORMATION
(Q1-6)
• Q6 stratified patients
according to where they
were in their disease
journey.
• Disease stage distribution
ranged from Just
Diagnosed to Stage IV
Patients
• The Other Category (22%)
identified patients who
experienced a recurrence
as well as patients who
assumed a watchful
waiting approach
8%
20%
14%
16%
16%
12%
22%
Stages of Prostate Cancer
Just Diagnosed - 8% In Treatment - 20% Stage I - 14% High PSA Test - 16%
Middle Stage -16% Stage IV -12% Other - 22%
8

PART B:
THE PATIENT: THE TREATMENT OF PROSTATE CANCER & THE IDENTIFICATION OF TREATMENT-
RELATED CHALLENGES
(Q7-22)
• The management of prostate cancer has improved over the past 20 years,
resulting in improved patient outcomes and declining death rates (2.8% per year
since 1994)3
• Treatment Improvements are due to:
– the introduction of hormonal therapy for early and advanced staged disease and
– advances in radiation therapy.3
• For patients who undergo therapies, however, there may still be challenges they
face such as:
* treatment induced toxicities
* Coping with long term side effects of treatments
* Fear of a recurrence
* Self esteem issues and more
These issues were thoughtfully addressed through the CCSN Survey Questions and
patients provided meaningful input
3. Canadian Cancer Statistics 2019: http://www.cancer.ca/~/media/cancer.ca/CW/cancer%20information/cancer%20101/Canadian%20cancer%20statistics/Canadian-Cancer-Statistics-
2019-EN.pdf?la=en p. 43
9

PART B:
THE PATIENT: THE TREATMENT OF PROSTATE CANCER & THE IDENTIFICATION OF
TREATMENT-RELATED CHALLENGES
(Q7-22)
10

PART B:
THE PATIENT: THE TREATMENT OF PROSTATE CANCER & THE IDENTIFICATION OF TREATMENT-RELATED
CHALLENGES
(Q7-22)
Q9: 36% patients selected “Significant Side Effects of Treatment” as an issue faced
during their prostate cancer treatment.
“Side effects of treatment while not severe are
impactful on quality of life and mental health”
Q7: identified sexual function and incontinence as the most notable treatment-
related issues:
“I feel good but my sex life is not.”
“I suffer from involuntary urinary incontinence and
I must change my Depends diapers at least 4-5 times daily….”
“Following treatments: issues with bowels, bladder and
sexual function.”
Q13 asked patients to specifically list the main issues they faced once their
treatments were completed: 34% selected significant or long-term physical side
effects of treatment and 14% selected psychological/mental issues:
“Severe urinary and bowel issues continuing 17 months after completing treatment”
11

PART B:
CHALLENGES
(Q7-22)
Watchful Waiting (Observation): a management option intended for the
following prostate cancer patients:
Watchful Waiting is also a way of monitoring prostate cancer that isn’t
causing any symptoms or problems. The aim is to keep an eye on the cancer
over the long term and avoid treatment unless the patient becomes
symptomatic.
12
Men who are
not likely to
benefit from
treatment such
as surgery or
radiation
therapy
Men with
serious
health
problems
Older Men

PART B:
CHALLENGES
(Q7-22)
Q11 asked if patients assumed a watchful waiting approach to the management of
their cancer. 46% responded “Yes” and they went on to describe any downfalls to
assuming such an approach:
“Always on your mind. Concern of it getting worse while waiting.”
“The first year is difficult waiting for the PSA results but the more it is
stable the more relaxed I became.”
“Always wondering if it is getting worse or spreading.”
“Just knowing that you have this little time bomb.”
Q19 results identified fatigue, bowel & bladder functions, worry and stress as the
barriers in their return to work after treatment.
13

PART B:
THE PATIENT: THE TREATMENT OF PROSTATE CANCER & THE IDENTIFICATION OF TREATMENT-RELATED CHALLENGES
(Q7-22)
Q21 asked patients about their main health concerns post treatment:
50%
36%
36%
36%
30%
24%
Patients' Main Health Concerns Post Treatment
Lack of Sexual Intimacy/Impotence - 50% Fatigue - 36% Incontinence - 36%
Spreading of Cancer to Bone - 36% Long Term Effects of Treatment - 30% Insomnia - 24%
“Future treatments
when necessary will
severely impact sexual
health. Hormone
treatments kill libido
and result in impotence
(irreversible after
extended treatment)
among other significant
adverse effects.”
14

PART B:
THE PATIENT: THE TREATMENT OF PROSTATE CANCER & THE IDENTIFICATION OF TREATMENT-RELATED CHALLENGES
(Q7-22)
Q22 asked the advanced stage patient what their key concerns were in terms of the
management of the disease. Four (4) areas of concern were identified by this
patient population:
4 AREAS
OF
CONCERN
Proper
Care
Pain
Manage-
ment
Family
Support
End of
Life
Support
“No pain now but worry about
it being in the future. Also not
sure how far spousal care will
continue in future towards
end of life.”
“How to accept all of this and
still plan for future without
giving up and having someone
that loves you has helped me
live.”
“A difficult question I hope that
chemo and hormone treatment
will help in the long run or give
me a chance of living out my
days in peace of body and mind.”
“I just wonder what is available
to me after I finish the current
treatment I am on.”
15

PART C:
THE PATIENT: PROVISION OF SUPPORTIVE CARE – AN UNMET NEED
Q23-29
Prostate cancer patients may face a host of treatment-induced issues that can impact quality of life
resulting from:
Treatments can impact patients both physically and psychologically.
Supportive Care Programs may help patients meet the physical, emotional and practical challenges
associated with the prostate cancer journey.
16
• Sexual
Dysfunction
• Urinary
Incontinence
2 Most Frequently
Reported
Treatment-Induced
Side Effects
Radical Prostatectomy
(Surgical removal of
the prostate gland and
tissue)
Radiation Therapy
Systemic Therapy
(Androgen Deprivation
Therapy – ADT)
Patients
struggle
with these
side effects

PART C:
Q23-29
Supportive Care Programs Can:
Information-Based
Support
•Provide information to newly diagnosed patients on treatment options
•Provide information that focuses entirely on the sexual side effects of treatments and
sexual rehabilitation
• Provide information on the identification and management of all treatment-induced
side effects
• Provide information on how to assume a healthy lifestyle during and post treatment
Psychosocial-Based
Support
• Provide psychosocial support services offered for patients
experiencing anxiety, fear, isolation and distress resulting from a
diagnosis of prostate cancer or effects from prostate cancer
treatments.
17

PART C: THE PATIENT: PROVISION OF SUPPORTIVE CARE – AN UNMET NEED
Q23-29
Q23 results identified the issues patients faced when trying to secure support for themselves or their
caregiver:
20%
8%
6%
4%
2%
2%
2%
2%
2%
2%
2%
Issues Experienced By Patients Trying to Secure Support
Lack of Knowledge of What is Available - 20% Other - 8%
Not Knowing Who To Call - 6% Geographical Remoteness - 4%
Not Being Able to Get Enough Respite Care Hrs - 2% Always Getting Different Caregivers - 2%
Trying to Adjust to Homecare Options Availability - 2% Lack of Caregiver Medical Credentials - 2%
Inability of Caregiver to help With Tailored Needs - 2% Inability of Caregiver to Administer Pain Meds - 2%
Monetary Concerns - 2%
18
“I have contacted local
support groups but none
have had my kind of
treatments so got no
response. Met with
Provincial Cancer counselor;
he only suggested I
journalize feelings – I did not
find that to be remotely
useful.”

PART C:
Q23-29
• Q24 asked if rehabilitation services were offered during patients’ treatments and
64% responded “NO”.
• Q27 specifically asked patients if they have any unmet needs they would wish to
have addressed through cancer rehabilitation. Patients provided open-ended
replies which once again dealt with treatment induced side effects:
“Maintaining physical fitness”
“Rehab management of symptoms.”
“Would be nice to have more local support from people having gone through
the same cancer. There is a local support group, but it is highly insignificant.”
“Management of symptoms – primarily pain management and urinary
side effects.”
“Managing ADT side effects.”
“Management of symptoms, sexual health.”
Sexual dysfunction and urinary incontinence were the 2 unmet needs that patients
wished to see addressed through cancer rehabilitation and expressed a need for
support and management of these life altering side effects.
19

PART C:
Q23-29
Q28 asked if there were any additional issues impacting prostate cancer patients. The following issues were
identified:
1. Provision of supportive care for patients was a recurring theme
2. Access to accurate information on the management of the disease
The provision of information can empower patients and can facilitate increased understanding of their
disease and how the disease is treated. Information can be delivered by health care providers, nurses and
charities.
“Because men are less inclined to seek support and create supporting networks, we have to rely on
our physicians to get maximum info. As most of them are over extended and busy, it is very difficult to
get proper info and support.”
“Sexual health, impotence, coverage of erectile dysfunction drugs.”
“Having access to someone initially to put the situation in perspective…Hearing you have cancer
and then waiting to obtain good reliable info is difficult…I can just imagine someone with a more
serious case that would be life threatening – very scary!!!”
“1. How to decide which treatments to have; and 2. What to expect during
treatments.”
“Education about the disease and its ideopathology.”
20

PART C:
Q23-29
Briefly, in this section of the survey, patients
highlighted the need for supportive care to:
a. Handle treatment-induced side effects (i.e. sexual
dysfunction and urinary incontinence)
b. Include accurate information regarding the
management of the disease. One patient
commented: “I think people today rely on Google to find out the
information they think they want and it is not always the best information”
c. Gain access to emotional/psychosocial support
services to help address fears, anxiety and distress
21

PART D:
SURVIVORSHIP: HOW DO WE BEST MOVE FORWARD?
Q30-43
Better
Screening
More
Treatment
Options
Higher
Survival
Rates
22

PART D:
Q30-43
• The months and years after treatment is known as the survivorship period.
• A new set of challenges emerge and support is required for men as they move forward during this period
• Q30 identified “Treatment Side Effects” and “Psychological/Mental Health Issues” as the main issues faced by
survivors
71%
33%
21%
13%
13%
7% 3%
Survivor Issues Post Treatment (Q30)
Side Effects of Treatment - 71% Psychological/Mental Health Issues - 33%
Change to Family Dynamic - 21% None - 13%
Other - 13% Difficulties transitioning back to work - 7%
Financial Issues 3%
“Minor
urinary
incontinence.
Erectile
dysfunction.”
“Extreme
incontinence.
Change pads
3-4 times
daily.”
“Because
radiation
virtually
destroyed
my
prostate, I
am
impotent
and no
longer able
to maintain
an
erection.”
23

PART D:
Q30-43
• When survivors were asked what they found most helpful in the health care system during
and post-treatment (Q35), the themes that emerged in PART B (Patient’s Perspective),
also emerged from the survivor’s perspective.
Information
on
Treatments &
Side Effects
Supportive
Care for Tx-
Induced Side
Effects
Supportive
Care for
Emotional &
Psychosocial
Support
Meaningful
Relationships
with HCPs
24

PART D:
Q30-43
• Survivors identified
the following
determinants of
Quality of Life when
living with prostate
cancer (Q37).
• Urinary Incontinence,
Sexual Dysfunction
and Survival ranked
among the top 3.
Urinary
Incontinence, 24%
Survival, 22%
Sexual
Dysfunction, 12%
Psychosocial
Support, 2%
Other, 40%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Urinary
Incontinence
Survival Sexual
Dysfunction
Psychosocial
Support
Other
Percentage
Determinants of Quality of Health
Determinants of Health for Prostate Cancer Survivors
25

PART D:
Q30-43
• Issues that resonated with survivors throughout Q38-43, consistently dealt with
the following 4 themes:
Access to
information on
treatment-induced
side effects
Access to Supportive
Care Services to
Address Unmet
Psychosocial Needs
Access to
Rehabilitation
Services to Assist
with Side Effects
Promoting National
Awareness of
Prostate Cancer &
Utility of PSA Testing
26

PART E:
THE CAREGIVER – AN INVALUABLE PERSPECTIVE OFTEN OVERLOOKED
Q44-49
• Prostate cancer diagnosis can be equally frightening for the caregiver
• Who is the Caregiver? Spouse, family member, friend or loved one.
• Role of the Caregiver? Medical Translator, Information specialist,
Financial advisor, Psychosocial expert, and so much more!
• The role commands respect as they undergo
enormous challenges supporting a
man with prostate cancer, regardless
of disease stage.
• 14 Caregivers responded to the survey
in a thoughtful and informative manner
27

PART E:
Q44-49
77%
69%
69%
69%
61%
61%
54%
54%
46%
39%
31%
Issues Faced By Caregivers While Caring For Patients (Q44)
Emotional Drain and/or Trauma For Caregiver - 77% Insomnia - 69%
Hours Spent in Medical Appointments - 69% Lifestyle Changes - 69%
Physical Fatigue - 61% Ongoing Worry about Prognosis - 61%
Management of Side Effects - 54% Inability to Plan Ahead - 54%
Hours Spent on Medical Information Seeking - 46% Weekly Volume of Hours Needed from a Caregiver - 39%
Lack of Medical Know-How - 31%
28

PART E:
Q44-49
• Q45 asked where does the caregiver seek support for themselves?
54% of the respondents selected “Through Friends and Family and Reading Books
and/or Websites”. No one selected a patient organization.
• Q46 asked Caregivers what support services could be improved upon for
caregivers of individuals with prostate cancer. The most popularly furnished open
ended reply (62%) was:
“To be made aware that there are organizations and support groups”
• The need for supportive care services was clearly top of mind for caregivers:
“I wish there was a support group for caregivers, close to where I live.”
“Prostate cancer group meeting at the hospital…”
“Meetings with other caregivers.”
• When asked what issues they encountered in securing support for themselves or
for the patient (Q47), 46% identified “a lack of knowledge of what is available”
and 23% identified “Not knowing who to call”.
29

PART E:
Q44-49
• Q49 asked caregivers to share additional information. Five themes emerged:
Inadequate provision of
information by Treating
Specialist
Emphasizing the
adoption of a healthy
lifestyle in the
management of
Prostate Cancer
Accessing Online
Prostate Cancer Forums
for Moral Support for
Women/Caregivers
Advancing Prostate
Cancer Awareness,
Particularly in Smaller
Cities and Towns
Furnishing the
Caregiver with Superior
Knowledge Base and
Understanding of
Palliative Care Services
30

SURVEY REPORT CONCLUSION: OVERARCHING THEMES
The Survey Report captured 3 overarching critical themes
that resonated consistently throughout the survey results
from patients, survivors and caregivers
31

i. Assistance Dealing with Treatment-induced Side Effects
(specifically: Sexual Dysfunction & Urinary Incontinence)
TREATMENT
INDUCED SIDE
EFFECTS
Recognize Side
Effects are Life
Changing
Recognize Side
Effects Can
Reduce QoL
These Side
Effects Increase
Anxiety
Furnish Info on
mgt, severity &
duration of side
effects &
practical support
Access
additional
therapeutic
options for side
effects
Access to cancer
specialist, nurses
& psychosexual
support for side
effects
32

ii. Provision of Supportive Care Services: recurring theme throughout
the entire survey from patients, survivors and caregivers, highlighting
the need to:
Handle treatment-induced
side effects (urinary
incontinence & erectile
dysfunction)
Include accurate information
regarding the management
of the disease
Gain access to emotional
support or psychosocial
services to help address
fears/anxiety or distress
surrounding therapies
33

iii. Timely Access to Treatment & Information on the Management of
the Disease, Including Side Effects
Proceeding to a
timely consult was
fraught with anxiety
Provision of
information on
prostate cancer was
not timely
Need to access
treatment in
expedited fashion
Felt unprepared for
severity and duration
of treatment-induced
side effects
Acknowledge care
burden on caregivers
and provide access to
support
34

LAST THOUGHTS….
The CCSN Prostate Cancer Survey Report identified some unmet supportive care needs
and information-based needs. Providing men with supportive care services can bring
them out of a sense of isolation and loneliness -
and provide them with the tools to speak about their disease with ease and confidence,
allowing them to exchange ideas and tips with others going through the journey.
All stakeholders need to come together to support the prostate cancer patient
population and their caregivers to ensure they are living productive and meaningful lives.
35

THANK YOU!
QUESTIONS?
For a copy of the full report, please visit the CCSN website:
https://survivornet.ca/wp-content/uploads/2020/08/PROSTATE-CANCER-
REPORT.pdf?fbclid=IwAR2sAGKBEWk-V_V5zgS0yv5f9d8hrM1_VHJY3eswBRwQSKHT2FMcrPlUos4
Canadian Cancer Survivor Network Contact Info
1750 Courtwood Crescent, Suite 210
Ottawa, ON K2C 2B5
Telephone / Téléphone : 613-898-1871
E-mail: jmanthorne@survivornet.ca or info@survivornet.ca
Website: www.survivornet.ca
Twitter: @survivornetca
Facebook: www.facebook.com/CanadianSurvivorNet
Instagram: @survivornet_ca
Pinterest: http://pinterest.com/survivornetwork/
36

What Men Told Us: Prostate Cancer Survey Results, Oct. 1, 2020

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What Men Told Us: Prostate Cancer Survey Results, Oct. 1, 2020