Jackie Manthorne's presentation from the CAPO conference covers many issues that cancer survivors face today, based on a survey done by the Canadian Cancer Survivor Network in 2013.

1. Issues impacting cancer survivors
Results of CCSN survey
Jackie Manthorne
President & CEO, CCSN

2. About CCSN
• CCSN is national organization that works to
connect patients, survivors and other
stakeholder groups with decision makers and
the wider community to engage in discussion
and to act on evidence-based best practices to
alleviate the medical, emotional, financial and
social costs of cancer and encourage research
on ways to overcome barriers to optimal
cancer care and follow-up for survivors in
Canada.

3. Activities
• CCSN:
– Asks questions of parties in federal, provincial &
territorial elections.
– Makes submissions to the pan-Canadian Drug
Oncology Review (pCODR) and Common Drug Review
(CDR/CADTH), INESSS, BC Pharmacare, ODBP.
– Held two Legislative Breakfasts at Queens Park to
raise awareness of metastatic prostate cancer.
– Has made presentations at the World Cancer Congress
and the Economic Club of Canada, among others.

4. More Activities
• Is offering two free webinar series of 8 webinars
each in 2014:
– Advocacy 101
– The drug approval process in Canada
• CCSN has three advisory councils composed of
patients, survivors, caregivers and family
members:
– CCSN Prostate Cancer Advisory Council
– CCSN Breast Cancer Advisory Council
– CCSN Asbestos and Mesothelioma Advisory Council

5. Issues impacting cancer survivors
Results of CCSN Survey
• June 2013: CCSN surveyed membership to
gather insights on:
– cancer survivorship issues
– Patient experiences with healthcare system during
& following treatment

6. Survey results
• 128 survey respondents
– Diagnosed with a variety of cancers
– Issues divided into five main categories
• Post-treatment issues
• Psychological/mental health issues
• Changes to the family dynamic
• Difficulties transitioning back to work
• Financial issues

7. Survey results
Psychological/Mental health issues
• Physical and psychological side effects of
treatment are wide-ranging and are the primary
concern of cancer patients and survivors.
• Because physical side effects have an effect on
how patients feel, it is difficult to separate them.
• Physical side effects from their treatment and
surgery can include:
– Lymphedema
– Facial and intestinal disfigurement
– Neuropathy
– Pain

8. Survey results
Psychological/Mental health issues
• Patients told us:
– “I had a significant defect on my face from reconstruction, so
dealing with seeing it every day was tough.”
– “Chemobrain. I mean, memory issues, difficulty sequencing. Not
being able to keep up with others.”
– “Fatigue.”
– “Impotence and incontinence after prostate cancer treatment.”
– “Radiation caused rib pain for two years.”
– “I developed neuropathy which I would like to go away.”
– “I had bladder cancer, and incontinence is an issue I have had to
face; although I understood that this could happen after
treatment and surgery, it is hard to face day after day.”

9. Survey results
Psychological/Mental health issues
• Psychological side effects:
– “I struggle with body image issues after my
mastectomy.”
– “Fear of dying before my children grow up.”
– “It is generally thought that once you have completed
treatment and a certain time has passed, you are now
‘cured.’ There is little understanding of the fear and
anxiety that every survivor feels that it could return.”
– “Fear, stress and isolation.”
– “I became the problem; I am no longer seen as a
problem solver by my children.”

10. Survey results
Psychological/Mental health issues
• Most patients reported a sense of abandonment once
cancer treatment ended:
– “I am having to deal with the loss of the people and trust
that was there while everything was being done from the
very beginning and to the last day of radiation.”
– “The 'safety net' was gone once I stopped all the visits to
the specialists.”
– “Once treatment was finished, I was on my own, working
with my family doctor. If I had any issues regarding the
cancer or problems from treatment, I would always ask
myself, how much does a family physician know about
cancer? I was always thinking that hopefully, he knows
what he is talking about!”

11. Survey results
Changes to the family dynamic
• Body image issues are cited, as are emotional
distance and in some cases separation from
spouses or partners. Respondents cited loss of
intimacy and the ability to fulfill a partner’s needs
as a frequent side effect of treatment:
– “I have trouble feeling close to my spouse at times,
and I feel no sexual desire.”
– “My husband became physically distant. He was very
helpful and always supportive but we never made love
after the chemo. Now, nine years later, it is okay.”

12. Survey results
Changes to the family dynamic
• Several patients reported that their
relationships ended as a result of their cancer.
– Partners were reportedly unable to deal with the
challenges and left because of the loss of intimacy,
or cheated on the cancer patient or survivor.
– These occurrences were linked to a sense of
isolation and depression.
– Relationships with children, parents and other
family members sometimes changed as well.

13. Survey results
Changes to the family dynamic
• “One child wanted to help me, but he was physically
affected by stomach pain and worried a lot. The other
child could not cope to see me so ill and went to live
with his father for a while. My partner seemed
supportive; however, he went off to have an affair with
someone who was very well endowed. We are no
longer together.”
• “I was a single mom wishing to spend more time with
my adult child. She was afraid she may contract cancer
and shunned me. She had difficulty being around me
and seeing me vulnerable.”

14. Survey results
Changes to the family dynamic
• “Three days after diagnosis, my boyfriend left as
he ‘couldn't handle it.’ I found people didn't know
what to say to you or they expected you to be
back to 'normal' when you are feeling anything
but normal. And when I was concerned about a
recurrence, my mother unintentionally said some
damaging words that put a strain on our
relationship for a while. She just didn't know
what to say, and told me ‘well, at least you've
lived a good life.’ I was 36!”

15. Survey results
Changes to the family dynamic
• But, the effects of cancer on patients’
relationships with the partner and family can also
bring people closer together.
• Patients reported that their relationships had
improved post-diagnosis, with families being
drawn closer together and priorities made clear.
• Some patients who had suffered a broken
relationship reported that their new relationships
were stronger than their previous, broken
relationships.

16. Survey results
Changes to the family dynamic
• “I think my family is valuing me more.”
• “My husband and I have always been close, but we are
even closer now, realizing that life is short. Little things
no longer bother us.”
• “We are more open and honest about everything:
health, emotions, love and well-being. It has created a
close bond between me and my entire family.”
• “Got divorced. But got a new partner. Life improved
greatly.”
• “We are a lot closer and tell each other "I love you" on
a daily basis.”

17. Léger survey results
Challenges for cancer caregivers
• Survey conducted in 2013.
• 301 cancer patients and 201 caregivers.
• One of the largest cancer caregiver surveys.
• Caregivers reported:
– Caregivers had more difficulties in accessing treatment and
necessary medications than patients.
– One in six patients and nearly one-third of caregivers
reported difficulty in accessing current or effective
treatment options and reimbursement of drug costs.
– More than one in 20 patients and one in five caregivers
experienced difficulty in accessing medicine.

18. Léger survey results
Challenges for cancer caregivers
– Caregivers had more difficulty finding flexible
work options and loss of salaries than patients.
– While one in five patients experienced difficulty in
finding flexible work options while battling cancer,
nearly half of caregivers struggled to integrate
care for loved ones into their work schedules,
making the management of the disease and their
income very challenging.
– Results clearly point to caregivers’ role as cancer
care navigators and managers.

19. Recommendations
• Continue cancer patient navigation post-
treatment.
– Patients, survivors and caregivers would be able to
access information, services and help from cancer
experts whenever they need it.
– Ongoing cancer navigation could also help prevent
the late diagnosis of recurrences and metastasises
and result in a better quality of life for survivors
who still suffer from treatment side effects.

20. Recommendations
• Establish ongoing and potentially life-long
rehabilitation services for all cancer patients
and survivors suffering from lymphedema,
pain and other ongoing side effects, no matter
when they occur in each patient or survivor’s
cancer journey.

21. Recommendations
• Caregivers, who reported receiving no
significant outside help other than from
friends and families, should not be left to fend
for themselves.
• Caregivers should join patients in the centre of
the circle as we move toward defining and
implementing patient-centered care.

22. How to reach us
Canadian Cancer Survivor Network
1750 Courtwood Crescent, Suite 210
Ottawa, ON K2C 2B5
Telephone: 613-898-1871
E-mail: jmanthorne@survivornet.ca or info@survivornet.ca
Web site: www.survivornet.ca
Blog: http://jackiemanthornescancerblog.blogspot.com/
Twitter: @survivornet.ca, @bestbreastnews, @prostatepost
Facebook: www.facebook.com/CanadianSurvivorNet
Weekly newsletter: http://paper.li/survivornetca/1373569518
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