Issues impacting cancer survivorsResults of CCSN survey

Jackie ManthornePresident & CEO, CCSN

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.

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.

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

Issues impacting cancer survivorsResults of CCSN Survey

• June 2013: CCSN surveyed membership to gather insights on:– cancer survivorship issues– Patient experiences with healthcare system during

& following treatment

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

Survey resultsPsychological/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

Survey resultsPsychological/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.”

Survey resultsPsychological/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.”

Survey resultsPsychological/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!”

Survey resultsChanges 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.”

Survey resultsChanges 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.

Survey resultsChanges 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.”

Survey resultsChanges 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!”

Survey resultsChanges 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.

Survey resultsChanges 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.”

Léger survey resultsChallenges 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.

Léger survey resultsChallenges 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.

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.

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.

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.

How to reach us

Canadian Cancer Survivor Network1750 Courtwood Crescent, Suite 210Ottawa, ON K2C 2B5Telephone: 613-898-1871

E-mail: jmanthorne@survivornet.ca or info@survivornet.ca Web site: www.survivornet.caBlog: http://jackiemanthornescancerblog.blogspot.com/Twitter: @survivornet.ca, @bestbreastnews, @prostatepostFacebook: www.facebook.com/CanadianSurvivorNet Weekly newsletter: http://paper.li/survivornetca/1373569518Pinterest: http://pinterest.com/survivornetwork/