Cancer Survivorship Flashcards
The number of cancer survivors is increasing
While cancer incidence rates have increased, cancer
mortality rates have fallen
1 in 2 Australian men and 1 in 3 Australian women will be diagnosed with cancer by the age of 85.
between the periods 1982–1987 and 2008–2012,
5-year relative survival increased from 46% to 67%
People with a personal history of cancer:
• ~ 15.5 million in the US
• ~ 2.5 million in the UK
• ~ 1.1 million in Australia
By 2030, the global cancer burden is expected to nearly double, growing to 21.4 million cases and 13.2 million deaths.
Survivorship
The experience of cancer diagnosis and treatment is well established in our culture => those who become ill can expect acceptance & understanding
YET until recently, the experience of surviving illness has been poorly understood
Focus of follow-up/surveillance (largely) on detection of cancer recurrence
A shift from the QUANTITY to the QUALITY of survival
Varying definitions of cancer survivorship
From diagnosis
After completing treatment
Disease-free for a certain number of years
Alive 5+ years after diagnosis (long-term survivorship)
Stages of survivorship (Mullan, 1985)
- Acute survival (<1year post-diagnosis/treatment)
- Extended survival (1-3 years post-treatment)
- Permanent survival (3+ years)
Survivorship = a distinct phase of the cancer trajectory
“Being a cancer survivor”
For many survivors life after cancer is as good
– sometimes even better than - it was before
Yet, for many others there are challenges…
§ Compared to the general population, cancer survivors:
Ø have poorer overall health (as a result of cancer and its treatment)
Ø are more likely to die from non-cancer causes
(e.g. heart disease, lung and digestive disorders,
musculoskeletal problems)
Ø have psychological and emotional problems.
What ‘adjectives’ would you use to describe a cancer survivor?
“The survivor can fit only into
pre-existent and inadequate paradigms
of the ‘normal’ or ‘chronically ill’,
into metaphors of the ‘victim’ or the ‘hero’.”
often described in terms of heroic quest or exceptional
personal qualities - may lead to expectations of gratitude for further life experiences
there is a common assumption that survivors will return ‘back to normal’ once their health returned, following their treatment
continuing existential tension of the survivor
psychopathology amongst a small subset of survivors
sub-clinical psychological problems more common
Life after cancer diagnosis and treatment…
may be more difficult and is less ‘clear cut’ than that of the active treatment phase “Then all of a sudden, like six months later (post-treatment) is when it finally hit me, and I don’t think people were prepared for it because I’ve been so strong. People looked at me and physically I’m fine and I can do everything again, I mean it took me six months before it hit me”.
CaSS - Liminality
= an enduring and dynamic existential process of accommodation and adaptation that the patient experiences during the illness trajectory
The moment of suspicion of the diagnosis is the moment when one enters CaSS/Liminality
3 main components/themes of CaSS (experienced with varying degrees by survivors):
1. CANCER PATIENTNESS
2. COMMUNICATIVE ALIENATION
3. BOUNDEDNESS
mutually interdependent and reflexively reinforcing
CASS - theme 1: “Cancer patientness”
= ongoing identification and recognition of oneself as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent/recurrent disease
Expressed in various ways:
- some dwell on how everyday life changed irreversibly
- regular reminders via check ups, side effects, media
- the body becomes a ‘house of suspicion’
- “chemobrain”
Not everyone is overwhelmed/threatened by the sense of being cancer patient some embrace it
CASS - theme 2: “Communicative alienation”
= a state of variable alienation brought about by an inability to communicate the nature of the experience of the illness, its diagnosis and treatment
• Recognition that others cannot share the trauma of the experience
• Better communication established with people with the similar experience (support groups)
• Facing mortality: survivors become ‘compulsory philosophers’
• Distancing and isolation, experienced partly as alienation, partly as a change in needs
• Strain on relationships
CASS - theme 3: “Boundedness”
= a persistent and heightened awareness of:
- uncertainty of future time
- constraints on social/working roles
- limitations in the freedom to use space
• some perceive that their restricted lives made them part of a community of disadvantaged people
SURVIVORSHIP & Discourses of identity
PERSONAL IDENTITY
= the sense of being this person, in this body with this story
Extreme experiences such as cancer produces DISCONTINUITY in the sense of identity, expressed as:
a) Discontinuity of memory
b) Discontinuity of embodiment
c) Existential disruption
d) Disruption of the memory of others
IDENTITY RECOVERY
Recovering earlier (pre-diagnosis) identity may not be possible
Change in identity can be hard for others to understand
What is important to me now?
What gives my life meaning?
• Finding a NEW NORMAL: Reconstructing loss as change without denying the loss
This may take several tries & that’s NORMAL
Most survivors will adjust in their own time and their own way
“The cancer patient can share the experience, not the cancer. Yet, it is now part of their being. It is not their partner’s cancer, but it affects their partner. It is not their family’s cancer, but it affects their family. It is not their friends’ cancer, yet their friends grieve for the challenge to longevity that it presents. It is the patient’s and the patient is the one who has to negotiate meaning from it and an identity that incorporates it”.
ISSUES IN SURVIVORSHIP: Quantitative research
Cancer survivors report issues across a wide range of areas:
• Physical (e.g. fatigue, chronic pain)
• Cognitive (e.g. memory, learning)
• Psychological (e.g. fear of recurrence, mood impairment)
• Sexual/Fertility (e.g. dyspareunia, erectile dysfunction, grief)
• Social (e.g. changed relationships with partner/family/friends)
• Financial (e.g. medical costs, difficulty recommencing employment, issues with health insurance)
• Existential (e.g. re-evaluating/changed values, goals, outlook on life)
Survivorship: UNMET NEEDS
• Most cancer survivors are able to overcome these issues
in time, but some continue to have unmet needs:
• 30% with 5+ unmet needs (Armes et al, 2009)
• 54% with 1+ unmet need (Hodgkinson et al, 2007)
• 38% with 1+ “significant” unmet need (Soothill et al, 2001)
• The greatest unmet needs in these studies are psychosocial
rather than physical, aspects of cancer survivorship.
• Existential issues most highly endorsed:
“help with concerns about the cancer coming back”
How common is Fear of Cancer Recurrence
(FCR)?
Some degree of FCR reported by ALL cancer survivors:
Some FCR: 73% Moderate FCR: 49% High FCR: 7%
(Simard S et al, FCR in adult cancer survivors: A systematic review studies, 2013)
§ FCR is often higher in CAREGIVERS than survivors
§ ~ 50% of caregivers have moderate-high FCR
§ Factors associated with high FCR in carers:
§ high FCR in person affected by cancer
§ low satisfaction with communication
§ family stressors and illness
Survivorship: Psychosocial effects
• A large US national health survey (Costanzo et al., 2009)
• Investigated psychosocial effects in 398 cancer survivors (median 10
years post-diagnosis), compared with 796 socio-demographically
matched controls
• Longitudinal (pre-post diagnosis) analyses: MENTAL HEALTH DOMAIN
IDENTIFIED as THE ONLY DIRECT IMPAIRMENT associated with
being a cancer survivor, compared to matched controls
• Age identified as an important resilience factor
Areas of IMPAIRMENT • Mental health (anxiety & depression) • Mood • Psychological wellbeing (except personal growth)
Areas of RESILIENCE
• Social wellbeing
• Spirituality
• Personal growth
Survivorship: High risk groups for poor
psychosocial functioning
- Younger (<50)
- Female
- Not married
- Psychiatric history / current psychological problems
- Poor QoL reported
- Physical morbidity
- Advanced stage of disease at diagnosis
- Low income
- Financial difficulties
- Rural location
Survivorship: Positive outcomes
62% reported at least 1 positive outcome
Females reported significantly higher levels of positive
outcomes than males (p < .000)
“…as a result of the cancer”
:
I have grown as a person 46%
I appreciate my relationships with others more 45%
I’ve made lots of positive changes in my life 40%
I focus more on things that are important 39%
(Hodgkinson et al, 2007)
“Lost in Transition”
The US Institute of Medicine (IOM) report (2005)
Landmark report Argument that the post treatment phase is a distinct phase that requires increased attention by clinicians • Psychosocial and support needs of many survivors/their caregivers and families are currently not met • Poor coordination of care + oncology care providers commonly underestimate distress in patients
Essential elements of survivorship care delivery (2012)
- Survivorship care plans, psychosocial care plan & treatment summary
- Screening for new cancers & surveillance for recurrence
- Care coordination strategy (between primary care and oncology physicians)
- Health promotion education
- Symptom management (and palliative care)
Survivorship care plans (SCPs)
SCPs are formal, written documents that provide details of a person’s:
-cancer diagnosis and treatment
-potential late / long-term effects arising from the cancer and its treatment
plans for medical follow up
- recommended management of current medical, psychosocial and practical issues and strategies to remain well
-Specifies healthy behaviours important to survivors recovery
- Identifies relevant resources and a plan for management to address potential complications
SCPs = key component of optimal survivorship care, tailored to the person’s situation and needs, with health rather than illness focus
= ideally to be discussed toward the end of potentially-curative treatment(s)
Psychosocial care during survivorship
• Normalising and validating the experience:
experiencing psychological distress after treatment is common
• Psychosocial care should be tailored to the needs of the survivor and their family. This may include:
• providing information about Cancer Council Helpline (13 11 20), support groups, advice about online support and information
• referral to a trained health professional (e.g. a psychologist)
• referral to a gynaecologist, urologist or sex therapist for sexual concerns
• advice to seek professional legal help if discrimination appears to have occurred or be occurring in relation to employment or insurance.
Oncologist vs. PCP/GP perspectives on
models of cancer survivorship care
AIM: determine how physician attitudes & self-efficacy with cancer care predict preferences for survivorship care models.
Oncologists (n=1088) & Primary Care Physicians (n=938) surveyed 36 (Cheung et al. 2013, Journal of Cancer Survivorship)
51% PCPs endorsed PCP/shared care model vs. 59% oncologists endorsed oncologist-based care model
87% oncologists did NOT feel PCPs adequately trained/ supported to assume primary role during cancer FU
PCPs (50-74%) felt better able than oncologists to deliver aspects of survivorship care BUT 32% endorsed primary role
PCPs already involved in cancer management (43%) were more likely to prefer a PCP/shared survivorship care
