L26 Cancer survivorship Flashcards
• In the past, predominant focus of follow-up and surveillance was on detection of
cancer recurrence => a recent shift from the QUANTITY to QUALITY of SURVIVAL
Cancer SURVIVORSHIP: varying definitions
From diagnosis
• After completing primary treatment
• Disease-free for a certain number of years
• Alive 5+ years after diagnosis (long-term survivorship) Stages of survivorship (Mullan, 1985)
1. Acute survival ( < 1 year post diagnosis/treatment)
2. Extended survival (1-3 years post-treatment)
3. Permanent survival (3+ years)
Survivorship =distinct phase of
the cancer trajectory (Lotfi-Jam, Schofield & Jefford, 2009)
CaSS: Cancer Survival State
• Experience of each cancer survivor is unique, however distinct trends and common themes have been observed
• Prof Miles Little and colleagues (VELIM)
• used narratives (qualitative research) to capture the nature of the subjective experience of illness
• developed a framework to facilitate understanding of survival:
Cancer Survival State (CaSS) – aka Liminality
=> ‘in-between’ state - not what you were before the cancer - not yet ‘graduated’ into a new steady state’
1. CANCER PATIENTNESS
2. COMMUNICATIVE ALIENATION
3. BOUNDEDNESS
- ‘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, medication, media
- the body becomes a ‘house of suspicion’ (when you have a cough or a headache, you are wondering if the cancer is coming back)
- ‘chemobrain’ => conflicting evidence
• Some people are overwhelmed or threatened
• Others embrace their new identity of being a cancer survivor
- ‘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)
• Existential tension: survivors become ‘compulsory philosophers’
• Distancing and isolation, experienced partly as alienation, partly as a change in needs
• Strain on relationships (psychologically, physically, logistically difficult to go through treatment. The partner might stay for treatment but they often do leave afterwards.
- ‘Boundedness’
= a persistent and heightened awareness of:
- uncertainty of future time
- constraints on social/working roles
- limitations in the freedom to use space (side effects of radiotherapy include diarohea so some have to be on the lookout for toilets etc.)
• some perceive that their restricted lives made them part of a community of disadvantaged people
=> Identity disruption
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:
- Discontinuity of memory (change plans about the future, patient might become infertile or menaupasual, men might have changes in sexual life, fatigue etc)
- Discontinuity of embodiment (how you perceive your body as healthy vs unwell has changed)
- Existential disruption (your life has changed in so many ways you have to reconstruct who you are again and what you want to achieve)
- Disruption of the memory of others (how you perceive others changes)
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
e.g. some change their career paths because they view life differently after cancer.
SURVIVORSHIP: Quantitative research
Cancer survivors report LATE EFFECTS and FINANCIAL BURDEN across a wide range of areas
At least 50% of cancer survivors experience some late effects of treatment, with the most commonly reported problems = depression, pain, & fatigue.
• Cancer survivors are more likely to be unemployed than healthy controls
48% survivors (median 7.3yrs post-diagnosis) report financial hardship
Financial toxicity in clinical care today: a “menu without prices”
Survivorship: UNMET NEEDS
- Most cancer survivors are able to overcome these issues in time, but some continue to have unmet needs:
- 30% at least 5 unmet needs (Armes et al, 2009)
- 54% at least 1 unmet need (Hodgkinson et al, 2007)
- 38% at least 1 “significant” unmet need (Soothill et al, 2001)
- The greatest unmet needs in these studies are psychosocial, rather than physical, aspects of cancer survivorship. Mental health main issue.
- EXISTENTIAL ISSUES most highly endorsed: “… help with concerns about the cancer coming back”
Fear of Cancer Recurrence (FCR)
• Some degree of FCR reported by ALL cancer survivors:
Some FCR: 73%
Moderate FCR: 49%
High FCR: 7%
• 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 outcomes
A large US national health survey (Costanzo et al., 2009)
• Investigated psychosocial outcomes of 398 cancer survivors (~10 years post-diagnosis) compared with 796 socio-demographically matched controls
- Longitudinal analyses (pre vs. post diagnosis): 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 (older people cope better than younger people, more access to support people, more able to communicate experience to others)
Areas of IMPAIRMENT
Mental health (anxiety & depression) • Mood • Psychological wellbeing (except personal growth)
Areas of RESILIENCE
Social wellbeing
• Spirituality
• Personal growth
