26 - Cancer Survivorship

Question 1

What are the statistics of cancer in Australia?

Answer 1

• ~ 128,000 new cases of cancer will be diagnosed this year
• 1 in 2 men and 1 in 3 women will be diagnosed with cancer by the age of 85
• cancer accounted for about 3 in 10 deaths in Australia
• Between 1982-1987 and 2006—2010, 5-year survival increased from 46% to 66%

Question 2

What are the varying definitions of when survivorship starts?

Answer 2

• From diagnosis
• After completing primary treatment
• Disease-free for a certain number of years
• Alive 5+ years after diagnosis (long-term survivorship)

A distinct phase of cancer trajectory

Question 3

What are the three stages of survivorship?

Answer 3

1. Acute survival (1-year post-diagnosis/treatment)
2. Extended survival (1-3 years post-treatment)
3. Permanent survival (3+ years)

Question 4

Compared to the general population, what are some negatives cancer survivors face?

Answer 4

• Have poorer overall health
• Are more likely to die from non-cancer causes (e.g. heart disease, lung and digestive disorders, musculoskeletal problems)
• Have psychological problems (psychopathology among a small subset of survivors; subclinical psychological problems more common)

30% clinical levels of anxiety
20% clinical levels of depression

Question 5

What is the Cancer Survival State (CaSS)?

Answer 5

Liminality – CaSS: 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

Question 6

How did Miles Little discover Cancer Survival State?

Answer 6

Used narratives (qualitative research) to capture the nature of the subjective experience of illness.
Developed a framework to facilitate understanding of survivorship - CaSS

“in-between” state

• Not what you were before the cancer
• Not yet “graduated” into a new steady state

Question 7

What are the three main components of CaSS?

Answer 7

1. Cancer patientness
2. Communicative Alienation
3. Boundedness

Question 8

Describe the cancer patientness component of CaSS

Answer 8

• 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 has changed irreversibly
• Regular reminders via check-ups, side effects, medication, media
• The body becomes a “house of suspicion”
• “chemobrain”

Some people are overwhelmed or threatened, others embrace their new identity of being a cancer survivor

Question 9

Describe the communicative alienation component of CaSS

Answer 9

A state of variable alienation brought about by an inability to communicate the nature of the experience of the illness, it’s 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

Question 10

Describe the boundedness component of CaSS

Answer 10

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 a part of a community of disadvantaged people

Question 11

What is personal identity?

Answer 11

the sense of being this person, in this body, with this storey

Question 12

How is extreme experiences of cancer which produces discontinuity in the sense of identity expressed as?

Answer 12

• Discontinuity of memory
• Discontinuity of
• Existential disruption
• Disruption of the memory of others

Question 13

How do cancer survivors recover their identity?

Answer 13

• Recovering earlier (pre-diagnosis) identity may not be possible
• Change in identity can be hard for others to understand
• Finding a NEW NORMAL: reconstructing loss as change without denying the loss (This may take several tries and that’s normal)
• Most survivors will adjust in their own time and in their own way

Question 14

What kind of domains do cancer survivors report issues in?

Answer 14

• 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
• Financial; e.g. medical costs, difficulty recommencing employment, issues with health insurance
• Existential; e.g. re-evaluating changed values, goals, outlook on life

Question 15

What kind of prevalence do cancer survivors face with unmet issues?

Answer 15

Most cancer survivors are able to overcome these issues in time, but some continue to have unmet needs:

• 30% have at least 5 unmet needs
• 54% at least 1 unmet need
• 38% at least 1 “significant” unmet need

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 their cancer coming back”

Question 16

How many people deal with fear of cancer recurrence?

Answer 16

Some degree of FCR reported by ALL cancer survivors

• Some 73%
• Moderate 49%
• High 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

Question 17

What did the large longitudinal study which examined mental health issues as the only direct impairment from cancer find about how to prevent these issues?

Answer 17

Age identified as important resilience factor
- Older people seemed to be more resilient

Ares of impairment

• Mental health (anxiety and depression)
• Mood
• Psychosocial wellbeing (except personal growth)

Areas of resilience

• Social wellbeing
• Spirituality
• Personal growth

Question 18

What did the US Insitute of Medicine Report state about cancer survivorship?

Answer 18

• Landmark report
• Post-treatment phase recognised as a distinct phase requiring increased clinical attention
• Psychosocial and support needs of many survivors/their caregivers and families NOT addressed
• Poor coordination of care and patient distress underestimated by oncology clinicians

Question 19

What are the essential elements of survivorship care delivery?

Answer 19

• Survivorship care plans, psychosocial care plan and treatment summary
• Screening for new cancers and surveillance for recurrence
• Care coordination strategy (between primary care and oncology physicians)
• Health promotion education
• Symptom management (and palliative care)

Question 20

What is the proposed clinical pathway for post-treatment psychosocial care?

Answer 20

End of treatment evaluation -> survivorship care plan -> evidence-supported interventions

Question 21

What does psychosocial care during survivorship involve?

Answer 21

• Normalising and validating the experience
• Tailoring care to the needs of the survivor and their family
• Survivorship Care Plans: to address poorly coordinated follow-up care

Question 22

Describe Survivorship Care Plans

Answer 22

• A key component of optimal survivorship care, tailored to the person’s situation and needs, with health rather than illness focus
• Ideally discussed/provided towards the end of potentially curative treatment

Involves 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/psychosocial/practical issues
• Advice and coaching regarding health lifestyle
• Discussion of potential future issues and a plan for management