Distress in gynae-oncology patients

Relevance Common 1 Easier to intervene early Simple interventions can be very effective 2 Communication skills core 2 May impact on treatment and complications (and on outcome in terms of QoL, not survival) 3

The five d’s of cancer Death Disability Disfigurement Decline Dysfunction What everyone thinks of when they hear the word cancer

Gynaecological cancers Fertility issues Sexuality effected directly and indirectly Diagnosis often delayed Treatment invasive Stigma 1

Gynaecological cancers Ovarian Late diagnosis common Vague symptoms 1 Family risk 2 Chronic 3 Cervical Multiple adversity 4 Young women Impact on sexual function 5 stigma

Phases of the journey Initial diagnosis/awaiting results Awaiting treatment Treatment Post treatment/survivorship Recurrence Advanced disease Palliative care/dying

Initial diagnosis/awaiting results Breaking bad news (staging) 1 Uncertainty/dread/anticipation of grim process and outcome (cancer = slow death) On-going symptoms (pain) Shock/disbelief 2 What to disclose to others (children) 3 Medical juggernaut 4 Financial and other practical concerns 5

Awaiting treatment ‘Busy’ activity – displacement/denial/effort to establish sense of control 1 Decision making – information 2 Nobody is ‘doing anything’ 3 Disclosing to others – dealing with comments 4 Adapting to diagnosis of cancer when not ‘that ill’

Treatment General 1 Anxiety Trust Information Choices Access/cost 2 Impact on role 3 Impact on others 3 The patient role 4 Surgery Pain Disfigurement Impact on sexual function Stoma Ward vs. home 3

Treatment Chemotherapy Nausea Hair loss 1 Fatigue 2 Complications 3 Time demands Travel demands 5 Radiotherapy Invasive Embarrassing Fatigue 2 Bowel problems Skin problems 4 Time demands Travel demands 5

Post treatment: 1 Residual symptoms 1 Residual side effects (fatigue) Body image 2 Sexuality changes 2 Meaning of physical experience changes 1 Menopause Expectations of ‘recovery’ (including the expectations of others) 3

Post treatment: 2 1 Existential issues – self/future altered – life plans “stolen” Impact of loss of fertility/other functional losses Grief at multiple losses Anxiety around reviews/scans/tumor marker levels 2 Concerns about family risk (esp. daughters) 3 How is information about risk/recurrence presented/understood 4

Recurrence “Bad news” consultation More treatment vs. no treatment 1 Dealing with others 2 Implications 3 Symptom management Existential issues (“why me”) 4

Advanced disease Hope of cure 1 Ongoing burden of care 2 Uncertainty – living from test to test ‘tied’ to the health care system 3 Alternative/complementary therapies 1 New treatments (chemo) but not offer of cure 1 Legal/financial issues 4

Palliative care/dying Deteriorating function – multiple losses one after another Loss of role (effort of refashioning) 1 Dependence on others (burden) 2 Family/carer stress and ways of coping 3 Legal/financial issues 4

Management issues Sleep Nausea Pain Body image Sexuality Menopause Anxiety incl. specific phobias (needle) Depression

Useful skills Eliciting concerns Eliciting symptoms (mood) Problem solving Relaxation Sleep management “support” Prescribing

Adjustment (Disorder) Patterns of coping usually life-long They are a reflection of ‘personality’ Main differential diagnosis – mood disorders (depression/anxiety disorders) Grief/loss are often themes

Coping – ways of doing it Helpful Humour Family/friend networks Focus on specific problem(s) & solution(s) Exercise Distraction (pleasurable activity) Spiritual practices Goal setting (realistic) Unhelpful Alcohol/drugs Avoidance Blame (self/others) Focus on emotions Too much/too little dependence Global definitions of problems Inflexibility Struggle for control

Mood symptoms Anxiety Agitation Return to same issues/questions Seek reassurance Seek control Initial insomnia (worry) Focus on negative Poor retention of new information Depression Loss of pleasure Waking in the early hours of the morning Loss of motivation Preoccupation with death Feeling a burden on others Non- compliance/futility

Help! Referring on Local/generic Website 1 NSW Cancer Council Support groups Local D&A and mental health services Community health (social workers) Relationship counselling Pastoral care Specialist services Sexual health clinics Menopause clinics Women’s health centers/clinics Social work services through hospital gynae-onc centers Sex therapy Clinical psychology Psychiatry

REMEMBER! All of this has an impact on the staff providing care This means you