1. Making A Difference
Janet Day

2. CNS Tumours
Primary CNS tumours are uncommon.
They account for only 1.6% of cancers in England and Wales.
Affect people of all ages.
Both anatomical position and pathology play an important role in prognosis and treatment decisions.

3. CNS Tumours
“In view of the poor survival of many patients, even with optimal treatment, an important aspect of improving outcome is through maximising quality of life”
(Improving Outcomes Guidance, 2006).

4. The Issues
Life-threatening
Life-changing
“CNS tumours cause the greatest loss of life of any of the adult tumours, (average 20 per patient)”
(Nice Guidelines, 2006).

5. Common Problems
Short presentation
Diagnosis and prognosis
Living with disabilities
Finances
Lifestyle changes
Relationships
Coping
Driving
Side effects of treatments & drugs

6. Altered Body Image
Surgery
Hair
Language
Seizures
Mobility problems
Impaired continence
Sexuality

7. The Role of the Neuro-Oncology Nurse Specialist
Cross care group/division: Neurosciences and Oncology
Point of contact for patients and families from diagnosis
Support, advice and information in person & by telephone.
Liaison between hospital, community and region.
Education and support for healthcare professionals
Counselling for patient and families

8. Referral Criteria
All patients with high grade primary tumours of the central nervous system (approximately 250 per year).
Must be under the care of Regional Neurosurgical or Oncology teams.
Excludes ‘benign’ CNS tumours, paediatrics and cerebral metastases.

9. Multi-disciplinary Team
Physiotherapy
Occupational therapy
Speech and language therapy
Social services
Community nursing
Palliative care
Voluntary organisations

10. Losses
“Also peculiar to the disease is the fact that with each deterioration the patient loses so much, both in the physical and in the cognitive or psychological sense” (Davies, 1997).

11. Case Study: ‘The meaning of loss’
18 year old male, acute presentation, diagnosis high grade glioma.
Eldest of six siblings. No contact with father. Living with mother.
Working full time, partner recently pregnant.
Surgery & radiotherapy.
Weight gain with steroids
Visual loss

12. ‘Loss’
Loss of vision
Loss of earnings
Loss of leisure pursuits
Loss of personal independence
Loss of father role
Loss of ‘status’ amongst friends/society
Loss of ‘identity’
Loss of ‘future’

13. Case Study ‘Timing’
50 year old male, ‘separated’ , four children
Collapsed night before interview
Previous redundancy
Massive debts
Homeless in two weeks
Diagnosis glioblastoma

14. Case Study ‘Timing’
Support for family (practical & emotional)
Benefits advice
Liasing with creditors
Liasing with housing on behalf of family
Strong personality/lack of insight/advice re medication

15. Case Study ‘More steroids’
Female, 52 years, married
Surgery outside WNC diagnosis glioblastoma
Moved into area completed RT
Post RT scan stable disease

16. The Problems
Chest infections (steroids increased)
Urine infections (steroids increased)
Seizures (steroids increased)
Reduced mobility (steroids increased)
The Result: numerous steroid related side-effects

17. The Issues
Anxious family/problems coping = numerous hospital admissions
Proximal myopathy
Steroid-induced Diabetes
Recurrent Infection
Thrush
Weight gain ++
Skin changes

18. The Outcome
Management of Diabetes/other side-effects of steroids
Management of seizures
Surgery for management of cyst
Gradual reduction of steroids

19. Steroids
Dexamethasone is vital to the management of brain tumours
Requirement at presentation/surgery/radiotherapy/at recurrence
Variable dose

20. Side Effects
Hyperglycaemia
Steroid psychosis
Immuno-suppression
Confuse evaluation for infection (antipyretic property)
Prevent/delay wound healing
Proximal myopathy
GI bleeding
Appetite stimulant
Insomnia
Fluid retention

21. Management of steroids
Lowest dose to control symptoms
Reduction in dose if no improvement after trial period
Regular review of steroid dose
Monitor for side effects
Patient education

22. Case Study: Have you met…?
42 year old female with learning difficulties transferred for neurosurgical procedure
Diagnosis made and decision for no further treatment
Discussions with patient, family and healthcare professionals regarding future care needs
Plan transfer to hospice
Facilitate visit by children

23. Case Study: Have you met…?
Family (estranged father & siblings)
Ex-husband
3 children
Foster parents
Paediatric & adult social worker
Community occupational therapist
Advocacy services

24. Case Study: Have you met…?
Information, communication, support and liaison for :-
The Patient
The Family
The Children
The Foster parents
The Healthcare professionals

25. “If you can find a path with no obstacles- it probably doesn’t lead anywhere”.
(Frank A Clark, 1930)