1. I’m not just a child. I’m a daughter. I’m a son. I’m also a friend, a parent, a wife, a husband…

2. Cancer in Young People is Rare North of England Cancer Network Average 100 young people diagnosed with cancer per year* 25 cases 16 – 18 yrs old 75 cases 19 – 24yrs old 1% increase per year *NYCRIS data 5yr period 2001- 2005 & NECN 2007 data But…

3. Top 5 Causes of Death* in 15-19 yr olds % of all deaths Road traffic accidents35.6 Neoplasms 10.8 Other accidents 8.0 Nervous system & sense organs 6.7 Suicide 6.2 *ICD-9 categories in England and Wales 1976-2000

4. Common Teenage Cancers Soft tissue sarcomas Skin cancer Lymphoma Bone cancers Testicular cancer Brain tumours Leukaemia

5. Percentage Distribution of Cancer Cases by Age Group (yrs) Age Group (rank) 15 - 1920 - 24 Lymphoma 27.3 (1)24.0 (1) Leukaemia 15.1 (2) 7.7 (5) Carcinoma 11.3 (3)21.1 (2) Malignant Brain Tumours 0.8 (4) 7.7 (5) Bone Tumours 9.7 (5) 3.4 (8) Germ Cell Neoplasms9.6 (6)16.9 (3) Soft Tissue Sarcoma 6.3 (7) 4.7 (7) Malignant Melanoma 5.9 (8)10.1 (4) Miscellaneous and Unspecified4 4.4

6. Overall 5-year Survival by Time Period (13-24 year olds) % surviving in time period 79-84 85-8990-95 96-01 Leukaemia 32 43 47 53 Lymphoma 76 81 82 86 CNS Tumours 66 71 74 73 Bone Tumours 39 54 51 51 Soft Tissue Sarcomas 53 54 55 57 Germ Cell Tumours 79 85 91 94 Melanoma 74 86 86 90 Carcinoma 74 86 86 90 All Cancers 64 72 74 77

7. Survival Outcomes (Challenges) Improvement in all but bone and soft tissue sarcomas Females fared better than males – (except germ cell tumours 91% v 87% p = 0.1) For all cancers (except ALL, CNS, STS)* 13-16 year olds worse off than younger or older Improvements have lagged behind advances in childhood cancer

8. Reasons for Poorer Survival Delay in diagnosis? Is delay due to patient or professional? Is treatment appropriate? For this specific tumour and its biological features Are young patients allowed to make treatment decisions? What is clinical entry rate? Who decides treatment?

9. Who Should Treat Young People and Where? Paediatricians and adult physicians Paediatric nurses and adult trained nurses Tail end of embryonal tumours, the rise of carcinomas Pressing emotional and physical needs

10. Other Challenges Physical appearance and self esteem are critical Fertility and sexuality Loss of peer support/friendships Disruption of crucial phase of education/career Loss of independence, normality

11. What is important to a teenager with cancer? Maintaining newly established independence Getting better! Support from their friends Having a voice, a choice - and some control! Maintaining their education The support of their family Having a future

14. Improving Outcomes Guidance in Young People with Cancer* All patients aged 16 – 18 years inclusive must be referred to a Principal Treatment Centre & Young People for Treatment All patients aged 19 – 24 years inclusive must be offered referral to a Principal Treatment Centre (Young People) for treatment All patients 19 – 24 years inclusive must be discussed at both a site-specific MDT meeting and a TYA MDT meeting NICE Improving Outcomes in Children & Young People with Cancer August 2005

15. By 2010/11 Teenage Young Adult (TYA) MDT TYA Principal Treatment Centre TYA Supportive and Palliative care Increased Access to Clinical Trials Peer Support TYA Workforce

16. Challenges for Allied Health Professionals? Variety of different professional groups at different stages in the patient pathways Appropriate referral at right time Active role played by patient and their families/carers Survivors of CNS malignancy

17. Thank You Suzanne Thompson Young People Cancer Services, North of England Cancer Network Suzanne.Thompson@sotw.nhs.uk 0191 4971536