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…

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 old75 cases 19 – 24yrs old

• 1% increase per year

*NYCRIS data 5yr period 2001- 2005 & NECN 2007 data

But…

Top 5 Causes of Death* in 15-19 yr olds

% of all deathsRoad traffic accidents 35.6Neoplasms 10.8Other accidents 8.0Nervous system & sense organs 6.7Suicide 6.2

*ICD-9 categories in England and Wales 1976-2000

Common Teenage Cancers

Soft tissue sarcomas

Skin cancer

Lymphoma

Bone cancers

Testicular cancer

Brain tumours

Leukaemia

Percentage Distribution of Cancer Cases by Age Group (yrs)

  Age Group (rank)

  15 - 19 20 - 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 Neoplasms 9.6 (6) 16.9 (3)

Soft Tissue Sarcoma 6.3 (7) 4.7 (7)

Malignant Melanoma 5.9 (8) 10.1 (4)

Miscellaneous and Unspecified 4 4.4

Overall 5-year Survival by Time Period(13-24 year olds)

% surviving in time period

79-84 85-89 90-95 96-01

Leukaemia 32 43 47 53Lymphoma 76 81 82 86CNS Tumours 66 71 74 73Bone Tumours 39 54 51 51Soft Tissue Sarcomas 53 54 55 57 Germ Cell Tumours 79 85 91 94Melanoma 74 86 86 90Carcinoma 74 86 86 90All Cancers 64 72 74 77

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

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?

Who Should Treat Young Peopleand 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

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

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 theirfamily

Having a future

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

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

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

Thank You

Suzanne ThompsonYoung People Cancer Services, North of England Cancer Network

Suzanne.Thompson@sotw.nhs.uk0191 4971536