Download Cancer in Young People is Rare North of England Cancer Network

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 old
75 cases 19 – 24yrs old
• 1% increase per year
But…
*NYCRIS data 5yr period 2001- 2005 & NECN 2007 data
Top 5 Causes of Death* in 15-19 yr olds
% of all deaths
Road traffic accidents
Neoplasms
Other accidents
Nervous system & sense organs
Suicide
*ICD-9 categories in England and Wales 1976-2000
35.6
10.8
8.0
6.7
6.2
Common Teenage Cancers
Bone cancers
Skin cancer
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
Lymphoma
CNS Tumours
Bone Tumours
Soft Tissue Sarcomas
Germ Cell Tumours
Melanoma
Carcinoma
All Cancers
32
76
66
39
53
79
74
74
64
43
81
71
54
54
85
86
86
72
47
82
74
51
55
91
86
86
74
53
86
73
51
57
94
90
90
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 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
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?
Getting better!
The support of their
family
Maintaining
their education
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 Thompson
Young People Cancer Services, North of
England Cancer Network
[email protected]
0191 4971536