1. Teenagers & Young Adults with Cancer
Laura Elder
Teenage and Young Adult Lead Nurse

2. Outcomes for the Session
Overview of young peoples cancers
Specific needs of young people with cancer
The impact of cancer on a TYA
The local service of Merseyside and Cheshire
Survival and late effects
Further learning

3. Facts & Figures TYA Cancers
2405 new cases in
50/50
male:female ratio
equally diagnosed
173,000 estimated cases diagnosed in 2008 worldwide.
Incidence rates vary across world
28% increase in TYA cancer incidence since early 90’s 7
a day
14,700
cases diagnosed
in Europe in 2008
<1% of all cancers

4. Cancer Diagnostic Groups
Average Number of New Cases Per Year and Age-Specific Incidence Rates per 100,000 Population, UK
All Cancers Excluding Non-Melanoma Skin Cancer (C00-97 Excl. C44):

5. TYA Cancers Average New Cases per Year by Diagnostic Group
Teenage and Young Adult Cancers by Diagnostic Group:
Average Number of New Cases per Year and Proportion of All Teenage and Young Adult Cancers*, Ages 15-24, UK
Lymphomas form the most commonly diagnosed group of cancers in TYAs overall, accounting for 21% of the total cancers in this age group.
The numbers of cases are slightly higher in males than in females.
There are two main types of lymphoma: Hodgkin lymphoma, which accounts for around two-thirds, and non-Hodgkin lymphoma
Carcinomas (such as of the thyroid, cervix, bowel and ovary) form the second most commonly diagnosed group of cancers
However, the numbers of cases are considerably higher in females
This is due to the much higher incidence of carcinoma of the thyroid in females compared with males, and the higher incidence of the female-specific carcinomas (cervix, ovary and breast).
A different diagnostic group chart than would be seen in either adults or children

6. Diagnostic Groups Children 0-14yrs 1756 cases/year TYA 15-24yrs
Leukaemia
Brain & CNS tumours
Lymphomas
TYA 15-24yrs
2405 cases/year
Lymphoma
Carcinomas
Germ cell tumours
Adults
cases/year
Male
Female
Prostate 26%
Breast 31%
Lung 14%
Lung 12%
Bowel 13%
Bowel 10%
All others 48%
All others 46%

7. Why do young people need a specialist service?
TYAs have unique needs that are not met within the traditional model of paediatric and adult healthcare. Although survival is improving it is not happening in line with paediatric or adult age groups. Suggested reasons for this include: rare tumours, inequalities in access, tumour biology, poor recruitment to clinical trials and delays in diagnosis.
Cancer is the most common disease-related cause of death in teenagers and young adults (TYA) this is exceeded only by accidents. The needs of cancer patients in this age group are different to those of both paediatric and adult patients not only in terms of disease-specific treatment, but also in the context of physical, social and educational development.
Interest in addressing TYA cancer needs has increased considerably since the 2005 publication of the guidance "Improving outcomes in children and young adults with cancer" and TYA services are often developed around a centralised service at a Principal Treatment Centre.

8. NICE Improving Outcomes in Children & Young People with Cancer 10 Key Recommendations
1. Care should be co-ordinated across the whole of the NHS and be available as close to the patients home as possible
2. Cancer networks should ensure that
they meet the needs of children and
young people with cancer
3. Multidisciplinary teams should
provide cancer care
4. Each child or young person with
cancer should have a key worker
5. Care should be appropriate to the
child’s or young person’s age and
type of cancer
6. Time in the operating theatre and a
children’s anaesthetist should be
available when needed
8. Treatment should be based on
agreed protocols
7. Children and young people with
cancer should be offered the chance
to take part in research trials
9. A register of all cancers in people
aged 15–24 should be urgently
considered
10. Cancer networks should ensure
there are sufficient specialist staff
In 2005 NICE published the improving outcomes guidance for children and young people
Key recommendations include…….
Implementation of the NICE IOG resulted in the establishment of 13 TYA PTCs in England for the management of care of all year olds
Within Merseyside and Cheshire that PTC is at Clatterbridge Cancer Centre and the Royal. In the Manchester area it is Christies.

9. What do Young People Want from Cancer Services?
Evidence based treatment with access to clinical trials
Psychological, social, educational, and employment support
A high standard of age specific facilities
Peer support
Teenage Cancer Trust asked young people what was most important to them when they are diagnosed with cancer.
These are young people responses;
Access to staff that understand them and their needs
Clear and accurate information
Rapid access to cancer services offering accurate diagnosis and a competent assessment
The best treatment as close to home as possible
The best chance of survival with the least possible physical cost

10. Causes of TYA Cancer Delayed exposure to common childhood infections
Exposure to ultraviolet radiation
Growth and hormonal factors during puberty
Genetic syndromes
Lifestyle factors and environmental factors have less impact on cause than they do on older adult cancers
Exposure to infections such as epstein barr may be linked to hodgkins lymphoma
Exposure to uv radiation increases risk of melanoma
Osteosarcoma is associated with rapid bone growth during adolescence
Some genetic syndromes are linked to certain cancers such as neurofibromatosis type 1, li-fraumeni syndrome, down syndrome
Previous cancer treatment increases the risk of a second cancer eg radiation some chemotherapy drugs
HPV infection nearly always precedes development of cervical cancer
Previous cancer treatment
Human Papillomavirus

11. Diagnosis of TYA Cancers
Challenges to Early Diagnosis
Routes to Diagnosis
Via the ‘two-week wait’ around a fifth in England (19%)
Following a routine or urgent GP referral almost a quarter (23%) in England (not 2WW)
Diagnosed after presenting as an emergency around a quarter (24%)
Route of diagnosis varies considerably by cancer type
Self-awareness, TYA’s undereducated in their own health
Delays as some TYAs reluctant to visit GP
Parental surveillance reduces as children grow
Low profile of TYA cancers in primary and secondary care

12. The Average Teenage Brain
Adolescence
A rapid development phase which includes changes in physical, cognitive, physiological and social behaviour
The Average Teenage Brain
Difficult to define an age range it starts when it starts (puberty) and finishes when it finishes!
A vulnerable life stage
Developing independence and autonomy
Executive decision making skills are not yet fully informed
Developing their own self identity
Critical stage in educational and vocational plans
Developing sexuality and intimacy
Intense relationships (with peers)

13. The Impact of Cancer on a Young Person
Education; choices, GCSEs, A-levels, University
Employment; full time, part time, apprenticeships
Relationships; family, friends, boyfriends, girlfriends, partners, own children
Lifestyle; alcohol, smoking, drugs, parties, festivals
Body image; identity, sexuality, personality
Home; with parents, away at University, independent, home owner, renting
Often have a lot of things going on at this age to get cancer for anybody at any age is not nice but the coping and acceptance mechanisms at this age can be difficult
Big decisions to be made education, employment, relationships, lifestyles, body image, your home living
To suddenly be going through a cancer experience and hospital trips and treatment is just not part of the plan

14. TYA Services across Merseyside & Cheshire
All patients years with a cancer diagnosis must be referred to network TYA MDT hosted by Clatterbridge Cancer Centre
Aged years with a diagnosis of cancer?
Age treatment should be in a principal treatment centre
(Alder Hey, CCC, RLBUHT)
Age treatment should be in a principal treatment centre or designated hospital

15. Weekly Specialist TYA MDT What are the key discussions and outcomes?
NICE IOGCYP-All young people aged years with a cancer diagnosis must be referred to a TYA MDT
Choices
Fertility
Clinical Trials
Agreeing a treatment plan
Key worker
Psychosocial
Support

16. TYA Clinical Nurse Specialist
Psychosocial Support
The role of the lead nurse is to ensure that young people have access to the appropriate services for their need. Her role is central to the coordination of TYA care in the region. She will also work clinically and act as a key worker for some patients.
TYA Lead Nurse
TYA Clinical Nurse Specialist
TYA Psychologist
Youth Support Coordinator
Social Workers
The role of the clinical nurse specialist is to ensure that young people have easy access to a person who knows and understands the individual patient pathway. She acts as a key worker for all TYA patients treated at CCC and liaises with many clinical teams.
The TYA clinical psychologist offers specific advice and support for patients who have difficulty dealing with the various emotions and reactions that come with a cancer diagnosis. She provides coping strategies, relaxation techniques, hypnotherapy sessions and more.
The youth support coordinator will support young people socially and psychologically, offering opportunities to meet other young people sharing similar experiences at peer group events and within the ward environment.
The social workers provide support for patients and loved ones, offering advice on financial matters, benefits, education, work and family support issues.

17. Age Appropriate Environments

18. Supporting Young People Through Cancer Treatment
Key workers
Communication
Flexibility
TYA Team
Peer support
Suitable Environments

19. Lucy - Osteosarcoma – Case Study
Clinical
Lucy was sent by the University GP to the hospital for tests after having a 2 month history of pain in her leg.
Medical history appendicitis and hay fever
Investigations showed high grade osteosarcoma 10cm in distal femur
Baseline staging local disease only. No distant mets.
Psychosocial
When diagnosed Lucy was in the first year of a history degree in Bristol University.
Mum and dad are separated, not on good terms and she has a 16 year old sister
She is not in a relationship herself, has no children and has a small group of friends at University
Hobbies include tennis, badminton, racquetball
Lucy 19 years has recently been diagnosed with a Osteosarcoma in her left leg.
She is due to start a long course of cancer treatment involving chemotherapy and surgery.
In order to bring a situation to life a bit more talk through a case study of Lucy.
Lucy is 19yrs old recently diagnosed with osteosarcoma in her left leg
Brief clinical history
Brief psychosocial history
She is due to start a long course of cancer treatment

20. Osteosarcoma
Neo adjuvant treatment in Lucy's case aim is to cure disease
PAM x 2 cycles
Surgery (approximately week 10)
Pam x 2 cycles
Doxorubicin and methotrexate x 2 cycles
P=Cisplatin
A= Doxorubicin M= Methotrexate
Lucy is to receive a chemotherapy regime called PAM involving 3 drugs
Tough regime requires inpatient stay and people are often admitted further with side effects of treatment
Nausea and vomiting (high risk), mylosupression, febrile neutropenia, mucositis, loss of appetite, taste changes, diarrhoea, constipation, infertility, fatigue
Neoadjuvant treatment aim to cure disease and involves surgery after 2 cycles then further chemo
In Lucys case this surgery was above knee amputation
This process takes around 8 months

21. Lucy-Holistic Care Lifestyle Body image Education Relationships
The future?
Lifestyle
Independence
Some of the issues that Lucy faced when we considered more than her illness and her clinical treatment
In supporting Lucy through treatment
Education- at University in Bristol social worker supported her in postponing her course for a year and helped out with issues such as her student accommodation and then getting transferred to a local university
Lifestyle- quite an active lifestyle very sporty but now had to adapt psychologically and physically won’t play the same again
Body image- Lucy had several issues, loss of a leg, hair loss due to chemo, weight loss due to sickness sore mouth, we supported with real hair wig, look good feel better session, access to TYA psychologist
Relationships- many friends had gone to universities around country and friends from new uni still there so feeling isolated, peer support opportunities with YSC
Independence- loss of independence she had moved away from home and now had to go back, family support this but Lucy was a bit nervous
The future- questions of what does the future hold fear of recurrence adapting to new way of life

22. Survival Five-Year Relative Survival Rates, Males, Ages 15-24, UK
Five-Year Relative Survival Rates, Females, Ages 15-24, UK
Survival is improving, Overall in both male and female groups the five year survival rate is over 80%
In both groups thyroid cancer survival is nearly 100%
Germ cell tumours are highly responsive to chemotherapy and have good survival rates as does hodgkins lymphoma
A comparison of five-year survival between children and year-olds diagnosed during in the UK has shown that teenagers and young adults often experience lower survival than children for many cancer type
Survival in uk lower than the average survival in Europe

23. Teenage and Young Adult Cancers by Diagnostic Group, Five-Year Relative Survival Rates, Ages 15-24, UK,
Survival from cancer in TYAs is improving,
Survival rates have increased for most diagnostic groups, with the exception of bone tumours and Soft Tissue Sarcomas (for which 5 year survival rates have not changed significantly over the time period).
The greatest increase has been for leukaemias, with the five-year survival rate in both sexes (together) increasing from 47% to 62% between and

24. TYA Cancer Survival
Surviving doesn’t always mean living well, cure sometimes comes at a cost
FU has shown 60-70% of long term survivors have at least 1 chronic medical condition
25-45% have at least 2 chronic medical conditions
25-40% have at least 1 severe, life threatening or disabling chronic condition.
Increasing burden with intensive treatment, longer FU, older age attained
Follow up is very important
Macmillan Cancer Support 2016

25. TYA Cancer Survival
Late effects encompass a range of physical and psychosocial effects. Some may be temporary, some may be permanent. Late effects depend on the treatment that has been given.
Tiredness/fatigue
Cardiovascular
Respiratory
Secondary Malignant Neoplasm
Psychological and psychosocial
Neurological/ neurocognitive
Pain
Fertility
Renal
Endocrine/ Growth

26. In Summary Young people do get cancer
The needs of TYAs are recognised as different to those of both the paediatric and adult groups
As health care professionals understanding these needs helps us to support young people through their cancer treatment
Local services are available for health and support

27. Professional Learning
E learning for health professional about children and young peoples cancer at various stages of a cancer pathway
E-learning that can be used as an app from website based on case studies through a TYA cancer pathway
Blueprint of Care- brings together the expertise and knowledge of healthcare professionals who have been leading TYA cancer care, it provides practical advice, guidance and tips for anyone working with young cancer patients aged

28. Any Questions Laura Elder
Teenage Cancer Trust Lead Nurse for Teenagers & Young Adults
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