Transcript Late Effects and the Impact on a young persons Future

Late Effects and the Impact on
a young persons Future
Ruth Elson
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Increased Survival
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Increased recognition of late effects
Healthcare Provision
Healthcare provision needs to address
Late Effects as a growing concern by
recognising the need for specialist
input.
Late Effects
Due to: The Cancer itself
 Surgery
 Chemotherapy
 Radiotherapy
Can affect both physical and psychosocial
health
Plan
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Background to Adolescent / young adult
clinic
Planning the clinic
Setting up the clinic
Funding
Entry to clinic
Guidelines
After cure
Planning
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Professor of Paed Oncology SW regional
Survey
My Experiences
What did we think we needed
What did our regional centres need
Funding
We had to be creative
 Looked at patient Numbers
 Consultant’s Clinics
 Moving patients
 Appointment of new consultant gave the
opportunity to designate a lead role in late
effects
Discussion with our colleagues
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Role
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To educate young adults about their
disease, any late effects that they may
experience and to empower them to
make informed decisions about their
future healthcare.
Ideal Clinic
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One stop shop
All specialities available
Psychology support
Teenage/ young adult environment
Entry to Clinic
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16 years or over
5 years from diagnosis
3 years from end of treatment
Referal from consultant
Summary of treatment
SIGN 76: long-term follow-up of
survivors of childhood cancer1
All survivors of
childhood cancer should
be actively followed up
for life
Each survivor of
childhood cancer
should have access
to an appropriate
designated key
worker to co-ordinate
care
At the end of a
course of cancer
treatment, patients,
their parents/carers
and GPs should be
given a summary of
the treatment and a
list of signs of late
effects to look out for
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1. SIGN 76. Long term follow-up of survivors of childhood cancer, January 2004.
CCLG: Therapy-based long-term
follow-up practice statement1
Guidance for surveillance
of survivors at least 3
years off therapy
Protocols designed for use in
the out-patient setting
Summarise treatment
received under the
headings:
- Chemotherapy
- Radiotherapy
- Surgery
Work through ‘Treatment/potential
late adverse effects’ lists and select
appropriate follow-up protocol
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1. UKCCSG Late Effects Group. Therapy-based long-term follow-up, 2nd edition, April 2005.
NICE: Improving outcomes in children
and young people with cancer1
Late effects clinician
Multidisciplinary team (MDT)
Risk of late effects
discussed with the
patient and
parents/carers
Surveillance of survivors
Clear lines of communication
Care plans
Key worker
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1. NICE guidance on cancer services: Improving outcomes in children and young people with cancer, August 2005.
After Cure
After Cure – Booklet
After Cure – Factsheets
After Cure – Treatment card
The Race For Life
When times are hard
Try to remember
Things always seem
Worse than they are.
Once upon a time
I used to believe
Life would be quite simple
Now I know different.
There will always be
A person to judge
A starting line
Someone to beat
A hurdle to cross
A way to run
A race to win
An event to finish
This race I call life.
Bryony Carr 1996
One Young Person
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1996 aged 17 years Bryony was
diagnosed with a Medulloblastoma
Craniotomy, complete Macroscopic
removal
Radiotherapy
Radiotherapy
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Head 36 Gys in 20 fractions
Spine 36 Gys in 20 fractions
Head phase 2 18 Gys in 10 fractions
Recovery
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Ataxia
6th nerve Palsy
Posterior fossa syndrome
Weakness on right side
Relearn to speak, walk and write
Delayed a year at school
Recovery continued
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Took A levels gained a place at
University to study Biomedical Sciences
During her first year Bryony relapsed
Multi focal relapse, cerebral
hemispheres and spine
Relapse
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Multi focal relapse, cerebral
hemispheres and spine
MMT98 Protocol
Ifosphamide, HD Cyclophosphamide,
Etoposide and Carboplatin
Autologous Stem cell transplant
Recovery
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Went back to University
Part time
Lots of support
Scribe for exams etc
Gained Honours degree in Biomedical
sciences
Bryony today aged 30yrs
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Pan Hypopituitism
Epilepsy 2005
Ovarian failure and infertility
Psychosexual difficulties
Back pain
Unemployed
Some of Bryony’s thoughts
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Frustrated at some clinics, no time,
repeat history
Poor short term Memory
30yrs but doesn’t look it,
Father advocate what will she do when
she is 50yrs
continued
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Many Friends
Fought for independence
Increase confidence
Loss of Driving Licence
Mobility
City Life
Biggest impact
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Change in expectation of future
‘By 30yrs I expected to be married with
2 children and to have a career as a
Scientist’
continued
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Engagement broke because of loss of
libido and Infertility
Volunteers for CRUK and the Wallace
and Gromit appeal
Someone Invisible
An image in your mind of a person digging
Digging into the ground for a piece of hope
Someone who needs to express feelings
And show to the world
What they want to say
rather than what has been said before
A person full of life
Needing the help and care fro all who listen
Feelings shared with others
A face smiling in its happiness
Arms and legs staying strong
And the feet standing sturdy in joy
Bryony Carr (2008)