Late Effects and the Impact on a young persons Future

Ruth Elson

Increased Survival

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 RadiotherapyCan affect both physical and

psychosocial health

Plan Background to Adolescent / young

adult clinic Planning the clinic Setting up the clinic Funding Entry to clinic Guidelines After cure

Planning

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

Role

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

One stop shop All specialities available Psychology support Teenage/ young adult environment

Entry to Clinic

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

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

1. SIGN 76. Long term follow-up of survivors of childhood cancer, January 2004.

Each survivor of childhood cancer should have access to an appropriate designated key worker to co-ordinate care

1

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

1. UKCCSG Late Effects Group. Therapy-based long-term follow-up, 2nd edition, April 2005.

Summarise treatment received under the

headings:

- Chemotherapy

- Radiotherapy

- Surgery

Work through ‘Treatment/potential late adverse effects’ lists and select

appropriate follow-up protocol1

NICE: Improving outcomes in children and young people with cancer1

Late effects clinicianMultidisciplinary team (MDT)

1. NICE guidance on cancer services: Improving outcomes in children and young people with cancer, August 2005.

Key worker

Risk of late effects discussed with the patient and parents/carers

Clear lines of communication

1

Surveillance of survivors

Care plans

After Cure

After Cure – Booklet

After Cure – Factsheets

After Cure – Treatment card

The Race For Life  When times are hardTry to rememberThings always seemWorse than they are. Once upon a timeI used to believeLife would be quite simpleNow I know different. There will always beA person to judgeA starting lineSomeone to beatA hurdle to crossA way to runA race to winAn event to finish This race I call life. Bryony Carr 1996  

One Young Person

1996 aged 17 years Bryony was diagnosed with a Medulloblastoma

Craniotomy, complete Macroscopic removal

Radiotherapy

Radiotherapy

Head 36 Gys in 20 fractions Spine 36 Gys in 20 fractions Head phase 2 18 Gys in 10

fractions

Recovery

Ataxia 6th nerve Palsy Posterior fossa syndrome Weakness on right side Relearn to speak, walk and write Delayed a year at school

Recovery continued

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

Multi focal relapse, cerebral hemispheres and spine

MMT98 Protocol Ifosphamide, HD

Cyclophosphamide, Etoposide and Carboplatin

Autologous Stem cell transplant

Recovery

Went back to University Part time Lots of support Scribe for exams etc Gained Honours degree in

Biomedical sciences

Bryony today aged 30yrs

Pan Hypopituitism Epilepsy 2005 Ovarian failure and infertility Psychosexual difficulties Back pain Unemployed

Some of Bryony’s thoughts

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

Many Friends Fought for independence Increase confidence Loss of Driving Licence Mobility City Life

Biggest impact

Change in expectation of future ‘By 30yrs I expected to be married

with 2 children and to have a career as a Scientist’

continued

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 diggingDigging into the ground for a piece of hope

Someone who needs to express feelingsAnd show to the worldWhat they want to say

rather than what has been said beforeA person full of life

Needing the help and care fro all who listenFeelings shared with others

A face smiling in its happinessArms and legs staying strong

And the feet standing sturdy in joy

Bryony Carr (2008)