Late Effects and the Impact on a young persons Future

1. Late Effects and the Impact on a young persons Future Ruth Elson

2. Increased Survival Increased recognition of late effects

3. Healthcare Provision Healthcare provision needs to address Late Effects as a growing concern by recognising the need for specialist input.

4. Late Effects Due to: The Cancer itself • Surgery • Chemotherapy • Radiotherapy Can affect both physical and psychosocial health

5. Plan • Background to Adolescent / young adult clinic • Planning the clinic • Setting up the clinic • Funding • Entry to clinic • Guidelines • After cure

6. Professor of Paed Oncology SW regional Survey My Experiences What did we think we needed What did our regional centres need Planning

7. 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 Funding

8. 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.

9. Ideal Clinic • One stop shop • All specialities available • Psychology support • Teenage/ young adult environment

10. 16 years or over 5 years from diagnosis 3 years from end of treatment Referal from consultant Summary of treatment Entry to Clinic

11. SIGN 76: long-term follow-up of survivors of childhood cancer1 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 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 1 1. SIGN 76. Long term follow-up of survivors of childhood cancer, January 2004.

12. CCLG: Therapy-based long-term follow-up practice statement1 Protocols designed for use in the out-patient setting Guidance for surveillance of survivors at least 3 years off therapy Summarise treatment received under the headings: - Chemotherapy - Radiotherapy - Surgery Work through ‘Treatment/potential late adverse effects’ lists and select appropriate follow-up protocol 1 1. UKCCSG Late Effects Group. Therapy-based long-term follow-up, 2nd edition, April 2005.

13. 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 1 1. NICE guidance on cancer services: Improving outcomes in children and young people with cancer, August 2005.

14. After Cure

15. After Cure – Booklet

16. After Cure – Factsheets

17. After Cure – Treatment card

18. 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

19. One Young Person • 1996 aged 17 years Bryony was diagnosed with a Medulloblastoma • Craniotomy, complete Macroscopic removal • Radiotherapy

20. Radiotherapy • Head 36 Gys in 20 fractions • Spine 36 Gys in 20 fractions • Head phase 2 18 Gys in 10 fractions

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

22. 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

23. Relapse • Multi focal relapse, cerebral hemispheres and spine • MMT98 Protocol • Ifosphamide, HD Cyclophosphamide, Etoposide and Carboplatin • Autologous Stem cell transplant

24. Recovery • Went back to University • Part time • Lots of support • Scribe for exams etc • Gained Honours degree in Biomedical sciences

25. Bryony today aged 30yrs • Pan Hypopituitism • Epilepsy 2005 • Ovarian failure and infertility • Psychosexual difficulties • Back pain • Unemployed

26. 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

27. continued • Many Friends • Fought for independence • Increase confidence • Loss of Driving Licence • Mobility • City Life

28. 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’

29. continued • Engagement broke because of loss of libido and Infertility • Volunteers for CRUK and the Wallace and Gromit appeal

30. Someone InvisibleAn image in your mind of a person diggingDigging into the ground for a piece of hopeSomeone who needs to express feelingsAnd show to the worldWhat they want to sayrather than what has been said beforeA person full of lifeNeeding the help and care fro all who listenFeelings shared with othersA face smiling in its happinessArms and legs staying strongAnd the feet standing sturdy in joy Bryony Carr (2008)