1. Dr Hilary Williams SpR in Medical Oncology

2.  Impact life threatening illness  Loss testicle, fertility, sexual function  Chemotherapy  Hospital  Economic/Educational impact

3.  What are the key survivorship issues in testicular cancer? ◦ Early problems, ◦ Chemotherapy toxicities, ◦ Late effects  How do we address these issues while providing appropriate life-stage support?

4.  ~ 15% of 19-24 TYA group have testicular cancer  Incidence in Europe rising by 10-20% every 5 years  100 - 120 new patients a year at Bristol Haematology and Oncology centre  All cases from ASWCS network (population 2.1 million) seen and treated in Bristol  Supraregional service for Southwest - MDT discussion and retroperitoneal surgery (specialist urology surgery) ◦ Links with Cheltenham, Exeter, and Plymouth

5. We cure > 95% of men with testicular cancer Testicular mass and orchidectomy Staging CT scan Metastatic disease BEP combination chemotherapy – curative intent Early stage disease Short course adjuvant chemotherapy Retroperitoneal surgery Active surveillance Active NCRI clinical trials programme leading to tailored attenuated chemotherapy schedules and surveillance programmes e.g. TE111- 1 cycle adjuvant BEP vs. 2 cycles in stage 1 NSGCT Palliation

6.  Body image and sexuality ◦ Orchidectomy primary treatment of testicular cancer  “All I want for Christmas is a pair of swinging balls”  Men surveyed, about prosthesis, about 1/3 accepted implant, about 1/3 not offered, about 1/3 with a prosthesis dissatisfied: vast majority felt it was extremely important to be offered an implant. Rustin et 2004 ◦ Hairloss: universal with BEP chemotherapy  Have men been overlooked? A comparison of young men and women's experiences of chemotherapy-induced alopecia. Hilton 2007  “You lose all your arm hair, you lose your pubic hair and then your body hair and your leg hair and your toe hair, everything is completely gone,” said one respondent. Another likened himself to a “plucked chicken”.

7. Research needed  Hospital ◦ Frequent clinic attendance & how to individualise needs ◦ Terrified, isolated and bored in adult inpatient units : “deep distress”, Grinyer 2006  Education, employment and financial impact  Relationship with family – loss of independence  Mortality and adjustment crisis “Young men prefer to suffer in silence” – Institute of cancer research 2001

8.  Standard chemotherapy - BEP (bleomycin, cisplatin and etopside) ~ At 2 years following treatment around 20% men experience toxicity e.g. peripheral neuropathy and raynaud’s phenomenon, tinnitus and hearing loss (Fossa 2004) ◦ Genetic polymorphisms linked to cisplatin and bleomycin toxicities have recently been identified ◦ Future ‘tailored treatments’, identification of risk factors and useful interventions  Intensified chemotherapy for relapsed/poor prognosis disease, including high dose chemotherapy & autograft ◦ Minimal data on toxicity ◦ Toxicity higher with cumulative dose

9. Secondary cancers ◦ 4 cancer registry studies published 2005-2007 ◦ Increased risk of solid tumours, including colon, bladder, pancreas, stomach, lung (e.g. standardized incidence ratio of 2.0 or higher) ◦ Increased risk of leukaemia ◦ Younger patients at higher risk e.g. the earlier the treatment the higher the risk ◦ High risk group - infra-diaphragmatic radiotherapy and chemotherapy, develop cancers in treatment field  Excess cardiovascular disease - ? exact risk ◦ Mechanism - chemotherapy related endothelial damage and metabolic effects of low testosterone ◦ May be mediated by increased risk of metabolic syndrome ◦ High risk group: those who have received over 850mg cisplatin

10.  Sperm storage ◦ Advised pre chemotherapy  “This is not the way it is supposed to happen, conceiving a child is supposed to be wreathed in hope, not this sad, solitary, desperate procedure- This was one of the most distressing and utterly cheerless experiences of my life ” Lance Armstrong 2000  Paternity following treatment ◦ Post treatment paternity rates ~ 70%, but 48% in high dose chemotherapy group (Brydoy 2005) ◦ 22% use of assisted conception ◦ Subfertilty or infertility may be present at diagnosis of testicular cancer- aetiology unknown

11. Quality of life and sexual function  Quality of life ◦ ‘Most’ men describe their quality of life as similar to age matched peers by 2 years following treatment ◦ But survivors do have more sexual problems, and increased risk of anxiety disorder (young patients at higher risk) ◦ Appropriate tools e.g. mobility score or ability to dress  Gonadal and sexual function ◦ Low testosterone levels in 10-16%, associated decreased quality of life: research needed ◦ Common clinical problem, little accurate prospective data, retrospective questionnaire data conflicting

12.  Staff education ◦ Help staff understand the very individual, changing and sometimes unpredictable needs of this patient group  Assess our service & benchmark others ◦ Are we offering both practical and age specific support around some of the ‘difficult’ issues (e.g. sperm storage, reduced fertility and sexual function)  Rational assessment of late effects ◦ Record and address late effects ◦ Identify who is at most risk (e.g. young age diagnosis and intensive chemotherapy) and how to intervene (e.g. smoking)

13.  Opportunity to ◦ Identify life-stage psychosocial issues and provide appropriate support during and after treatment ◦ Engage with Survivorship strategies ◦ Focused research on reducing treatment toxicity and identifying needs & acting on results