The challenges for young men with Testicular

CancerDr Hilary Williams

SpR in Medical Oncology

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

World of young adult

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?

How can we enable healthy Survivorship?

~ 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

Bristol Supraregional germ cell service

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

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”. 

Early problems – unmet and unknown (1)

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

Early problems – unmet and unknown (2)

“Young men prefer to suffer in silence” – Institute of cancer research 2001

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

What do we need to tell men about chemotherapy related toxicity?

• 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

Late effects – emerging data (1)

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

Late effects – emerging data (2)

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

Late effects – emerging data (3)

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)

The way forward: lets work with our patients

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

Teenage young adult cancer service- spring board to change