Who Am I? Doctor Paediatrician Medicines Research Breast cancer veteran Author of a prize-winning cancer book Medical correspondent for Frost Magazine

How Breast Cancer was for me? Delayed seeing GP Went to hospital alone Assumed I was going to die /I’d be left with no breast / I wasn’t entitled to the best cosmetic surgery Delayed telling people/Minimised seriousness Made operation choice on toss of coin Yomped up hill within 24 hrs of my operation Almost allowed radiotherapy to the wrong area

What Will I Talk About? Dealing with your diagnosis Getting the best care

Dealing With Cancer Shock Facing your own mortality always try to take someone with you Facing your own mortality

5 Stages of Grief (E. Kübler-Ross 1969) Facing Our Mortality 5 Stages of Grief (E. Kübler-Ross 1969) Denial/Isolation Anger Bargaining Depression Acceptance

Getting The Best Care Knowledge and Understanding Self-worth in a medical environment When things go wrong … Clinical trials – are they for you?

What are the implications for you Treatment Decisions Understand options Anti-cancer effect Side-effects Cosmetic What are the implications for you

Knowledge is Power Hospital Visits Research your illness Keep asking until you understand Take notes Take a friend Research your illness Where to find information Can you trust the information? Statistics –know what numbers mean

Useful Information Sources Respected websites eg Breast Cancer Care Cancer Research UK Macmillan NICE guidelines American Cancer Society European Medicines Agency Beware websites with authentic-sounding names Research journals PubMed See http://faitobooks.co.uk/links for further information

Internet/Newspapers Claims Is study in people – or just animals or test-tubes? Is the study well-designed Placebo group? Comparator drug? Enough patients? And were all patients included? Is it reported in a respected scientific journal Beware impressive-sounding names Check with your doctor if not sure

A Little Statistics Treatment benefit may be described in relation to original risk Actual benefit for you may appear much higher, or lower, than it really is

Relative Risk Reduction Example: Mrs X has BC Surgery & 4 weeks radiotherapy 10% recurrence rate Plus radiotherapy boost 9% recurrence rate Addition of boost Recurrence 10% 9% Recurrence risk reduced by 1% 1 is 10% of 10 = Relative Risk Reduction = 10% FIGURES ARE JUST EXAMPLES FOR ILLUSTRATION

Because You’re Worth It ; How you treat yourself sets the standard for how others will treat you – Steve Maraboli

Getting through hospital stays Voice needs politely but assertively Your needs are as important as others’ Don’t put on ‘brave face’ Caring professions ‘programmed’ to help needy Complain if needed Ward sister Nurse-in-charge Consultant

What could possibly go wrong? Best treatment not available or unacceptable wait Complain Personally In writing to: Consultant /Breast Care Nurse PALS Hospital CEO Request referral elsewhere Do your own research Find best treatment Find best centre GP may resist (cost) Risk of delay

What could possibly go wrong? Trainees People need to learn However Properly supervised True patient consent You are entitled to change your mind Assertive, pleasant, firm Source: Fickr http://bit.ly/1ryPA8o

What could possibly go wrong? Treatment Error Voice concerns Provide evidence Speak to consultant Put concerns in writing Consultant CEO PALs Second opinion

‘Considerations for taking part in a clinical trial (1) What are the objectives of the study, and are they what you need? Observe effect on tumour size – may give some benefit in serious progressive cancer Increase survival – may make a real difference in Stage IV cancer Achieve same effect as another medicine, but with less side-effects –may improve quality of life

‘Considerations for taking part in a clinical trial (2) How much is known about the new medicine? How does it compare with available medicines Known side-effects? Chance of being given placebo or comparator drug? What options if treatment not working? Eg Rescue therapy How long is the treatment for? What options at end of treatment? Compassionate use? Trial extension? What assessments/visits required?

‘From Both Ends of the Stethoscope – getting through breast cancer by a doctor who knows’ Available today special price £8 Free handout: ‘Is This the Best Treatment for me Doctor? Statistics on a Postage Stamp’ Frost Magazine Further information: www.faitobooks.co.uk