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

2. 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

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

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

5. 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

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

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

8. 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

9. 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 for further information

10. 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

11. 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

12. 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

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

14. 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

15. 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

16. 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

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

18. ‘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

19. ‘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?

20. ‘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: