Current Issues in Prostate Cancer

1. Current Issues in Prostate Cancer Suzy Mercer Head, Scotland Operations Tam Hewitt & Peter Robinson, Volunteers The Prostate Cancer Charity Scotland

2. Today’s presentation • Context – about prostate cancer • Men’s experiences – Peter and Tam’s perspective • Responding to experience - current issues and challenges

3. Why does prostate cancer matter? • Most common cancer in men in the UK • History of neglect and underfunding • 215,000 men in the UK living with prostate cancer • 2,500 men diagnosed in Scotland every year • Now as common as lung cancer in men in Scotland • Incidence projected to continue to rise as more men access the PSA test and the population ages • The Prostate Cancer Charity funds research, deliver support and information services, campaigns and raises awareness.

4. About the prostate • Part of the male reproductive system • It’s a sex gland – makes one of the fluids in semen • 3 main conditions: BPH (enlargement), prostatitis (inflammation or infection) or prostate cancer

5. Signs and Symptoms • Prostate cancer may cause similar symptoms to non-cancerous prostate problems • A weak or reduced urine flow • Needing to urinate more often, especially at night • A feeling that the bladder has not emptied properly • Difficulty starting to pass urine • Dribbling urine • Needing to rush to the toilet • There are also some less common symptoms • Some men with prostate cancer may have no symptoms at all

6. Diagnosis – range of tests Urine test Checks for infection PSA – Prostate Specific Antigen blood test Measures a protein produced by the prostate gland DRE – Digital Rectal Examination Checks for signs of abnormality such as lumps or hardness TRUS biopsy – Trans Rectal Ultra Sound Taking samples of prostate tissue to look for cancer cells

7. Preventing prostate cancer • Not much is known about how to prevent prostate cancer • Diet is the current main focus • More is known about who is at risk

8. Risk factors Age Over 85% of prostate cancer cases are diagnosed in men over 60 Ethnicity African Caribbean men are 3 times more likely to develop prostate cancer than white men Family Men are 2.5 times more likely to develop prostate cancer if their father or brother has been diagnosed Diet A diet rich in fat, dairy products and red meat may increase the risk of developing prostate cancer

9. Experience Peter Robinson Tam Hewitt

10. My experience of prostate cancer • Awareness of prostate cancer before diagnosis • Experience of clinical services • Experience of non clinical services • Accessing support and information • How did prostate cancer affect me?

11. Current issues in prostate cancer • Access to support & information services • Access to treatment & care • Awareness • Screening for prostate cancer

12. Meeting information & support needs • Access to appropriate and timely high quality information and support plays a vital role • Men with prostate cancer face a bewildering array of treatment choices and the experience of making a treatment choice is stressful • In addition information and support needs change over time as the disease progresses or men live with it as chronic condition • Re-assessment of information and support needs on a regular basis is important • The Charity aims to support men and their partners to make informed decisions based on impartial information and support

13. TPCC Support & Info Services • If you’re working in men’s health you might find it useful to signpost to some fo the following services:

14. Helpline Unique service - staffed by support and information specialist nurses Helpline - Freephone 0800 074 8383 or email helpline@prostate-cancer.org.uk Answers on average 8,000 calls per year Vast majority of callers are men with a diagnosis or men concerned about prostate cancer, followed by family members and healthcare professionals Most common reasons for calling: PSA testing, treatment options, signs and symptoms, advanced disease Holds information on treatments and services available locally (e.g. support groups)

15. Peer Support Online: Message boards on our web site which facilitate direct contact between people 900 new users in 2008-9 www.prostate-cancer.org.uk/forums By phone: One to one telephone based peer support for anyone affected by prostate cancer, linked to Helpline Service is provided by people who have all been personally affected who are offered training and support from the Charity

16. Website & Publications • Web site contains the latest information on everything we do • Has section dedicated to health professionals • We have an award winning range of free publications, including the Toolkit. • These can be downloaded or leaflets ordered online or via the Helpline.

17. Access to treatment and care • As Peter highlighted, some NHS support services are not routinely available to men with prostate cancer • The Charity is currently gathering information but it looks like psychological support services and access to sexual dysfunction support and/or couple counselling are emerging as issues • There are also some treatments for prostate cancer not available in Scotland • The Charity is planning some work looking at access to support services and treatments to try and highlight lack of, or inconsistencies in,provision of certain services and treatments.

18. Awareness of prostate cancer • The Prostate Cancer Charity raises awareness both of prostate cancer and of the Charity • Lack of awareness in public – starting to move, but still a massive challenge

19. Awareness of prostate cancer • Raising awareness of prostate cancer is controversial • It’s a complex disease • range of possible symptoms or no symptoms at all • no test to distinguish slow growing & aggressive forms of disease • diagnosis carries the risk of over treatment • Difficult to find appropriate messaging: • no clear prevention message • issues around men’s uptake of health messages • gender clichés & stereotypes

20. Awareness of prostate cancer Positives: • Early diagnosis can mean increased range of treatment options and better outcomes • Raising awareness can play a key role for high risk groups given lack of screening • Raising awareness of the scale and impact of prostate cancer with government and other key influencers can have impact on resources available for research, treatment and care.

21. Awareness of prostate cancer • If you’re working in men’s health you may want to use our resources: • ‘Waterworks Poster’ – signs and symptoms ‘Questions about Prostate Cancer?’ – Helpline poster • ‘Know Your Prostate’ Prostate Cancer Awareness Month in March

22. Detecting prostate cancer • Diagnosing prostate cancer isn’t always straightforward. • The primary issue is the use of the PSA test What does a PSA test tell us? • High level can indicate a prostate problem • Currently the best method of identifying the possible presence of cancer - but taken alone it cannot diagnose prostate cancer

23. Understanding the PSA Test Advantages • Can detect significant cancers early • A normal result might be reassuring • Repeat tests may reveal a problem • Useful for high risk groups • Can help to diagnose other prostate disease • After diagnosis, is a useful tracking tool

24. Understanding the PSA Test Disadvantages • It’s unreliable – men still get false positives and false negatives (2/3 raised PSAs not cancer; 20% clinically significant PCas will have normal PSA) • It can’t differentiate between fast growing and slow growing prostate cancers • Taken alone, it’s not a test for cancer • Further invasive diagnostic tests carry risks and side effects • Implications of diagnosis: treatments cause side effects which impact quality of life

25. Screening for prostate cancer • The historical lack of conclusive scientific evidence that a screening programme for prostate cancer, using the PSA test, would save lives …but a recent study gave new evidence

26. Screening – current debate • Publication of the ERSPC study reignited debate (20% reduction in mortality) • Despite ERSPC study it is not yet clear that a national screening programme would lead to more benefit than harm. Why? • In the ERSPC study 1410 men needed to be screened and an additional 48 cases of PCa treated to prevent one death • ERSPC study highlights the complex balance between benefits and harms, which in turn demonstrates the vital importance of informed decision making

27. Screening – situation in UK • UK National Screening Committee commissioned independent review and will make final decision October 2010 • In the meantime an updated resource pack reinforcing informed choice around PSA testing is going out to all GPs (in Scotland, this month) • The Charity will be looking at how this gets implemented – our most recent survey showed that 82% of GPs had not heard of the pack in its original form.

28. Screening – what is the Charity’s position? • Currently, the Charity strongly supports universal access for all men over 50 years - and men at a higher risk of the disease - to balanced information about the PSA test • Currently not all eligible men are aware of their right to a PSA test –this needs to changeto ensure ‘universal access to informed choice’ • After receiving balanced information about the test, menshould not face opposition from their GPif they decide to go ahead and have the test. • We want to move debate on from screening or no screening. If there turns out to be no screening programme, we need to ensure that men still get better information about the PSA test so they can make their decision

29. PSA Testing Resources • For more information about PSA testing or screening, you might find the following TPCC resources of use: • PSA & Beyond • How Prostate Cancer is Diagnosed (Toolkit factsheet) • ‘Screening & the PSA Test’ The Prostate Cancer Charity’s position statement • Speak to our Helpline nurses or Policy & Campaigns team

30. Resources • We can support you in your practice • All of the resources mentioned in this presentation are available free • Publications, posters or policy positions can be downloaded, ordered online or via the Helpline • Our website can be found at www.prostate-cancer.org.uk • The Helpline is 0800 074 8383 • If you’re interested in campaigning you can sign up on the web site to Prostate Cancer Voices and receive our newsletter

31. Thank you Questions?