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Current Issues in
Prostate Cancer
Suzy Mercer Head, Scotland Operations
Tam Hewitt & Peter Robinson, Volunteers
The Prostate Cancer Charity Scotland
Today’s presentation
• Context – about prostate cancer
• Men’s experiences – Peter and Tam’s
perspective
• Responding to experience - current issues and
challenges
Why does prostate cancer matter?
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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.
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
Signs and Symptoms
Prostate cancer may cause similar symptoms to noncancerous 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
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
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
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
Experience
Peter Robinson
Tam Hewitt
My experience of prostate cancer
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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?
Current issues in prostate cancer
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Access to support & information services
Access to treatment & care
Awareness
Screening for prostate cancer
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
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:
Helpline
•Unique service - staffed by support and information
specialist nurses
•Helpline - Freephone 0800 074 8383 or email
[email protected]
•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)
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
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.
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.
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
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
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.
Awareness of prostate cancer
• If you’re working in men’s health you may want to use
our resources:
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‘Waterworks Poster’ – signs and symptoms
‘Questions about Prostate Cancer?’ – Helpline poster
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‘Know Your Prostate’
Prostate Cancer Awareness Month in March
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
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
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
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
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
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.
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 change to ensure ‘universal access to
informed choice’
• After receiving balanced information about the test, men
should not face opposition from their GP if 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
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
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
Thank you
•Questions?