Current Issues in Prostate Cancer

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Current Issues in Prostate Cancer

• Suzy Mercer Head, Scotland Operations
• Tam Hewitt Peter Robinson, Volunteers
• The Prostate Cancer Charity Scotland

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Todays presentation

• Context about prostate cancer
• Mens experiences Peter and Tams perspective
• Responding to experience - current issues and
  challenges

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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.

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About the prostate

• Part of the male reproductive system
• Its a sex gland makes one of the fluids in
  semen
• 3 main conditions BPH (enlargement), prostatitis
  (inflammation or infection) or prostate cancer

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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

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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
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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

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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
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Experience

• Peter Robinson
• Tam Hewitt

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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?

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Current issues in prostate cancer

• Access to support information services
• Access to treatment care
• Awareness
• Screening for prostate cancer

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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

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TPCC Support Info Services

• If youre working in mens health you might find
  it useful to signpost to some fo the following
  services

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Helpline

• Unique service - staffed by support and
  information specialist nurses
• Helpline - Freephone 0800 074 8383 or email
  helpline_at_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)

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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

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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.

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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.

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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

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Awareness of prostate cancer

• Raising awareness of prostate cancer is
  controversial
• Its 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 mens uptake of health messages
• gender clichés stereotypes

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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.

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Awareness of prostate cancer

• If youre working in mens 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

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Detecting prostate cancer

• Diagnosing prostate cancer isnt 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

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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

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Understanding the PSA Test

• Disadvantages
• Its unreliable men still get false positives
  and false negatives (2/3 raised PSAs not cancer
  20 clinically significant PCas will have normal
  PSA)
• It cant differentiate between fast growing and
  slow growing prostate cancers
• Taken alone, its 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

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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

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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

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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.

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Screening what is the Charitys 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

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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
  Charitys position statement
• Speak to our Helpline nurses or Policy
  Campaigns team

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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.or
  g.uk
• The Helpline is 0800 074 8383
• If youre interested in campaigning you can sign
  up on the web site to Prostate Cancer Voices and
  receive our newsletter

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Thank you

• Questions?