Prostate Cancer Personal Organiser A record book for men living with any stage of prostate cancer The contents of this organiser are personal and confidential, and of value only to the owner. If found, please contact: Name
Home phone
Mobile
PO Box 1332 Lane Cove NSW 1595 Freecall 1800 22 00 99 Fax 02 9438 7099 Email enquiries@prostate.org.au www.pcfa.org.au
ABN 42 073 253 924 Š 2011 Prostate Cancer Foundation of Australia Research & original writing: Andrea Ball, On the Ball Communications Design: North Design & Branding
Thank you
Developing the Prostate Cancer Personal Organiser involved the time, skills, experience and generosity of many organisations and individuals. Our sincere thanks to: The Movember Foundation for providing generous funding to make the organiser available to men newly diagnosed with localised prostate cancer. Fosters Community Grants for their support in developing the organiser. Karen Livingstone and Ovarian Cancer Australia for permission to adapt their Resilience Diary to form the basis of this organiser. Lyn Swinburne and Breast Cancer Network Australia for the initial concept of a diary for cancer survivors.
Convenors and members of PCFA support groups across Australia who provided both practical and inspirational suggestions to ensure this organiser represents the needs of men and their families who are living with prostate cancer. Members of PCFA Awareness & Education Committee under the chairmanship of Professor Dexter Dunphy AM for their review of and valuable suggestions for the organiser’s content.
PCFA would like to recognise the Movember Foundation as a key funder of its National Research Program and national Prostate Cancer Specialist Nursing Service
“Remember the final treatment decision must be an informed one made by you and not your doctor — because it is your life and health that is being determined. There are no guarantees given for any form of treatment. But by adopting an absolutely positive outlook, a sensible lifestyle and diet, and not being afraid to share your experience with others, especially in a support group, your expectations for living well should be enhanced.” Allan Hedges, Prostate cancer survivor
Support groups PCFA has a network of more than 130 support groups across Australia. The groups meet regularly and provide a valuable forum for men and their wives or partners to talk about their situation in a relaxed environment where they will be understood with empathy and support. Support groups also provide a way to review the latest news on treatment, research and other developments in the area of prostate cancer. Finding your local support group is an important first step for many men and their families in living well with prostate cancer. Call the PCFA free information line on 1800 22 00 99 to be put in touch with a support group in your local area or visit PCFA’s web site www.pcfa.org.au and choose the ‘Support Groups’ tab.
Putting you in control YOUR PROSTATE CANCER PERSONAL ORGANISER
Being told that you have prostate cancer is the beginning of a long expedition into unfamiliar territory. After the initial shock, you have a lot to learn about this illness, treatment decisions to make, and side effects to cope with. And suddenly, there are also many details to keep track of: test results (and more test results), appointments, questions to ask your doctor, and the many new contacts and friends you will meet along the way. With the collective wisdom and experience of almost 600 men living with prostate cancer and attending PCFA support groups — as well as many of their wives and partners — we have developed a personal organiser to help you live with the practical and emotional challenges of prostate cancer at any stage of living with the disease. Your personal organiser is designed to put you in the driver’s seat so you feel in control of what is happening to your body and your life. Carry your personal organiser with you wherever you go, so you are always ready to jot down information that you need. With your permission, family members or health professionals may read parts of your organiser to better understand your experience of prostate cancer and the issues that are concerning you. You may also want to ask your health professionals to help you complete some of the information or complete certain sections for you. As well as recording test results and treatment, I encourage you to personalise your organiser. You may want to add notes about your thoughts and experiences, words of a favourite song, a photo of family members that inspire you — anything that reminds you that there is plenty to look forward to. In this way, your organiser will become much more than a practical tool: it will be your own unique record of living well with prostate cancer.
DR ANTHONY LOWE Chief Executive Officer Prostate Cancer Foundation of Australia
About PCFA Prostate Cancer Foundation of Australia (PCFA) is the peak national body for prostate cancer in Australia. We are dedicated to: • F unding research into the cause, diagnosis, prevention and treatment of prostate cancer. • R aising community awareness of prostate cancer, which encourages earlier detection and more effective treatment of the disease. • P roviding support, information and advocacy to men and their families affected by prostate cancer. PCFA receives limited government funding and relies on the generosity of the community and corporate partners to provide and expand our vital services across Australia. Your generosity will help us to continue our important work and achieve our ultimate goal — to reduce the impact of prostate cancer on Australian men, their wives, partners, families and communities.
How you can help Check out PCFA’s web site Visit www.pcfa.org.au for current fundraising events in your area or to organise your own fundraising event.
Workplace giving Allows employees to help PCFA through a regular donation direct from their pay. Contact PCFA on 1800 22 00 99 for an information kit.
Movember Participate in Movember by growing a ‘mo’ or by sponsoring a ‘Mo Bro’. Visit www.movember.com to learn more.
tax deductible donation Make a tax deductible donation — every dollar you give helps to support PCFA’s vital work. Please turn over to find out how to donate.
Ways to donate Online You can donate securely online at www.pcfa.org.au
Phone Call 1800 22 00 99 to make a donation over the phone
Mail Post your donation by completing the section below and sending it with your cheque, money order or credit card details to: Prostate Cancer Foundation of Australia PO Box 1332 LANE COVE NSW 1595 All donations over $2 are tax deductible and we will send you a receipt. I want to help find a cure for prostate cancer and wish to donate $____________ Name Position Company Address Post Code Phone Mobile Email
Payment method (please mark) Cheque/money order made out to Prostate Cancer Foundation
of Australia Credit card (please mark type) Visa
MasterCard Amex
Diners
Card number _____________/_____________/_____________/_____________/ Expiry date ______/_____ Signature________________________________
Contents
1
Personal information & medical history....................... 3
2
Health care team & support systems .................................21
3 4 5 6 7
This is where you can record all your essential personal and medical details: contact information, health cover, medical history, a list of medicines, and your family history of cancer and other illnesses.
A place to keep the contact information for each member of your health care team, your local prostate cancer support group, as well as support people and organisations.
Test results..........................................................................................31 Keep all your test results in one place for an at-a-glance guide. This section also includes PSA and biopsy record charts.
Treatment.............................................................................................41 Use these pages to keep summaries of your different treatments as well as your notes about your experience of treatment, side effects experienced and what helped you to manage these.
Appointments, questions & expenses.................................79 Keep track of your appointments and jot down questions to ask health professionals at your next appointment.
Thoughts & notes..........................................................................93 Blank pages for you to record your thoughts and feelings as you come to terms with a diagnosis of prostate cancer, make choices about treatment and celebrate life, family and friends.
Useful bits & pieces.........................................................................103 A collection of essential information and support services for men and their families living with prostate cancer.
Prostate Cancer Foundation of Australia
1
2
Prostate Cancer Foundation of Australia
1
Personal & contact information Title
First name
Last name Address
State Postcode Email Home phone
(
)
Work phone
(
)
Mobile Relationship status
Single
Divorced
Married/de facto
Widowed
Separated
Country of birth Main language spoken Religion
Name & phone number of minister, priest, rabbi, spiritual advisor or other representative of your faith
Prostate Cancer Foundation of Australia
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1
Emergency contact people 1 NAME RELATIONSHIP TO YOU Home phone
(
)
Work phone
(
)
Mobile
2 NAME RELATIONSHIP TO YOU Home phone
(
)
Work phone
(
)
Mobile
4
Prostate Cancer Foundation of Australia
1
Other personal information BLOOD TYPE o+
o– A+ a–
B+
b–
ab+ aB–
ARE YOU AN ORGAN &/or tissue DONOR? YES
NO
Please note that ticking either box is not a legal commitment. To record your legal decision to be an organ or tissue donor, you need to register with the Australian Organ Donor Register. You can do this by calling Medicare on 1800 777 203, by visiting your local Medicare office or registering online at www.medicareaustralia.gov.au and choosing ‘For individuals and families’ and then clicking on ‘Australian Organ Donor Register’. It is important that you discuss your decision to register with your family or those close to you.
Do you have an Advanced Health Directive? YES
NO
If YES, you may wish to make a note about where it is stored. A copy of your Advanced Health Directive should be given to your health care team and kept in your medical file — your medical file should also be marked to say it contains this document.
Prostate Cancer Foundation of Australia
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1
Other personal information Do you have an Enduring Power of Attorney? YES
NO
If YES, please write down who is responsible to make decisions for you and their contact details. NAME RELATIONSHIP TO YOU Home phone
(
)
Work phone
(
)
MOBILE
Do you have a current will? YES
NO
If YES, you may wish to jot down where it is stored and a contact person and phone number.
6
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1
Health cover details MEDICARE MEDICARE NUMBER EXPIRY Your reference on Medicare card (please insert 1, 2, 3 etc.)
PENSION CARDS PENSION NUMBER Department of Veteran’s Affairs (DVA) pension number
PRIVATE HEALTH INSURANCE COMPANY DATE JOINED POLICY NUMBER LEVEL OF COVER
AMBULANCE COVER COMPANY POLICY NUMBER
Prostate Cancer Foundation of Australia
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1
Hospitals attended & record numbers List each hospital you have attended and your record number if you know it: 1 HOSPITAL NAME HOSPITAL RECORD NUMBER
2 HOSPITAL NAME HOSPITAL RECORD NUMBER
3 HOSPITAL NAME HOSPITAL RECORD NUMBER
Allergy & health alerts If you wear a medic alert bracelet or have any life-threatening or major allergies (such as peanuts, bee sting or penicillin), please list them here:
8
Prostate Cancer Foundation of Australia
1
Past surgery Use this page to record information about any surgery you have had for conditions other than prostate cancer. This information may be useful for your current health care team to know about. Don’t worry if you can’t remember all the details, just include what you can remember.
TYPE OF SURGERY
APPROXIMATE DATE
SURGEON
HOSPITAL
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1
Medical history Use these pages to record information about any past and current health conditions you have other than prostate cancer, such as high blood pressure, arthritis or diabetes. It is very helpful for you and your health care team to have this history recorded in one place — as other health conditions may affect your treatment choices and medicines that can be prescribed. You can record information about any medicines you are taking for these conditions in the ‘Medicines record’ pages that follow.
10
HEALTH CONDITION
ARE YOU RECEIVING TREATMENT FOR THIS?
e.g. High blood pressure
Yes or No
Prostate Cancer Foundation of Australia
1
HEALTH CONDITION
ARE YOU RECEIVING TREATMENT FOR THIS?
Prostate Cancer Foundation of Australia
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12
Prostate Cancer Foundation of Australia
Dr P Van (rheumatologist)
e.g. Paracetamol
TAKEN FOR
Arthritis pain in knees
DOSE HOW MUCH & HOW OFTEN
2 x 500 mg tablets 3 times a day
Started Nov 2009
DATE STARTED & STOPPED
You may not always have an entry for the ‘Prescribed by’ column and won’t need to enter a ‘Date stopped’ until you are no longer taking that medicine.
Remember to list prescription medicines, over the counter medicines (such as antacids or pain relievers) as well as vitamins and herbal medicines.
include medicines for prostate cancer (such as hormone therapy), medicines to help with side effects of prostate cancer treatment, and medicines you take for any other health conditions.
If you have been prescribed hormone therapy, you will find more space in the ‘Treatment’ section of your organiser to record your medicines in more detail, including side effects that you have experienced and what has helped you.
PRESCRIBED OR RECOMMENDED BY
MEDICINE OR SUPPLEMENT NAME
List ALL medicines here, so this becomes a complete record:
Use these pages to record any medicines that you currently take regularly. Over time, you will probably cross some medicines off and add others.
Medicines record
1
PRESCRIBED OR RECOMMENDED BY
Dr P Van (rheumatologist)
MEDICINE OR SUPPLEMENT NAME
e.g. Paracetamol
TAKEN FOR
Arthritis pain in knees
DOSE HOW MUCH & HOW OFTEN
2 x 500 mg tablets 3 times a day
Started Nov 2009
DATE STARTED & STOPPED
1
Prostate Cancer Foundation of Australia
13
MEDICINE OR SUPPLEMENT NAME
PRESCRIBED OR RECOMMENDED BY
DOSE HOW MUCH & HOW OFTEN TAKEN FOR
DATE STARTED & STOPPED
1
14
Prostate Cancer Foundation of Australia
PRESCRIBED OR RECOMMENDED BY
DOSE HOW MUCH & HOW OFTEN TAKEN FOR
DATE STARTED & STOPPED
Need more pages? You can download more pages to record your medical history from www.pcfa.org.au under the ‘Resources’ tab or call PCFA on 1800 22 00 99 to have extra pages sent to you.
MEDICINE OR SUPPLEMENT NAME
1
Prostate Cancer Foundation of Australia
15
1
Family history of cancer About 5–10% of prostate cancers are thought to involve an inherited predisposition to developing the cancer. The risk of cancer developing is increased in men who have a family history of prostate cancer, particularly where a father or brother has had prostate cancer that was diagnosed before they were 60 years old. The risk of developing prostate cancer is higher where there are a greater number of affected close male blood relatives. A small proportion of prostate cancers may be associated with inheriting a faulty copy of the BRCA1 or BRCA2 genes, which are the same genes that increase the risk of breast and ovarian cancer in women. It can therefore be helpful for you and your doctor to know about your family history of prostate, breast, ovarian and possibly other cancers in any blood relatives on either your mother’s or father’s side of the family. You can use the chart on the pages that follow to keep an up-to-date record of your family history of cancer. If you are concerned about your family history of breast or ovarian cancer, ask your doctor to refer you to a family cancer clinic. If you are concerned about your family history of prostate cancer, chat to your doctor about early screening for prostate cancer in other male family members — such as your brothers, sons and nephews.
To read more about inherited predisposition to prostate cancer, visit The Centre for Genetics Education at www.genetics.com.au and download Fact Sheet 51.
16
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1
Name of relative
Mother’s Relationship or Father’s to you side?
Type of cancer
Age when diagnosed
Prostate Cancer Foundation of Australia
17
1
Name of relative
18
Mother’s Relationship or Father’s to you side?
Prostate Cancer Foundation of Australia
Type of cancer
Age when diagnosed
1
Family history of other illnesses Your doctors may also be interested in your family history of any other major illnesses such as diabetes and heart disease.
Name of relative
Relationship to you
ILLNESS
Age when diagnosed
Prostate Cancer Foundation of Australia
19
1
Notes
20
Prostate Cancer Foundation of Australia
2
Name & contact details for health care team GP Name Phone Mobile Email Address
Urologist Name Phone Mobile Email Address
Radiation oncologist Name Phone Mobile Email Address
Medical oncologist Name Phone Mobile Email Address
Prostate Cancer Foundation of Australia
21
2
Continence physiotherapist Name Phone Mobile Email Address
Social worker Name Phone Mobile Email Address
Psychologist, psychiatrist or counsellor Name Phone Mobile Email Address
Dietitian Name Phone Mobile Email Address
22
Prostate Cancer Foundation of Australia
2
Nurses: urology, oncology, radiation You may want to record information about more than one nurse. Name Type of nurse Phone Mobile Email Address
Name Type of nurse Phone Mobile Email Address
Name Type of nurse Phone Mobile Email Address
Prostate Cancer Foundation of Australia
23
2
Other health professionalS You can use these spaces to record the details of any other health professionals not yet covered. Name Type of health professional Phone Mobile Email Address
Name Type of health professional Phone Mobile Email Address
Name Type of health professional Phone Mobile Email Address
24
Prostate Cancer Foundation of Australia
2
PCFA support group details PCFA has a network of more than 100 support groups in all states and territories across Australia that meet regularly. Finding your local support group is an important first step for many men and their families in living well with prostate cancer. To find a group convenient to you: • Call PCFA’s free information line on 1800 22 00 99. • V isit PCFA’s web site www.pcfa.org.au and choose the ‘Support Groups’ tab. You can then select your state or territory, and then your town, city or area to reveal the details of the local support groups, their meetings and some background history. Once you have found your local support group, record the details on the next page so you will always have them at hand. Some support groups have several main contact people, so we have included space for you to record these.
Prostate Cancer Foundation of Australia
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2 Support group name OF GROUP Web site (if applicable)
Contact PEOPLE NAME Phone number/s Email
NAME Phone number/s Email
NAME Phone number/s Email
meeting DETAILS Usual meeting date & time (e.g. First Tuesday of the month at 7.30 pm)
Address for meetings
26
Prostate Cancer Foundation of Australia
2
Name & contact details of support people Community nurse Name Phone Mobile Email
Domiciliary care Name Phone Mobile Email
Meals on Wheels Name Phone Mobile Email
Cleaner Name Phone Mobile Email
Prostate Cancer Foundation of Australia
27
2
Accountant/financial advisor Name Phone Mobile Email Address
Lawyer Name Phone Mobile Email Address
MINISTER, PRIEST, RABBI OR SPIRITUAL ADVISOR Name Phone Mobile Email Address
28
Prostate Cancer Foundation of Australia
2 Use these spaces to record the contact details of any other support people or organisations not covered on the previous page, such as family members, your local council, your preferred taxi service and others.
ADDITIONAL Support people or organisations Name Phone Mobile Email Address
Name Phone Mobile Email Address
Name Phone Mobile Email Address
Prostate Cancer Foundation of Australia
29
2
Notes
30
Prostate Cancer Foundation of Australia
3 Summary of initial test results We have included space to record a number of initial test results. Not all tests will be needed for all men, so simply fill in the sections that apply to you. If you seek a second opinion (which is the right of every cancer patient), you can use the second summary test results page to record these second opinion results — which may or may not differ from the first results.
PSA record chart You will have your PSA (prostate specific antigen) level checked many times during the course of your diagnosis, treatment, recovery and ongoing monitoring. After the main test result pages, you will find a PSA record chart where you can keep a separate, ongoing record of your PSA.
Biopsy record chart Many men will have more than one biopsy in the course of their disease, especially if they are monitoring their prostate cancer using active surveillance. The record chart allows you to record an ongoing summary of biopsy results.
Nomograms Your doctor may also use a nomogram — a table that uses the experience of thousands of men with prostate cancer to help predict cancer behaviour and estimate the chance of the cancer recurring (coming back) after surgery or radiotherapy. Nomograms are usually internet-based programs that provide a print-out. If your doctor has printed nomograms for you, you may want to hole-punch them and add them to this part of the organiser as part of your complete record. Need more pages? If you run out of pages to record your test results, you can download more pages from www.pcfa.org.au under the ‘Resources’ tab or call PCFA on 1800 22 00 99 to have extra pages sent to you. To read more about the tests used for prostate cancer and what the results mean, see Chapter 2 of Localised prostate cancer: a guide for men and their families.
Prostate Cancer Foundation of Australia
31
3
Summary of initial test results Date Age Total PSA
Free to Total PSA ratio
Clinical stage from DRE
Biopsy Number of biopsy samples (cores) taken Number of biopsy samples affected Gleason score (cancer grade)
TNM stage
Bone scan Date of scan Where is scan stored? Results of scan
OTHER TESTS
32
Prostate Cancer Foundation of Australia
+ =
1st score 2nd score Gleason total score
3
The cancer is (please tick one) Localised Locally advanced Advanced
Treatment/s suggested
Prostate Cancer Foundation of Australia
33
3 You may wish to use this page to record second opinion results.
Date Age Total PSA
Free to Total PSA ratio
Clinical stage from DRE
Biopsy Number of biopsy samples (cores) taken Number of biopsy samples affected Gleason score (cancer grade)
TNM stage
Bone scan Date of scan Where is scan stored? Results of scan
OTHER TESTS
34
Prostate Cancer Foundation of Australia
+ =
1st score 2nd score Gleason total score
3
The cancer is (please tick one) Localised Locally advanced Advanced
Treatment/s suggested
Prostate Cancer Foundation of Australia
35
3
PSA record chart This chart allows you to keep an ongoing record of your PSA in one place so you can refer to it whenever needed.
Date
PSA
Notes
e.g. 1/3/2011
e.g. 4
e.g. First PSA after finishing radiotherapy
Many men experience ‘PSA anxiety’ when they are due for their next PSA test and while waiting for results. This can be a good time to lose yourself in an enjoyable activity (maybe a game of golf, some gardening or a good movie) or to use one of the relaxation exercises in the booklet Coping with a diagnosis of prostate cancer, which is included in the Localised Prostate Cancer Pack or order your free copy by calling 13 11 20. 36
Prostate Cancer Foundation of Australia
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Date
PSA
Notes
Prostate Cancer Foundation of Australia
37
3
Biopsy record chart If you are monitoring your prostate cancer using active surveillance, you can use this chart to keep an ongoing summary of biopsy results.
Biopsy date
38
Gleason score (cancer grade)
TNM stage (cancer stage)
Prostate Cancer Foundation of Australia
notes
3
Biopsy date
Gleason score (cancer grade)
TNM stage (cancer stage)
notes
If your doctor has printed nomograms for you, you may want to hole-punch them and add them to this part of the organiser as part of your complete record.
Prostate Cancer Foundation of Australia
39
3
Notes
40
Prostate Cancer Foundation of Australia
4
Treatment plan summary Use these pages for your own and your doctor’s notes about your agreed treatment plan.
“A diagnosis of prostate cancer raises the question of what to do with it: advance to treatment immediately, or wait to see how it develops. The decision eventually rests with the patient, but we need all the information we can get to be able to reach a suitable conclusion.” Wallace Crellin — Prostate cancer survivor
Prostate Cancer Foundation of Australia
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4
Treatment plan summary
42
Prostate Cancer Foundation of Australia
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Surgery Ask your urologist or urology nurse to help you fill in this summary of your surgery for prostate cancer. Date of surgery Hospital Name & contact details of urologist
Contact person for any concerns about surgery (Before you leave hospital, make sure you know who you can contact if you have any concerns.) During office hours Name
phone 
After hours Name
phone
Type of surgery (For example, radical prostatectomy: open, laparoscopic or robotic-assisted)
Ask your urologist or urology nurse to fill in this summary about the outcome of your surgery, your surgery pathology report and any notes and recommendations they have for you following surgery.
Outcome of surgery
Prostate Cancer Foundation of Australia
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4 PATHOLOGY REPORT SUMMARY Gleason score (cancer grade)
+ =
1st score 2nd score Gleason total score
TNM stage Surgical margins positive
YES
NO
Extra capsular extension
YES
NO
YES
NO
YES
NO
Seminal vesicle involvement Lymph node involvement
Medicines prescribed following surgery
Notes from urologist & health care team following surgery
Next appointment with urologist
44
Prostate Cancer Foundation of Australia
4
My experience of surgery Use these pages to record your experience of surgery and to make notes about symptoms and side effects that you would like to discuss with your health care team. Members of your health care team will also have suggestions about managing side effects, which you may want to write down here. You may also want to chat to members of your local support group about their experiences with surgery and what helped them to manage both the short and longer-term side effects they experienced.
Prostate Cancer Foundation of Australia
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4
My experience of surgery
46
Prostate Cancer Foundation of Australia
4
My experience of surgery
“After surgery and once recovery is well underway, modifications are often needed to bedroom etiquette. Creativity in this department can lead to a whole new and exciting relationship and even greater closeness.” Roz Baker — Partner of prostate cancer survivor Prostate Cancer Foundation of Australia
47
4
Radiotherapy: EBRT Ask your radiation oncologist or urology nurse to provide the information you need to keep this brief summary of your radiotherapy contacts and planned treatment.
Contact person for concerns about radiotherapy During office hours Name
phone 
After hours Name phone
Treatment centre
Name & contact details of radiation oncologist
48
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Type of radiotherapy Stand alone EBRT
EBRT + high dose brachytherapy
Treatment summary Date treatment began Date treatment ended Number of treatments planned Number of treatments given Radiation dose given SUPPORTIVE MEDICINES PRESCRIBED
FOLLOW-UP APPOINTMENT
Is this radiotherapy part of a clinical trial? Yes
No
Name of clinical trial Trial number
Prostate Cancer Foundation of Australia
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4
Radiotherapy: High dose brachytherapy (rods) Ask your health care team to help you fill in this summary of contact people and treatment.
Contact person for concerns during & after treatment During office hours Name
phone 
After hours Name phone
Hospital/treatment centre
Name & contact details of health professionals Urologist RADIATION ONCOLOGIST
Other heath care professional
50
Prostate Cancer Foundation of Australia
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Treatment summary & follow-up Date TREATMENT BEGAN Date treatment ended Number of implant procedures planned Number of treatments (fractions) given per implant Radiation dose given Supportive medicines prescribed
FOLLOW-UP APPOINTMENT
Is this brachytherapy part of a clinical trial? Yes
No
Name of clinical trial Trial number
Prostate Cancer Foundation of Australia
51
4
Radiotherapy: Low dose brachytherapy (seeds) Ask your health care team to help you fill in this summary of contact people and treatment.
Contact person for any concerns after seed implantation During office hours Name
phone 
After hours Name phone
Hospital/treatment centre
Name & contact details of health professionals Urologist RADIATION ONCOLOGIST
Other heath care professional
52
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Treatment summary & follow-up Date of surgery Number of seeds implanted Medicines prescribed following implantation
Follow-up appointment
Is this brachytherapy part of a clinical trial? ď Ł Yes
ď Ł No
Name of clinical trial Trial number
Prostate Cancer Foundation of Australia
53
4
Cryotherapy & High frequency ultrasound (HIFU) These newer treatments are occasionally used for prostate cancer. If you are having either of these treatments, ask your health care team to help you fill in this summary of contacts and your planned treatment.
Contact person for any concerns after treatment During office hours Name
phone 
After hours Name phone
Hospital/treatment centre
Name & contact details of health professionals Urologist Other heath care professional
54
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4
Treatment summary & follow-up Type of treatment
Cryotherapy
HIFU
Date of treatment Medicines prescribed following TREATMENT
Follow-up appointment
Is this treatment part of a clinical trial? Yes
No
Name of clinical trial Trial number
Prostate Cancer Foundation of Australia
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4
My experience of radiotherapy Use the pages that follow to keep a record of your experience with radiotherapy — the side effects you experienced, what helped you to manage side effects and any aspect of your treatment that you would like to discuss with your health care team. Members of your health care team will also have suggestions about managing side effects, which you may want to write down here. You may also want to chat to members of your local support group about their experiences with radiotherapy and what helped them to manage both the short and longer-term side effects of treatment.
If you have had treatment with cryotherapy or HIFU, you can also use these pages to record your experience.
56
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4
My experience of radiotherapy
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4
My experience of radiotherapy
“It is quite conceivable that some cancer cells are somewhere there in my pelvic region just biding their time. Though from what I have read I should be worrying more about being injured in a car accident for now.” Greg Wallace — Prostate cancer survivor
Need more pages? You may need more pages to record your experience of radiotherapy, especially if you are having EBRT. You can download more pages from www.pcfa.org.au under the ‘Resources’ tab or call PCFA on 1800 22 00 99 to have extra pages sent to you. 58
Prostate Cancer Foundation of Australia
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Hormone therapy Hormone therapy may be used at many different stages of treatment for prostate cancer. It may be used to help shrink the tumour before radiotherapy and may also be used after radiotherapy or surgery, or as therapy by itself for advanced prostate cancer. You may have ongoing treatment, or intermittent (pulsing) treatment. Depending on when and how you are having hormone therapy, you may need to record different information. Ask your health care team to help you complete this treatment summary.
Contact person for any concerns during treatment During office hours Name
phone 
After hours Name
phone
Doctor who prescribed hormone therapy Name 
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4 Treatment summary Name of hormone therapy Dose & frequency of dose
length of treatment/ongoing or pulsing
Date started
Date finished
Is this treatment part of a clinical trial? ď Ł Yes
ď Ł No
Name of clinical trial Trial number
Bone density Calcium & vitamin D supplements (recommended type, strength & dose)
BONE DENSITY SCANS Date Results Date Results Date Results Date Results
60
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4
My experience of hormone therapy Ask your doctor to tell you about the possible side effects of the hormone treatment that they have prescribed and what practical steps you can take to reduce these side effects. It is very important to be aware of these possible side effects — including the effects on your libido, energy and mood — and to talk about helpful strategies for managing these before you begin treatment. You can then use these pages to keep a record of your experience with hormone therapy, the side effects you experience, what helps you to manage these and any aspect of your treatment that you would like to discuss with your doctor. You may also want to chat to members of your local support group about their experiences with hormone therapy and what has helped them to manage side effects.
Use these pages for your own and your doctor’s notes about your hormone therapy treatment.
Prostate Cancer Foundation of Australia
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4
My experience of hormone therapy
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4
Chemotherapy & bisphosphonates Chemotherapy is used for prostate cancer that has spread outside the prostate gland and is no longer responding to hormone therapy. Chemotherapy is given by an intravenous (IV) infusion into a vein. Your doctor may also prescribe treatment with bisphosphonates to protect your bones from the damaging effects of cancer by forming a coating on the bone surface. Bisphosphonates are given by an IV injection. If chemotherapy and/or bisphosphonates have been planned as part of your treatment, ask your health care team to help you fill in this summary of contacts and your planned treatment.
Contact person for any concerns after treatment During office hours
Name
phone 
After hours Name
phone
Hospital/treatment centre
Name & contact details of health professionals Medical oncologist Oncology nurse Other heaLth care professional
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4
Treatment summary Name of chemo drug/s
Number of cycles planned
Number of cycles given
Schedule of cycles For example: once every 3 weeks, weekly for 3 weeks with 1 rest week
Date treatment began
Date treatment ended
Dose and schedule of dexamethasone to take before treatment
Name of bisphosphonates Planned schedule of treatment with bisphosphonates
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Is this treatment part of a clinical trial? ď Ł Yes
ď Ł No
Name of clinical trial Trial number
Supportive medicines prescribed and recommended dose (These are medicines that are prescribed to help with side effects of chemo, such as nausea and diarrhoea.)
Blood test results Your doctor will order blood tests before and during your chemo treatment. You can use this space to keep a summary of these blood test results.
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My experience of chemotherapy Use the pages that follow to keep a record of your experience with chemotherapy and bisphosphonates, the side effects you experienced, what helped you to manage side effects and any aspect of your treatment that you would like to discuss with your health care team. Members of your health care team will also have suggestions about managing side effects, which you may want to write down here.
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My experience of chemotherapy
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Depression, anxiety & prostate cancer Having prostate cancer and the treatments used for prostate cancer can have a profound effect on your emotions and mood. Some men will go on to develop depression and anxiety — clinical illnesses, for which help and effective treatments are available. You may like to use these pages to keep a record of treatments that you have tried and what has helped you.
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Depression, anxiety & prostate cancer
Find information and support services for depression and anxiety on pages 117–119 of your organiser, by visiting www.beyondblue.org.au or calling beyondblue on 1300 22 4636.
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Erection problems after treatment Treatment for prostate cancer frequently causes problems with having erections (known as erectile dysfunction or ED). Erections can be improved and the best chance of doing that is talking to your doctors sooner rather than later. Your doctor may introduce you to another health professional specialising in sexual issues. Support groups can also provide you and your wife or partner with practical support. You may like to use these pages to keep a record of treatments that you have tried and what has helped you.
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Erection problems after treatment
Find information and support services for ED on pages 120–121 of your organiser, by visiting www.impotenceaustralia.com.au or calling Impotence Australia on 1800 800 614.
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Urinary & bowel continence after treatment Problems with urinary incontinence are common after treatment for prostate cancer — but there are exercises, products and other treatments that can help. Your doctor may introduce you to another health professional specialising in continence issues. Support groups can also provide you and your wife or partner with practical support. Bowel problems may also develop after treatment, especially following radiotherapy. Your doctor or radiation oncologist can provide advice or prescribe medicines to help. You may like to use these pages to keep a record of treatments that you have tried and what has helped you.
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Urinary & bowel continence after treatment
Find information and support services for continence problems on pages 122–124 of your organiser or by calling The Continence Foundation of Australia’s free and confidential national helpline on 1800 33 00 66.
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Complementary therapies The whole body and mind needs care and attention during treatments for cancer. Complementary therapies such as meditation, massage and acupuncture help to complement traditional medical treatments. These therapies can help you to manage a range of cancer symptoms and side effects of treatment, including pain, fatigue and emotional distress. There is good evidence that many of these therapies support overall well-being and quality of life. Many men with prostate cancer are also interested in trying nutritional and herbal medicines. If this is something you are interested in, it’s really important that you chat to your GP or specialist and tell them about what you want to try. Your doctor needs to know about everything you are taking so they can ensure that the traditional and complementary therapies won’t interfere with each other. Your doctor or another member of your health care team may also be able to recommend a complementary health care practitioner that has experience with prostate cancer. Use the next couple of pages to write down therapies that you have tried or are interested in trying. You may like to record questions for your doctor and their response, or you may like to record your experience of using a complementary therapy. The American Cancer Society web site www.cancer.org provides helpful information on different types of complementary therapies and includes current evidence about the effectiveness of different treatments. You will find the information in the ‘Treatment and Side Effects’ section of the web site.
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My experience of complementary therapies Date
Type of therapy, notes, questions & experience
e.g. 16/5/2011
e.g. Have heard a lot about tomato paste and turmeric — need to talk to urologist about these at next visit.
e.g. 20/5/2011
e.g. Massage — wife suggested I get a massage because I have been quite anxious after finishing treatment. Very relaxing and helped with sleep.
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Date
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Type of therapy, notes, questions & experience
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Notes
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Appointment summary Appointment date
Appointment with
Reason for appointment
Ask your partner or a friend to come to medical appointments with you — they can give you support as well as providing an extra pair of ears to listen to and remember information from your doctor.
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Appointment date
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Reason for appointment
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Appointment date
Appointment with
Reason for appointment
Need more pages? If you need more appointment summary pages, you can download them any time from www.pcfa.org.au under the ‘Resources’ tab or call PCFA on 1800 22 00 99 to have extra pages sent to you.
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Questions & notes for medical appointments Use these pages to jot down questions you want to ask at particular medical appointments and leave space to record the answers. Date & Appointment with
Questions, notes & answers
Ask your doctor if you can make a recording of your visit so that you can replay the information when you get home.
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Questions, notes & answers
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Medical expense record Use these pages to keep an at-a-glance summary of your medical expenses. Remember that you can download more pages at any time from www.pcfa.org.au
Date, service or treatment & cost
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Date & $ amount received from Medicare
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$ amount received from health fund
My outof-pocket expense
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Date, service or treatment & cost
Date & $ amount received from Medicare
$ amount received from health fund
My outof-pocket expense
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Notes
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Thoughts & notes
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Thoughts & notes
“Over the weeks since the operation I had been relying on pads as my urinary continence could not be relied on. Last week the pads were put away and therefore another bottle of champagne had to be opened to mark this significant rite of passage.� Greg Wallace — Prostate cancer survivor Prostate Cancer Foundation of Australia
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Thoughts & notes
“Post-treatment is probably the time when many men get depressed. Support groups can be a fantastic help; they can usually give you more time than your local medical and nursing staff.” Warwick Rowell — Prostate cancer survivor Prostate Cancer Foundation of Australia
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Thoughts & notes
“Affection and hugs every day are a most reassuring therapy — for both partners. Keep your physical closeness. Men, do not turn away from your partner because a small part of your body does not work as well as it used to. Your partner is also transported into your uninvited experience so don’t forget their needs.” Roz Baker — Partner of prostate cancer survivor Prostate Cancer Foundation of Australia
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Thoughts & notes
“I appreciate that we all adopt different paths when we learn that we have cancer. I respect the disease and recognise that it is still present in my body and that I am working with it to get better.” Richard McGinn — Prostate cancer survivor Prostate Cancer Foundation of Australia
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Further information & support for men living with prostate cancer Sometimes finding the information or service you need doesn’t seem as simple as it should be! We’ve done our best to provide the most helpful and direct contact numbers, web sites and publications under each subject area so you can quickly access the information or support you need. You’ll notice different symbols next to some of the resources and services so you can quickly recognise what type they are. Some of the resources listed in this section are included in the free Localised Prostate Cancer Pack, so if you are newly diagnosed with localised prostate cancer and have received a pack, you will already have these resources.
Offers person-to-person contact
Web site
Phone information and/or counselling
Fact sheets and brochures
Books and booklets
A publication that can be downloaded free as a PDF file
DVD
Information and services in languages other than English
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Support groups & online communities Your local prostate cancer support group is often the best place to start when you are coming to terms with a diagnosis of prostate cancer and you need to chat with someone who understands.
PCFA prostate cancer support
A diagnosis of prostate cancer can cause initial shock and fear: men and their families face difficult decisions about the next steps, but know very little about the disease, its treatment options and the possible results. Making contact with a support group allows you to talk about your situation in a relaxed environment. The information you gain from a support group can help with decision-making and hearing the experiences of other men, their wives and partners can be very reassuring. Members of support groups find that their attitude improves, their confidence increases and they have more rewarding lives and relationships. PCFA has a network of more than 130 support groups across all states and territories in Australia that meet regularly. Finding your local support group is an important first step for many men and their families in living well with prostate cancer.
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To find a group convenient to you:
• Call the PCFA free information line on 1800 22 00 99 • V isit PCFA’s web site www.pcfa.org.au and choose the ‘Support Groups’ tab. You can then select your state or territory, and then your town, city or area to reveal the details of the local support groups, their meetings and some background history.
Online support Ask Andy
www.prostatehealth.org.au Choose ‘Ask Andy’ from the main menu Ask Andy is an email helpline operated by the Cancer Helpline Service of The Cancer Council Victoria and the Australian Prostate Cancer Collaboration. As well as emailing your own questions, you can browse or search the helpline to find answers to frequently asked questions.
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General prostate cancer & treatment information Australian web sites & helplines These are all good starting points to find a range of up-to-date and credible information about prostate cancer and to search or ask for more specific information that you need. Prostate Cancer Foundation of Australia
www.pcfa.org.au 1800 22 00 99 Prostate Cancer Foundation of Australia (PCFA) is the peak organisation for prostate cancer in Australia, supporting men with the diagnosis and treatment of prostate cancer, funding research into prostate cancer and raising awareness of prostate cancer in the general community. The informative web site provides personal stories from men living with prostate cancer — describing their experiences of decision-making, treatment and side effects. The site also includes a range of helpful booklets that you can download free of charge (or you can call to have them sent to you) as well as books and DVDs that are available for sale. PCFA’s Helpline is open Monday to Friday from 9 am to 5 pm AEST and can send you information on prostate cancer and put you in touch with your local support group.
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Lions Australian Prostate Cancer Web site
www.prostatehealth.org.au This web site, established by the Australian Prostate Cancer Collaboration, is where you can download the popular Mr PHIP series of information sheets on prostate cancer. The site also includes plenty of helpful links, an email helpline, and tools to help you locate medical specialists and support groups. Mr PHIP Information Sheet 1 ‘Should I be tested?’ is available to download in a range of community languages. Urological Society of Australia and New Zealand
www.usanz.org.au This is the professional organisation for urologists (urological surgeons) in Australasia. Their web site includes information on prostate cancer and its treatment and you can search for a urologist in your area. Andrology Australia
www.andrologyaustralia.org 1300 303 878 Provides information on male reproductive health, including prostate disease, prostate cancer, testicular cancer, male infertility, testosterone deficiency, erectile dysfunction and much more. The web site has a wide range of fact sheets and booklets available to download. You can also subscribe to receive free monthly email updates on men’s health and to receive Andrology Australia’s free quarterly newsletter The Healthy Male.
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7 Cancer Council Australia
www.cancer.org.au Cancer Council Helpline 13 11 20 The Cancer Council web site includes links to its member web sites in each state and territory, and these member sites provide detailed information on all aspects of cancer. Each state or territory web site includes a cancer services directory where you can look for different types of support — emotional, financial, transport, interpreter services, domestic help, community transport services, support and services for carers, support for living at home and much more. For the cost of a local call, the helpline connects you to your local cancer organisation from 9 am to 5 pm, Monday to Friday. Trained staff can answer your questions, provide information and support, send you information and tell you about local support services. In some areas, the helpline has extended hours, has health professionals on staff and has multilingual services. Please ask what services are available in your state or territory. The Cancer Council has written information in many languages.You can call their helpline through TIS National to ask for information. Visit the Cancer Council NSW www.cancercouncil.com.au or Cancer Council SA www.cancersa.org.au to access translated information online. Cancer Council Victoria has a dedicated part of their web site for information in other languages, visit www.cancervic.org.au/multilingual
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7 Printed information LOCALISED PROSTATE CANCER: A GUIDE FOR MEN AND THEIR FAMILIES — 4th EDITION, 2010
Australian Cancer Network & Australian Prostate Cancer Collaboration
This popular free book explains the tests and treatments for prostate cancer and is designed to help men and their families make treatment decisions for cancer that has not spread beyond the prostate. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. A copy of this book is included in the Localised Prostate Cancer Pack. ADVANCED PROSTATE CANCER: A GUIDE FOR MEN AND THEIR FAMILIES — 1st EDITION, 2009
Australian Cancer Network & Australian Prostate Cancer Collaboration
Based on the same principles and success of Localised prostate cancer: a guide for men and their families, this book is designed to help men and their families make treatment decisions for prostate cancer that has spread beyond the prostate. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. WHAT WOMEN & THEIR MEN NEED TO KNOW ABOUT PROSTATE CANCER — 2nd REVISED EDITION
Irena Madjar, RN, MA, PhD, in collaboration with Gail Tingle Published by Prostate Survival Alliance Inc., Newcastle
Based on sound medical information and personal experience of women who have lived through their partners’ diagnosis and treatment of prostate cancer, this book offers personal insight into prostate cancer and its treatment. $15 including postage by calling PCFA on 1800 22 00 99. A copy of this book is included in the Localised Prostate Cancer Pack.
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7 PROSTATE CANCER: YOUR GUIDE TO THE DISEASE,TREATMENT OPTIONS AND OUTCOMES — 3RD EDITION 2010
Dr Prem Rashid, Consultant Urologist Published by Uronorth Group, Port Macquarie
A comprehensive guide to prostate cancer written by a leading Australian urologist. The book provides detailed information about each of the treatment options available for prostate cancer in Australia and includes 13 personal stories about living with prostate cancer. $40 including postage by calling PCFA on 1800 22 00 99. COPING WITH RADIOTHERAPY: FOR PEOPLE WITH CANCER,THEIR FAMILIES AND FRIENDS
Cancer Council Victoria
Includes information about different forms of radiotherapy and how they are given, what happens during treatment and coping with side effects. Download free of charge from www.cancervic.org.au or by calling13 11 20.
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7 Dr Charles ‘Snuffy’ Myers publications
Dr Charles ‘Snuffy’ Myers is an American medical oncologist and a prostate cancer survivor. Dr Myers writes widely about prostate cancer research and treatments with the goal of ‘giving patients the information they need to survive’. You can read more and subscribe to his newsletter at www.prostateforum.com Three of Dr Myers’ books are available to purchase through PCFA: EATING YOUR WAY TO BETTER HEALTH:THE PROSTATE FORUM NUTRITION GUIDE
Using an evidence-based approach, Dr Myers looks at the many nutrients and foods that have been shown to slow prostate cancer growth. The book explains how to set up your pantry and kitchen to prepare healthier meals and includes a variety of delicious recipes. $30 including postage by calling PCFA on 1800 22 00 99. BEATING PROSTATE CANCER: HORMONAL THERAPY & DIET
In this highly practical and easy-to-understand book, Dr Myers provides insight into using androgen blockade as a sole or adjunct treatment for prostate cancer. The book includes Dr Myers’ most recent updates on diet and supplements. $30 including postage by calling PCFA on 1800 22 00 99.
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7 DVDs SO, I HAVE PROSTATE CANCER, WHAT NOW? A GUIDE FOR MEN AND THEIR PARTNERS LIVING WITH PROSTATE CANCER
A prostate cancer education initiative supported by Astra Zeneca
This DVD covers all aspects of prostate cancer, from detection and diagnosis, though to treatment and side effects. It features commentary by leading health professionals as well as both prostate cancer survivors and carers. $15 including postage by calling PCFA on 1800 22 00 99. A copy of this DVD is included in the Localised Prostate Cancer Pack. SO HOW DO YOU CHOOSE? A GUIDE FOR MEN AND THEIR PARTNERS ON HOW TO CHOOSE A TREATMENT OPTION FOR PROSTATE CANCER
This DVD provides a comprehensive review of treatment options available for prostate cancer, providing men and their partners with information to help with the often difficult choices between the increasing number of treatment options available. $15 plus postage and handling from www.menshealthmatters.com.au
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7 International prostate cancer web sites For people who want to do some further reading, these USA and UK-based prostate cancer web sites are rich with content and helpful publications that you can download. Keep in mind that not all treatment information you find on international sites may apply to men in Australia. Us TOO www.ustoo.com (USA) Prostate Pointers www.prostatepointers.org Prostate Pointers is a popular online prostate community from Us TOO. The online community features moderated mailing lists on specific topics where you can read about other people’s experiences of prostate cancer and contribute your own thoughts and experiences. THE “NEW” PROSTATE CANCER INFOLINK SOCIAL NETWORK www.prostatecancerinfolink.ning.com An international social networking site for anyone with an interest in prostate cancer (patients, family members, urologists, oncologists, other health care professionals, activists and advocates) to share information and to seek, receive and offer support. The Prostate Net (USA) www.prostatenet.com Prostate Cancer Research Institute (USA) www.prostate-cancer.org The Prostate Cancer Charity (UK) www.prostate-cancer.org.uk
Information about support services and resources may change reasonably quickly. Keep an eye on the ‘Resources’ section of www.pcfa.org.au for regular updates to this section of the organiser. You can then print the pages, hole punch them and add them to your organiser.
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Information & support for gay & bisexual men These recommended resources provide information and support that is specific to the needs and concerns of gay and bisexual men who have prostate cancer. A GAY MAN’S GUIDE TO PROSTATE CANCER
Gerald Perlman, PhD & Jack Drescher, MD — Editors, 2005
This insightful book is divided into two sections: the first includes 5 chapters on professional perspectives, including gay sex after prostate cancer treatment, psychological issues and a gay urologist’s point of view. The second section of the book provides personal accounts of gay men’s experiences with prostate cancer — aged from 33 to 84 years. Available through www.amazon.com IT’S A REAL BUGGER ISN’T IT DEAR? STORIES OF DIFFERENT SEXUALITY AND CANCER
GLBTIQ with Cancer Network & Gay Men’s Health
This booklet details the personal journeys, through stories and poems, of gay, lesbian, transgender, intersex or queer (GLBTIQ) people who have had cancer, including prostate cancer. Available to download free of charge from the Aids Council of SA Inc. www.acsa.org.au, by calling 08 8334 1611 or Freecall 1800 888 559.
WEB SITES MALECARE
www.malecare.org OUT WITH CANCER
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Information & support in other languages If English is not your first language, there are a number of services that can help you to access information and support in a range of community languages.
Translating & Interpreting Service (TIS) National
Phone interpreting
You can contact many government, non-profit, community and medical services free of charge through an interpreter by phoning TIS National on 13 14 50. When you phone TIS National, tell the operator the language you speak and let them know the name and phone number of who you wish to contact — such as the Cancer Council Helpline on 13 11 20. The interpreter and the helpline will talk together with you on the same phone line. Organisations and services that you can contact free of charge through TIS National will usually list this service in the organisation’s contact details. Doctor’s appointments
You can ask your doctor, specialist or pharmacist to contact TIS National to translate details of your appointment, test results or information about your medicines. You can also ask your doctor or hospital to organise for an interpreter to attend your appointment with you. This service is available free of charge, but does need to be booked in advance.
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7 Further information & support
Many organisations have information translated into languages other than English. Where an organisation has this service available, we have included the language symbol and explained the service available.
If you are deaf, hearing-impaired or speech-impaired, you can call all of the services listed in this section through the National Relay Service using the internet, a telephone typewriter (TTY), or a regular phone (for people with speech impairment). TTY users call 13 36 77 or 1800 555 677 to call1800 numbers. Speak and Listen users call 1300 555 727 or 1800 555 727 to call 1800 numbers.
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Your emotional health After being told you have prostate cancer, you may feel numb, angry, anxious, nervous, sad or teary. All of these feelings are normal and will usually begin to settle over time. For some men, these intense feelings may continue for some time. The information and support listed on the next couple of pages can help you understand your reactions to a diagnosis of prostate cancer, find ways of dealing with difficulties, recognise when you may be anxious or depressed and find more help when you need it.
If you need urgent help at any time of the day or night call the Lifeline 24-hour telephone counselling service on 13 11 14.
Who can help? Never be shy about asking for professional support if you think you may need it. It’s often helpful to talk to someone who is outside your immediate support circle to give you a different perspective and to help you work out practical ways of coping. Good people to talk to might include: • A social worker at your treatment centre or hospital — they may also refer you to a psychologist or counsellor with specific expertise for your needs. • A psychologist or counsellor that you have found helpful in the past or who has been recommended by a friend or support group member. • Your family GP. • A urology or oncology nurse. • Your family minister, priest or other spiritual advisor.
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7 Cancer Council — counselling services
Helpline 13 11 20 As well as information and support available through their helpline, Cancer Councils in each state and territory have different types of specialised cancer counselling services available — both over the phone and face to face. These are usually available at low or no cost. Helpline staff can also tell you more about Cancer Connect, a free telephone support program that links people affected by cancer to a specially trained volunteer who has been through a similar cancer experience. The Australian Psychological Society Ltd
www.psychology.org.au 1800 333 497 The Australian Psychological Society (APS) is the largest professional association for psychologists in Australia. Visit their web site and click on ‘Find a psychologist’ or call to find a psychologist in your local area who has experience and skills in the particular area you need. Coping with a diagnosis of prostate cancer
Cancer Council Queensland
This booklet looks at issues you may face after diagnosis and strategies for coping, including steps to reduce the anxiety associated with decision-making and practical ways to reduce body tension. Download free of charge from www.cancerqld.org.au or by calling 13 11 20. A copy of this booklet is included in the Localised Prostate Cancer Pack.
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7 beyondblue: the national depression initiative
www.beyondblue.org.au Info line 1300 22 4636 beyondblue provides information on depression and anxiety disorders. You can download fact sheets from the web site or have them sent to you. You can also call the Info line for more information. b eyondblue has fact sheets translated into many community languages, which you can print or order free of charge from the web site by clicking on ‘Other languages’ or call the beyondblue info line to have them sent to you. beyondblue and PCFA have produced two helpful guides on depression and anxiety specifically for men with prostate cancer and their families. Prostate cancer and the risk of depression/anxiety beyondblue & PCFA
This fact sheet explains depression and anxiety and their links with prostate cancer. It includes a symptoms checklist, treatment information and self-help ideas. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. A copy of this fact sheet is included in the Localised Prostate Cancer Pack. Maintaining your well-being: Information on depression and anxiety for men with prostate cancer and their partners beyondblue & PCFA
This useful booklet explains common reactions to a diagnosis of prostate cancer, helpful strategies and ways of thinking, recognising signs of depression and anxiety, treatments, and where to get help. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. A copy of this booklet is included in the Localised Prostate Cancer Pack.
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Relationships, intimacy & erectile dysfunction WEB SITES & Counselling services Impotence Australia
www.impotenceaustralia.com.au 1800 800 614 Impotence Australia offers phone counselling by trained sex therapists for sexual and relationship issues. You can also find information online or have information sent to you. Click on ‘Find a practitioner’ to search for a health professional in your local area who specialises in ED and other areas of sexual health. MensLine Australia
www.menslineaus.org.au 1300 78 99 78 Mensline Australia offers a free 24-hour a day, 7-day a week phone and online counselling, information and referral service for men with family and relationship concerns. The service is for all men, in all types of relationships. There are also Vietnamese, Arabic and Indigenous MensLine sites and counselling services. You can access these from the home pages of the main site. Relationships Australia
www.relationships.com.au 1300 364 277 Relationships Australia is a network of community based, not-for-profit organisations providing relationship support services in many locations across Australia. Check their web site or call to find out about counselling services, courses and useful reading. 120
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7 Printed information Sex after treatment: Prostate cancer
Cancer Council Queensland
This helpful booklet explains sexual function, how it is affected by prostate cancer treatment, and the assistance and treatments that are available to help. Download free of charge from www.cancerqld.org.au or by calling 13 11 20. A copy of this booklet is included in the Localised Prostate Cancer Pack. treatED: Prostate Edition PCFA & Impotence Australia with an education grant from Elli Lily
This booklet provides information about how treatments for prostate cancer can affect erections and how early intervention can improve erections. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. A copy of this booklet is included in the Localised Prostate Cancer Pack. treatED: Prostate Edition has been translated into Greek, Italian, Vietnamese, Chinese and Arabic and is available to download in these languages from www.pcfa.org.au or by calling 1800 22 00 99. Sexuality, Intimacy and Cancer: A guide for people with cancer,their families and friends
Cancer Council NSW
For people who want further information, this booklet is available from the Cancer Council NSW. Download free of charge from www.cancercouncil.com.au and choose ‘Booklets and online information’ from the home page or call 13 11 20.
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Continence information & support Web sites & helplines The Continence Foundation Of Australia
www.continence.org.au Helpline 1800 33 00 66 The Continence Foundation of Australia has a free national helpline offering professional and confidential advice on managing bowel or bladder problems and provides referral to continence services, including continence physiotherapists. The helpline is staffed by experienced continence nurse advisors, and is available 8 am to 8 pm AEST, Monday to Friday. The foundation’s web site includes continence information and an online forum. You can request free printed brochures from the helpline, including brochures in languages other than English. The National Public Toilet Map
www.toiletmap.gov.au Helpline 1800 990 646 The National Public Toilet Map shows the location of more than 14 000 public and private toilet facilities across Australia, allowing you to locate the nearest toilets and to plan toilet breaks for short or long trips. You can access the map through any mobile phone with an internet browser or with Apple’s iPhone. The Toilet Map Helpline is available 9 am to 5 pm AEST, Monday to Friday. People who do not speak English can access the helpline through the Translating and Interpreting Service (TIS) from anywhere in Australia — call TIS on 13 14 50 and ask to be connected to 1800 990 646.
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7 Australian Physiotherapy Association
www.physiotherapy.asn.au Click on ‘Find a Physio’ to search for a physiotherapist in your local area and select ‘Continence’ under ‘Clinical Area’. You may also want to select ‘Men’s Health’ under ‘Other areas of interest’. There’s also an option to search for physios who speak languages other than English.
Continence products BrightSky Australia
www.brightsky.com.au 1300 88 66 01— product orders BrightSky Australia is a leading supplier of non-branded continence products. You can order through their online store or by phone. The clinical team at BrightSky can also provide professional advice on continence and wound care (including product advice and fittings) by phone or appointment by calling 02 8741 5600.
Printed information & DVDs Conquering Incontinence
Peter Dornan Published by Allen & Unwin, 2003
Peter Dornan is a sports physiotherapist, author, founder and leader of the Brisbane Prostate Cancer Support Group, and a prostate cancer survivor who was left severely incontinent after a radical prostatectomy in 1996. Peter has developed a comprehensive program of exercises for overcoming incontinence, which he details in this easy-to-read book. The book also offers encouragement and personal insights into broader issues such as erectile dysfunction and depression. $23 including postage by calling PCFA on 1800 22 00 99.
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7 Pelvic Floor Exercises for Men
Associate Professor Pauline Chiarelli & PCFA
Associate Professor Pauline Chiarelli is an author and leading national speaker on pelvic floor exercises for men and women. Pauline communicates to men the importance of strong pelvic floor muscles in a positive, uplifting style, helping you to develop an exercise plan and to become the boss of your bladder! This DVD is quite graphic, so it’s good to be aware of that before watching it. $10 including postage by calling PCFA on 1800 22 00 99. Pelvic Floor Muscle Training for Men
The Continence Foundation of Australia
This brochure teaches you how to locate your pelvic floor muscles, how to train them and then make that training part of your everyday life. Available by calling The Continence Foundation of Australia on 1800 33 00 66. A copy of this brochure is included in the Localised Prostate Cancer Pack. Continence and prostate: a guide for men undergoing prostate surgery
The Continence Foundation of Australia & PCFA
A helpful booklet about urinary incontinence following prostate surgery, with practical information to help before and after surgery. Download free of charge from www.pcfa.org.au or by calling PCFA on 1800 22 00 99. A copy of this booklet is included in the Localised Prostate Cancer Pack.
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Support for living at home Having cancer and cancer treatment can mean that you need extra help with your daily living at home. You may need nursing care or help with housework, meals and gardening. There are many services available to help — don’t be afraid to ask!
Who to ask It’s often a matter of asking the right person to point you in the direction of the support or service you need. Good places to start are: • A social worker at the hospital where you are being treated. • Your family GP. • Your local council — listed in the White Pages® under the council name. • C ommonwealth Respite and Carelink Centres 1800 052 222 provide a single point of contact to make it easier to find out about community care services that support independent living for older people, people with disabilities and those who provide care and services. • T he Cancer Council Helpline 13 11 20 can also help identify the right service for you.
Types of help available Community or district nurses — help with bathing, changing dressings, taking medicine, managing the side effects of treatment, and offering general support and advice. Domiciliary care services can provide physical assistance, rehabilitation and personal care, as well as providing respite and support for carers. Home care services including home cleaning, home maintenance, gardening, home visiting, pet walking and grooming. Meals on Wheels deliver affordable, nutritious meals and friendly contact for people and their carers who are not able to shop or cook meals for themselves. For details of services in your area visit www.mealsonwheels.org.au or check the White Pages® for the contact details of your local office. Some private meal services also provide meals. Your social worker can tell you more.
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Travel & accommodation assistance General travel assistance If your health or financial circumstances make it difficult for you to travel independently to and from medical appointments, there are many community and volunteer services that can help you. There are different services available in each state and territory and within different areas and they are administered by different levels of government or other support organisations. You can find out more from:
• A social worker at the hospital where you are being treated. • Your family GP. • T he Australian Red Cross — for state or territory office details got to www.redcross.org.au or look up ‘Australian Red Cross’ in the White Pages®. • Your local council. • C alling the Cancer Council Help Line on 13 11 20 and asking about transport services in your local area. • V isiting your local Cancer Council web site and looking at their support services information.
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7 Assistance for men living in rural & remote areas Men who live in rural or remote communities often need to travel to a metropolitan area for treatment. There are schemes operated by each state and territory health department that can help towards the costs of your accommodation and travel — called PATS. The eligibility requirements for financial assistance can vary, so please contact your local scheme below for more information. We have only included a phone number when there is a central number available to call. In some states and territories, there are separate phone numbers to call for different regions — you can find these phone numbers on each of the web sites listed below, or you can look up your state or territory health department in the White Pages®. The Cancer Council Help Line on 13 11 20 can also tell you about the types of financial and/or accommodation assistance you may be eligible for. New South Wales Transport for Health — IPTAAS (Isolated Patient Travel and Accommodation Assistance Scheme) www.health.nsw.gov.au Enter ‘IPTAAS’ into the search box Victorian Patient Transport Assistance Scheme (VPTAS) www.health.vic.gov.au Enter ‘VPTAS’ into the search box Queensland Patient Travel Subsidy Scheme (PTSS) www.health.qld.gov.au Enter ‘PTSS’ into the search box The Integrated Patient Transport Unit can also provide information on 13 HEALTH (13 43 25 84) SA Patient Assistance Transport Scheme (PATS) www.countryhealthsa.sa.gov.au Enter ‘PATS’ into the search box Or you can call the PATS Central Office on 1800 188 115 Tasmanian Patient Travel Assistance Scheme (PTAS) www.dhhs.tas.gov.au Enter ‘PTAS’ in to the search box
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7 WA Patients’ Assisted Travel Scheme (PATS) www.wacountry.health.wa.gov.au Enter ‘PATS’ into the search box ACT Interstate Patient Travel Assistance Scheme (IPTAS) www.health.act.gov.au Enter ‘IPTAS’ into the search box Or call 02 6205 3299 Northern Territory Patient Assistance Travel Scheme (PATS) www.health.nt.gov.au Enter ‘PATS’ into the search box If you are going to be away from home for some time for treatment, you may like to find out about prostate cancer support groups in the area where you are having treatment. Prostate Cancer Foundation of Australia can help you locate the support group closest to your treatment centre by calling 1800 22 00 99, or you can visit www.pcfa.org.au and select the ‘Support Groups’ tab.
Accommodation services Depending on the length of your treatment, you may need accommodation away from home. In many cases, the PATS schemes listed can help towards the cost of this accommodation. Some of the major cancer treatment centres have short-term accommodation for patients and their families: ask the social worker at your hospital or treatment centre for more information. The Cancer Council in your state or territory may own and operate accommodation facilities as well as listing other accommodation operators. You can find information about these facilities on your Cancer Council’s web site or by calling 13 11 20. Some hotels and motels may provide lower rates for people who are receiving cancer treatment at a nearby hospital, so always ask if there is a special rate available. There is usually a high demand for subsidised accommodation close to treatment centres, so it’s best to inquire as soon as you know your treatment dates.
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Financial matters Having prostate cancer can affect your finances too. You will often have extra costs — for treatment, medicines and transport — and you may have a reduced income at the same time. Sometimes it’s difficult to talk about your financial situation, but having cancer can make things tough and it’s always worth asking if there is help available. Start by talking to a social worker at your hospital or treatment centre. They can often put you directly in touch with agencies that can help. Helpful agencies you can contact yourself include: Centrelink
www.centrelink.gov.au 13 27 17 13 12 02 — to speak to someone in a language other than English during business hours Centrelink can tell you about benefits and allowances for people experiencing financial difficulties due to illness. Benefits include Sickness Allowance, Disability Support Pension, Mobility Allowance, Carer Payment and Carer Allowance. Department of Veterans’ Affairs
www.dva.gov.au 1300 55 1918 The department provides a range of financial and medical benefits for war veterans and their eligible family members. Income protection,trauma, disability or life insurance, and superannuation
These can often be accessed during times of serious illness. You will need to talk to your fund provider about accessing these funds. The Australian Prudential Regulation Authority (APRA)
www.apra.gov.au 1300 13 10 60 APRA is another useful source of information about superannuation entitlements.
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Medicare & private health insurance Medicare
www.medicare.gov.au or call 13 20 11 PBS Safety Net 1800 020 613 Medicare can help in a number of different ways when you have higher medical expenses from doctor’s visits, tests, treatment and prescription medicines. The Medicare Safety Net: Once you have reached a certain level of outof-pocket costs for non-hospital medical costs in a calendar year (Safety Net threshold), you can qualify for a higher rate of reimbursement from Medicare. Net medical expenses tax offset: If your net medical expenses (after Medicare and private health refunds) are over the Australian Tax Office’s threshold, you can claim an offset of 20% in your tax return. The PBS Safety Net helps with the cost of prescription medicines. When you spend over a certain amount (threshold) in a calendar year, you can receive a PBS Safety Net Card, which will help with the cost of medicines over the remainder of the year. Your pharmacist can provide you with the PBS Safety Net Prescription Record Form. Call or go online to find out more about any of these services. Private health insurance
If you have private health insurance, you can contact your insurer to find out how much they will contribute towards the cost of different treatments, hospital stays, devices and private prescription medicines. The amount that you can claim may vary depending on the fund, your level of cover, how long you have been a member of that fund and how much you have already claimed towards that category of service in the current year. Most health insurers have a national 1300 number you can call for more information. If you don’t feel up to dealing with doctor’s bills and claim forms, ask a family member or friend to help you.
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Information & support for carers Carers are usually family members (often a partner) who provide unpaid care for a man with prostate cancer. Carers offer an enormous amount of practical and emotional support — and they need plenty of information and support themselves. PCFA support groups encourage and welcome wives, partners and carers. A support group can be a great source of information, inspiration, empathy (and humour) and often allows the opportunity to meet other partners and carers with shared concerns and interests. Other useful contact numbers and web sites for carers include: Carers Australia
www.carersaustralia.com.au 1800 242 636 — Carer Advisory and Counselling Service Carers Australia works with carers associations in each state and territory to help improve the lives of carers. You can contact the Carer Advisory and Counselling Service on the Freecall number from anywhere in Australia for assistance and advice, referral to services, and practical written information, including the popular Carer Information Kit. On the Carers Australia web site entry page, choose your state or territory to go to your local Carers web site where you will find a wide range of information about practical matters, finding services, looking after yourself and more. o speak to someone in a language other than English, call TIS National T on 13 14 50 and ask to be connected to your local Carers office on 1800 242 636. You can also request a Carer Information Kit in a wide range of community languages.
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7 Commonwealth Respite and Carelink Centres
1800 052 222 These centres provide a single point of contact to make it easier to find out about community care services that support independent living for older people, people with disabilities and those who provide care and services. The service is free and confidential. Anyone can ring the Freecall number to find the service they need. National Respite for Carers Program
1800 052 222 — during business hours 1800 059 059 — emergency respite support outside business hours Respite gives carers important time out from their caring role. Regular breaks give you time to take care of your own life and well-being: to re-energise, enjoy activities that aren’t possible while caring and to nurture the other relationships in your life. They give the person you support a break, too. There are many different types of planned and emergency respite available, depending on your needs. There are respite services available for people with specific cultural needs and who speak languages other than English. Palliative Care Australia
www.palliativecare.org.au 1800 660 055 To find out more about palliative care services available in your area, visit the web site and click on the icon for the ‘National Palliative Care Service Directory’ or call the information line. While palliative care itself is not aimed at curing cancer, it can be offered by itself or together with treatment to help reduce your symptoms, give you a better quality of life and provide you and your family or carers with emotional and spiritual support. For men with advanced prostate cancer, there are many benefits in thinking about and organising palliative care when you are still quite well.
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Other helpful information & support services If you have found other helpful organisations, web sites or resources yourself you can jot them down on this page so you always have the details where you need them.
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T 1800 22 00 99 F 02 9438 7099 E enquiries@prostate.org.au W www.pcfa.org.au A PO Box 1332, Lane Cove, NSW 1595