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UNDERSTANDING PROSTATE CANCER This booklet was produced by Prostate NOTE TO READER Cancer Foundation of Australia (PCFA) What is known about prostate cancer and to inform men, their families and friends treatments is constantly changing and being about prostate cancer. updated. Please talk to your doctor, who can For more information about prostate give you information that is specific to your cancer, PCFA has a number of resources. unique needs and situation. Please visit PCFA website: pcfa.org.au or call: (02) 9438 7000 / 1800 220 099 (freecall). DISCLAIMER

ACKNOWLEDGEMENTS PCFA develops materials based on the best available evidence and takes advice PCFA gratefully acknowledges the input, from recognised experts in the field; advice and guidance of the men with prostate however, it cannot guarantee and assumes cancer and health professionals who helped no legal responsibility for the currency or in the development of this booklet by offering completeness of the information. their time to review its content. PERIODIC UPDATES We would like to thank: — A /Professor Nick Brook (Urologist) It is planned that PCFA will review this booklet after a period of, but not exceeding, four years. — David Gray (Prostate Cancer Specialist Nurse) ISBN 978–0–9923508–8–8

— Bruce Kynaston (Consumer) ©Prostate Cancer Foundation of Australia 2014 — Dr David Malouf (Urologist) This work is copyright. Apart from any use as permitted under the Copyright Act 1968 no part — Richard Riley (Consumer) may be reproduced by any process without — Elizabeth Watt (Registered Nurse) prior written permission from Prostate Cancer Foundation of Australia. Requests and enquiries — Alyssa White (Cancer Council Australia) concerning reproduction and rights should be addressed to: Contributors: Chief Executive Officer Dr Tim Wong (PCFA) Prostate Cancer Foundation of Australia A/Professor Anthony Lowe (PCFA) PO Box 499 St Leonards NSW 1590 Julie Sykes (PCFA) Sarah Lowe (Cloudmaker Consulting)

Editor: Helen Signy Medical Illustration: Marcus Cremonese Photography: Gavin Jowitt

Featured on the cover:

JOEL PLUMMER DARYL LIM JOON PCFA Ambassador Radiation Oncologist CONTENTS

INTRODUCTION 02

HOW COMMON IS PROSTATE CANCER? 05

WHAT IS THE PROSTATE GLAND? 05

WHAT IS CANCER? 06

WHAT IS PROSTATE CANCER? 06

WHAT ARE THE RISK FACTORS FOR PROSTATE CANCER? 08

REDUCING THE RISK OF DEVELOPING PROSTATE CANCER 09

HOW IS PROSTATE CANCER DETECTED AND DIAGNOSED? 11

QUESTIONS TO ASK YOUR DOCTOR 13

SHOULD I TALK WITH OTHERS ABOUT MY PROSTATE HEALTH? 13

WHERE CAN I GET MORE INFORMATION? 14

GLOSSARY 15 NOTE This booklet aims to raise awareness about prostate This booklet does not need to cancer. It provides general information about this be read from beginning to end. disease, and will help you understand what you can You can just read the sections that are useful to you. do to look after the health of your prostate gland. This booklet should be helpful whether you are in a relationship or single, heterosexual or non- heterosexual, at an age when you don’t think prostate cancer is something you have to think about, or at an age when you’ve been told that it is. The information in this booklet will answer some of your questions about prostate cancer, or help you think of questions to ask your doctor. Partners, families and friends of men who want to know more about prostate cancer may also find this information useful. In this booklet, we use ‘partner’ to mean wife, de-facto, same-sex partner, boyfriend or girlfriend. This booklet does not need to be read from beginning to end. You can just read the sections that are useful to you. If the information you want is not in this booklet, please contact one of the organisations listed in the ‘Where can I get more information?’ section.

In Australia prostate cancer is the most commonly diagnosed cancer in men.

02 | UNDERSTANDING PROSTATE CANCER I was relieved to know that knowledge about prostate cancer dispelled the fear and uncertainty I had. • • •

UNDERSTANDING PROSTATE CANCER | 03 I knew there was something in my body called a prostate but I knew nothing about it beyond that. I didn’t even know what it did. • • •

04 | UNDERSTANDING PROSTATE CANCER HOW COMMON IS PROSTATE CANCER? SURVIVAL RATE Compared with other cancers, In Australia, prostate cancer is the most commonly diagnosed cancer prostate cancer has one of the in men after skin cancer. It is expected that prostate cancer will highest 5-year survival rates continue to be the most common cancer diagnosed in men in 2020. after diagnosis (92%). Over 20,000 men are diagnosed with prostate cancer each year, which accounts for over 30% of all new cases of cancer diagnosed in men. It is the second most common cause of cancer-related death in Australian men. A prostate cancer diagnosis is least common in men under 50 (less than 3%). The chance of a prostate cancer diagnosis increases with age; almost 80% of all diagnoses occur in men aged 60 and over. More than 3,000 men die from prostate cancer in Australia every year, making it the fourth leading cause of death for men.

WHAT IS THE PROSTATE GLAND? Only men have a prostate gland. Knowing what the prostate gland is, and where it is in the body, can help you better understand prostate cancer. The prostate gland is part of the male reproductive system. It sits below the bladder and in front of the rectum. It surrounds the urethra, the passage through which urine and semen pass. The prostate gland produces most of the fluid that makes up semen, which enriches and protects sperm. The prostate gland needs the male hormone testosterone to grow and develop. Testosterone is made in the testicles.

THE MALE REPRODUCTIVE SYSTEM The prostate gland is often described as the size of a walnut and (where the prostate gland is) it is normal for it to grow as men get older. Sometimes this can cause problems, such as difficulty with urinating. These problems are common in older men and are not always symptoms or signs Seminal Prostate gland vesicle of cancer. Urinary bladder Vas deferens

Urethra

Rectum Anus Testicle

Ejaculatory duct Scrotum Penis

UNDERSTANDING PROSTATE CANCER | 05 WHAT IS CANCER? Cancer is a disease of the cells in the body. Changes to our genes can make cells grow and reproduce abnormally. Sometimes they grow into a lump called a tumour. Not all tumours are cancerous. Non-cancerous tumours are called benign and cancerous tumours are called malignant. Malignant tumours are made up of cancer cells. Cancer cells have the ability to spread beyond an organ and around the body. When cancer cells spread to other parts of the body, it is called metastatic cancer.

THE BEGINNING OF CANCER

Abnormal cells Non-invasive cancer Invasive cancer Normal cells

Boundary

Lymph vessel Vein

Artery

WHAT IS PROSTATE CANCER? Prostate cancer occurs when abnormal cells develop in the prostate gland, forming a malignant tumour (cancerous growth). These abnormal cells can continue to multiply and may spread outside the prostate gland into nearby or distant parts of the body. ‘When they hear the word ‘cancer’, people feel they’re going to die straight away.’ Prostate cancer is generally a slow-growing disease, and the majority of men with prostate cancer can live for a long time without painful symptoms or the cancer spreading. Prostate cancer is not infectious or contagious. You cannot ‘catch’ prostate cancer. Symptoms of prostate cancer In the early stage of prostate cancer, there are usually no symptoms. Later stage prostate cancer can cause symptoms that include: — feeling the frequent or sudden need to urinate Symptoms If you see yourself as having any of — finding it difficult to urinate (for example, trouble starting, not being these symptoms, it may be a good idea able to urinate when the feeling is there, poor urine flow) to speak with your doctor. — discomfort when urinating — finding blood in urine — pain in various bones if the cancer has spread to them. These symptoms are not always caused by prostate cancer. They can be caused by other prostate-related diseases that are not cancerous, such as benign prostatic hyperplasia (benign enlargement of the prostate gland) or prostatitis (inflammation of the prostate gland). It is important that you speak with your doctor if you have any of these symptoms.

06 | UNDERSTANDING PROSTATE CANCER Benign Prostatic Hyperplasia (BPH) INFORMATION 14% of Australian men over BPH, sometimes called benign prostatic enlargement, is a condition 40 years old report that they of the prostate gland. It is not cancer and it is common in older men. have been diagnosed with BPH is when the prostate gland becomes larger than normal. a prostate disease. When the prostate gland becomes enlarged, it can ‘squeeze’ the If you’re concerned about urethra and can make it narrower. When this happens, it can cause BPH and prostatitis, please symptoms such as difficulty urinating, a frequent need to urinate contact your doctor or one during the day, feeling an urgent need to pass urine, and a feeling of the organisations listed that the bladder has not emptied completely. Having these symptoms in the ‘Where can I get more information?’ section for more does not mean you are more likely to develop or have prostate information. cancer. BPH can be a progressive condition and symptoms can get worse over time if not treated. Prostatitis Prostatitis is inflammation of the prostate gland, which is sometimes caused by an infection. It is a condition that can affect both younger and older men. Prostatitis is not cancer or a sexually transmissible infection. It is not a sign of prostate cancer. Prostatitis can cause symptoms such as pain or discomfort in the testicles, in the area between the testicles and anus (perineum), difficulty urinating, frequent and painful urination, painful ejaculation, and lower back pain. There are different types of prostatitis, which can be caused by a bacterial infection or non-infectious inflammation. The best treatment depends on the type of prostatitis.

Prostate cancer is not infectious or contagious. You cannot ‘catch’ prostate cancer.

UNDERSTANDING PROSTATE CANCER | 07 WHAT ARE THE RISK FACTORS FOR PROSTATE CANCER? RISK FACTORS If you see yourself as having The risk of cancer is increased by events that happen naturally, some of these risk factors, it the characteristics you are born with, or things you do that increase may be a good idea to speak your chance of developing the disease. This means some risk factors with your doctor about what you can do something about, and others you can’t. you need to do and read the It is important to be aware of all of these risk factors. Remember that following section. risk factors are about the chances of developing a disease. They do not mean that developing the disease is a foregone conclusion. There have been many studies looking at risk factors for prostate cancer. Factors that are most strongly linked to an increased chance of developing prostate cancer are: — Age: Prostate cancer is an age-dependent disease, which means the chance of developing the disease generally increases with age. Prostate cancer is rarely diagnosed in men under 40 and usually affects men over 60. The risk of having prostate cancer by the age of 75 is 1 in 7 men. By the age of 85, the number increases to 1 in 5. — Family history: If a man has a first degree male relative with prostate cancer (father or brother), he has a higher chance of developing prostate cancer than men with no such history. The risk increases again if more than one male relative has had prostate cancer. Risks are also highest for men whose male relatives with prostate cancer were diagnosed when young. Other factors that may increase the risk of developing prostate cancer include: — Genetics: Genes are found in every cell of the body. They control the way the cells in the body grow and behave. Every person has a set of many thousands of genes inherited from both parents. Changes to genes can increase the risk of prostate cancer being passed from parent to child. Although prostate cancer can’t be inherited, a man can inherit genes that can increase the risk. — Diet: There is some evidence to suggest that eating a lot of processed meat or food that is high in fat may increase the risk of developing prostate cancer. — Lifestyle: There is evidence showing that environment and lifestyle can affect prostate cancer risk. For example, Asia has the lowest rates of prostate cancer, but when a man from an Asian country migrates to a Western country, his risk of developing prostate cancer increases. This suggests that external factors like environment and lifestyle can change a man’s level of risk of developing prostate cancer.

Nutrition Enjoy a wide variety of foods from the five food groups every day. Healthy eating is easy! For more information visit: www.eatforhealth.gov.au

08 | UNDERSTANDING PROSTATE CANCER REDUCING THE RISK OF DEVELOPING PROSTATE CANCER Prostate cancer isn’t preventable but there are things that you can do that may reduce the risk. These are called protective factors. Unlike other types of cancer that have clear protective factors (for example, not smoking to prevent lung cancer), there is no Exercise Physical exercise improves overall evidence to show that there are clear protective factors for prostate health and wellbeing, which may help cancer. However, there is evidence suggesting that there are things reduce your risk of prostate cancer. that can be done to improve overall health and therefore possibly reduce the risk of prostate cancer. Some examples of protective factors include the following. Diet There is no evidence to suggest that there is an ideal diet for reducing prostate cancer risk. However, eating more fruit and vegetables and less meat may be important, and this approach is part of looking after your health. In general, the Australian Dietary Guidelines suggest: — eat plenty of vegetables, legumes/beans and fruit — eat wholegrain (cereal) food such as bread, pasta, rice, noodles — eat lean meat, fish and poultry as well as other protein sources such as tofu – include milk, yoghurt and cheese (reduced or low fat) — drink plenty of water — limit saturated fat such as in biscuits, cakes, pies and processed meats — limit added salt — limit added sugars such as confectionery, sugar-sweetened soft drinks — limit alcohol. The Australian Guide to Healthy Eating diagram on the next page shows the types of food and portions recommended. Physical activity There is evidence to show that regular physical activity and exercise can be protective factors for prostate cancer and improve overall health.

Prostate cancer isn’t preventable but there are things that you can do that may reduce the risk. These are called protective factors.

UNDERSTANDING PROSTATE CANCER | 09 Australian Guide to Healthy Eating Enjoy a wide variety of nutritious foods from these ﬁve food groups every day. Drink plenty of water. Vegetables and legumes/beans

Grain (cereal) foods, mostly wholegrain and/or high cereal ﬁbre varieties Muesli

Polenta

Quinoa

Fettuccine Penne Red kidney beans

Wheat flakes Red lentils Chickpeas

Red kidney beans Lentils

Mixed nuts Chickpeas

Fruit

Lean meats and poultry, ﬁsh, eggs, tofu, nuts and seeds and legumes/beans

Milk, yoghurt, cheese and/or alternatives, mostly reduced fat

Use small amounts Only sometimes and in small amounts HOW IS PROSTATE CANCER DETECTED AND DIAGNOSED? GETTING TESTED PCFA advises men over 50, Detection or over 40 and with a family A blood test and physical examination are usually the first step history of prostate cancer, a doctor will take to check the health of your prostate gland and for to talk to their doctor about possible prostate cancer. testing for prostate cancer using the PSA test and Doctors are required to inform you and get your permission before DRE as part of their annual they do any testing. Make sure you understand the tests before health check-up. You should agreeing to them because the test results can lead to actions that make an individual informed may be life-changing. decision about testing based on the latest available — Blood test (prostate specific antigen (PSA) test): PSA is evidence on the benefits and a protein that is made in the prostate gland and can be found in potential harms of testing and the blood. The result from the PSA test shows whether or not there subsequent treatment for is an increased amount of this protein in your blood. Depending prostate cancer. on the result, you may need further investigation by a specialist. A high PSA result does not always mean you have cancer. Prostatic diseases such as prostatitis can also cause a higher than normal PSA result. — Physical examination (digital rectal examination): The prostate gland is located in front of the rectum. One way of checking the health of the prostate gland is for the doctor to insert a gloved, lubricated finger through the anus and into the rectum to check the size and texture of the prostate and feel if there are any abnormalities. This is called a digital rectal examination (DRE). A normal DRE exam does not rule out prostate cancer, but it is an important part of the assessment. The DRE is usually done in combination with a PSA test. Depending on the results of the PSA test and DRE, your doctor may request repeat tests and refer you to a urologist, a doctor who specialises in the urinary and reproductive area. Diagnosis After doing these tests, and depending on the results, a biopsy may be done. This is the only way a firm diagnosis of prostate cancer can be made. The urologist removes small samples of tissue from your prostate using a very thin, hollow needle, guided Biopsy needle by an ultrasound. The prostate gland is either accessed through the rectum (transrectal) or the perineum (transperineal), which is the area Needle guide between the anus and scrotum. A biopsy is usually done as an outpatient procedure and the doctor will likely advise a short course of antibiotics starting just before the biopsy and continuing afterwards to reduce the chance of infection. The tissue is sent to a pathologist to identify whether the cells are Ultrasound probe malignant (cancerous) or benign (non-cancerous). For more information about the diagnosis and treatment of prostate cancer, please see the series of booklets on localised prostate cancer available through PCFA (www.pcfa.org.au).

LEFT: HEALTHY EATING Australian Dietary Guidelines National Health and Medical Research Council (2013) Australian Dietary Guidelines. Australian Guide to Healthy Eating. Canberra: National Health and Medical Research Council. UNDERSTANDING PROSTATE CANCER | 11 I was doing a regular health check and my doctor said, ‘oh, we’ll toss in a PSA test’… I had no idea what he was talking about. • • •

12 | UNDERSTANDING PROSTATE CANCER QUESTIONS TO ASK YOUR DOCTOR MEDICARE COVER Medicare covers some of the To gain a better understanding of your prostate gland, it is important costs of procedures and tests to talk to your doctor. As well as the information contained in used to diagnose prostate this booklet, the following questions will help you discuss your cancer, but there may be personal needs and what you may need to do. These are not the some out-of-pocket costs. only questions to ask, but they may help you think of others that are The doctor can answer your relevant to you. questions about why certain procedures and tests are — Members of my family have had prostate cancer. Given my age, needed and how much they should I be tested? will cost. You can prepare by — What are the tests you are going to do? being informed of the potential financial outlay. — Why these ones? If you see a doctor often — How reliable are the tests? and have to have tests done regularly, the Medicare Safety — What are the costs of doing the tests? Net (MSN) can help with the — What do I need to do before doing the tests? Is there anything costs. After you reach the I shouldn’t do? relevant threshold, the MSN can provide an additional — How long do I have to wait for my results? benefit for services covered — What do the test results tell me? by the Medical Benefits Schedule (MBS), in addition — What are the consequences of a positive test? to the standard Medicare — Do I need to have more tests? benefit. See Medicare Safety Net — When should I have my next prostate check? www.humanservices.gov.au/ — Do I need to see a specialist? What will that cost? customer/services/medicare/ medicare-safety-net for more — Are there any diet or lifestyle changes I should make? information. — Are there information materials (printed or websites) you would recommend for me to read? — If I have prostate cancer, what are the treatment options? — Do I have to start treatment straight away or can I wait?

SHOULD I TALK WITH OTHERS ABOUT MY PROSTATE HEALTH? Agreeing to be tested for prostate cancer is an important decision because the test result can be life-changing. If you have concerns about your prostate gland or testing for prostate BEFORE TESTING cancer, talking with others about these concerns can be useful. Ejaculation can cause an If you have a partner, talking with them can help you work out what increase in PSA in the blood. you may need to do. It is recommended that men do not ejaculate for 48 hours You can learn a lot from talking with people who have gone through before a PSA test to make a similar situation. If you have a male relative or friend who has been sure the result is accurate. tested for or who has had prostate cancer, it may help to chat to him Also, manipulation of the if he’s willing. However, it’s also important to remember that every prostate through a DRE, situation is different, so what he experienced may not be what you’ll or other forms of prostate experience. stimulation during sex, can cause the PSA to rise. These If you are uncomfortable talking to someone you know, there are activities should be avoided organisations that can give you more information. Some of these before a PSA test. organisations are listed in the following section.

UNDERSTANDING PROSTATE CANCER | 13 WHERE CAN I GET MORE INFORMATION? FURTHER READING Cancer Council Australia. Listed below are some of the leading organisations and services (2010). Localised prostate that can provide you with accurate information and support about cancer – a guide for men prostate cancer. and their families. Prostate Cancer Foundation of Australia (PCFA) You can get a free copy Telephone: (02) 9438 7000 or 1800 220 099 (freecall) of this book by contacting PCFA on: (02) 9438 7000 [email protected] or 1800 220 099 (freecall) www.pcfa.org.au (PCFA state offices are listed on the website) [email protected] Cancer Australia www.pcfa.org.au www.canceraustralia.gov.au Chambers, S. (2013). Cancer Council Australia Facing the Tiger – A Guide www.cancer.org.au for Men with Prostate Cancer and the People who Love Cancer Council Helpline Them. Toowong: Australian Telephone: 13 11 20 Academic Press Andrology Australia Telephone: 1300 303 878 [email protected] www.andrologyaustralia.org Cancer Councils: Cancer Council ACT Cancer Council NT Telephone: (02) 6257 9999 Telephone: (08) 8927 4888 [email protected] [email protected] www.actcancer.org www.cancercouncilnt.com.au Cancer Council SA Cancer Council VIC Telephone: (08) 8291 4111 Telephone: (03) 9514 6100 [email protected] [email protected] www.cancersa.org.au www.cancervic.org.au Cancer Council NSW Cancer Council QLD Telephone: (02) 9334 1900 Telephone: (07) 3634 5100 [email protected] [email protected] www.cancercouncil.com.au www.cancerqld.org.au Cancer Council TAS Cancer Council WA Telephone: (03) 6212 5700 Telephone: (08) 9212 4333 [email protected] [email protected] www.cancertas.org.au www.cancerwa.asn.au

Agreeing to be tested for prostate cancer is an important decision because the test result can be life-changing.

14 | UNDERSTANDING PROSTATE CANCER GLOSSARY The words listed below are used in this booklet, and you are likely to hear them used by health care professionals.

Biopsy The removal of a small amount of tissue from the body, for examination under a microscope, to help diagnose a disease.

Cancer A term for diseases in which abnormal cells divide without control. Cells The building blocks of the body. Unless they are abnormal or damaged, as cancer cells are, cells can reproduce themselves exactly.

Diagnosis The identification and naming of a person’s disease. Digital rectal An examination of the prostate gland through the wall of the examination (DRE) rectum. Your doctor will insert a gloved finger into the rectum and is able to feel the shape of the prostate gland. Irregularities in its shape and size may be caused by cancer.

Hormone A substance that affects how your body works. Some hormones control growth, others control reproduction. They are distributed around the body through the bloodstream.

Lymph nodes Also called lymph glands. Small, bean-shaped collections of lymph cells are scattered across the lymphatic system. They get rid of bacteria and other harmful things. There are lymph nodes in the neck, armpit, groin and abdomen.

Metastasis The cancer has spread away from the place where it began. Perineal (perineum) The area between the anus and the scrotum. Prognosis The likely outcome of a person’s disease.

Prostate cancer Cancer of the prostate gland, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production.

Prostate gland The prostate gland is located between the bladder and the penis and sits in front of the rectum. It produces fluid that forms part of semen.

Prostate specific antigen A protein produced by cells in the prostate gland, which may be (PSA) found in the blood in higher than normal amounts when prostate cancer is present.

Stage The extent of a cancer and whether the disease has spread from its original site to other parts of the body.

Staging Tests to find out, and also a way to describe, how far a cancer has spread. Frequently these are based on the tumour, the lymph nodes and the presence of distant metastases. Staging may be based on clinical or pathological features.

Testicles Organs that produce sperm and the male hormone testosterone. They are found in the scrotum.

Testosterone The major male hormone which is produced by the testicles. Tumour An abnormal growth of tissue. It may be localised (benign) or invade adjacent tissues (malignant) or distant tissues (metastatic).

Urethra The tube that carries urine from the bladder and semen out through the penis and to the outside of the body.

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16 | UNDERSTANDING PROSTATE CANCER Prostate Cancer Foundation of Australia (PCFA) is a broad-based community organisation and the peak national body for prostate cancer in Australia. We are dedicated to reducing the impact of prostate cancer on Australian men, their partners, families and the wider community. We do this by: — Promoting and funding world leading, innovative research in prostate cancer — Implementing awareness campaigns and education programs for the Australian community, health professionals and Government — Supporting men and their families affected by prostate cancer, through evidence-based information and resources, support groups and Prostate Cancer Specialist Nurses. pcfa.org.au