Ambassador Speaker Notes_Treatment Options and Challenges

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AMBASSADOR PRESENTATION

Treatment Challenges and Options SPEAKER NOTES March 2013


Ambassador Presentation: Treatment Options and Challenges

Overview of presentation The Treatment Options and Challenges presentation provides audiences with an overview of prostate issues, including explanation of what and where the prostate gland is as well as health concerns such as prostatitis, enlarged prostate problems and prostate cancer. It also introduces the notion of prostate cancer testing (in the form of the Prostate Specific Antigen [PSA] blood test and Digital Rectal Examination [DRE]) and aims to demystify these procedures. This is similar to the standard presentation – Prevention and Early Detection in Prostate Cancer The presentation also provides some basic information pertaining to prostate cancer grade and staging and provides an overview of various treatment options and possible side effects. It DOES NOT make recommendations in regard to treatment options. Instead the presentation is designed to inform the audience about the importance of shared decisionmaking – between the person diagnosed, their family and partners and their health care team. Treatment Options and Challenges 03_2013

An introduction to the services of PCFA is outlined, directing people where to go for further information in the form of resources or supportive care services – as per the standard presentation: Prevention and Early Detection in Prostate Cancer. Intended audience The Treatment Options and Challenges presentation is suitable for audiences where a diagnosis of prostate cancer has been made. It is suitable for presentation to patients, and carers, partners, family members and friends of men who have been diagnosed, of any age. Aim of presentation The aim of the Treatment Options and Challenges presentation is to provide an overview of prostate cancer issues, to provide a brief overview of various treatment options and possible side-effects, and to provide information pertaining to the decision making process. It also aims to inform the community about PCFA. The information provided is evidence-based and referenced.

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Ambassador Presentation: Treatment Options and Challenges

2. Why did you decide to become an Ambassador?

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Ambassador Program Presentation Treatment Options and Challenges PROSTATE CANCER

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You should take a few minutes before you begin the ‘official’ presentation to introduce yourself to your audience. Try to keep your introduction to 2-3 minutes. Some questions that may help you focus your introduction 1. What aspect of your prostate cancer journey (or someone you know) do you think is important for the community to know? (Identify the main challenge and the main positive in this.)

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Ambassador Presentation: Treatment Options and Challenges

NO SLIDE – ACKNOWLEDGEMENT OF COUNTRY (OPTIONAL) An Acknowledgement of Country is a way of showing awareness of and respect for the traditional Aboriginal or Torres Strait Islander owners of the land on which a meeting or event is being held, and of recognising the continuing connection of Aboriginal and Torres Strait Islander peoples to their Country. At a meeting, speech or formal occasion the speaker can begin their proceedings by offering an Acknowledgement of Country.

Prostate Cancer Foundation of Australia respects and acknowledges the traditional custodians of the land, elders past and present, on which this meeting takes place.

continuing relationship between Indigenous peoples and their Country. Incorporating welcoming and acknowledgement protocols into official meetings and events recognises Aboriginal and Torres Strait Islander peoples as the First Australians and custodians of their land. It promotes an awareness of the past and ongoing connection to place of Aboriginal and Torres Strait Islander Australians. Acknowledgement of Country is recommended by federal and state government departments. Source: Reconciliation Australia http://reconciliation.org.au/home/resources/fact sheets/q-a-factsheets/welcome-to-andacknowledgement-of-country

An Acknowledgment of Country can be informal or formal and involves visitors acknowledging the Aboriginal or Torres Strait Islander owners of the land as well as the long and Treatment Options and Challenges 03_2013

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Ambassador Presentation: Treatment Options and Challenges

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All good presentations outline what topics will be covered and in what order they will be presented. This provides some direction and focus for the audience when they are listening to you present the information.

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Ambassador Presentation: Treatment Options and Challenges

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Before starting your presentation it is a good idea to assess your audience’s knowledge. One way of doing this is through a series of true/false questions. This also helps to engage the audience in the information you will be presenting. Here are 10 myths about prostate cancer that you can use. Choose 3-4. 1. Prostate Cancer is common, but few men actually die from it (true or false?)  Around 9 men die each day of Prostate Cancer in Australia.  The good news, however, is that if detected early, more choices are available for any treatments you may need. 2. Prostate cancer is an old man’s disease (true or false?)   Treatment Options and Challenges 03_2013

While it is true that prostate cancer is more common with increasing age, it can be found in men of all ages. Prostate cancer is increasingly being diagnosed in men under the age of 40.

3. If you don’t have any symptoms, then you don’t have prostate cancer (true or false?)  Today, because of the availability of the blood test (Prostate Specific Antigen or PSA test), and physical examination (Digital Rectal Examination) many men are diagnosed with prostate issues some of which are cancer before they have had any symptoms.  Urinary symptoms like hesitancy, frequency, or dribbling are important and could mean a problem with your prostate. However, not having these symptoms does not rule out prostate cancer. 4. If prostate cancer doesn’t run in my family, I won’t get it (true or false?)  While a family history of prostate cancer doubles a man’s odds of being diagnosed, the fact remains that 1 out of 7 Australian men will be diagnosed with prostate cancer by age 75, and 1 in 4 by age 85. 5. The Prostate Specific Antigen blood (PSA) test is a cancer test (true or false?)  The PSA tests measures levels of prostate-specific antigen in the bloodstream, it highlights many health issues related to the prostate. PSA is increased in the bloodstream in response to a number of problems which Page|5


Ambassador Presentation: Treatment Options and Challenges

could be present in the prostate including an inflammation or infection (prostatitis), enlargement of the prostate gland (benign prostatic hyperplasia) or, possibly, cancer. 6. A high PSA level means that you have prostate cancer and a low PSA means you don’t (true or false?)  Although prostate cancer is a common cause of elevated PSA levels, some men with prostate cancer may even have low levels of PSA.  Factors such as being overweight can impact on levels.  Again, elevated levels can be an indication of other medical conditions. 7. Vasectomies cause prostate cancer (true or false?)  Having a vasectomy was once thought to increase a man’s risk, but recent research suggests that this is NOT the case.  Vasectomy may however lead to a man getting his prostate checked more often and prostate cancer is subsequently detected more often in men who have had vasectomies. 8. Do all prostate cancers need to be aggressively treated (true or false?) In a large European study up to 42% of the cancers detected were low volume, low risk cancers suitable for surveillance.

true that all men experience complications. These side effects can also be highly dependent on age and physical condition. Numerous therapies and aids can improve erectile function and limit incontinence following treatment and nerve sparing surgical procedures have improved outcomes for patients as well.

10. Sexual activity increases the risk of developing prostate cancer (true or false?)  High levels of sexual activity or frequent ejaculation were once rumoured to increase prostate cancer risk.  In fact, some studies show that men who reported more frequent ejaculations had a lower risk of developing prostate cancer.  Ejaculation itself has not been linked to prostate cancer. 11. You can pass your cancer to others (true or false?)  Prostate cancer is not infectious or communicable.  This means that there is no way for you to “pass it on” to someone else. Sources: Prostate Cancer Foundation http://www.pcf.org/site/c.leJRIROrEpH/b.7425707/k.7A02/ 10_Myths_and_Misconceptions_About_Prostate_Cancer.h tm About.com http://prostatecancer.about.com/od/prostatecancer101/a/t optenmyths.htm

9. Treatment for prostate cancer causes impotence or incontinence (true or false?)  While erectile dysfunction (ED) and urinary incontinence are possibilities following surgery or radiation therapy for prostate cancer, it is not

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PCFA formed in 1996 and has grown into the peak National body for prostate cancer in Australia. It is a registered charity. PCFA’s aim is to reduce the impact of prostate cancer on Australian men, their partners, families, friends and the wider community.

aware of signs that something may be wrong, and to encourage everyone to seek medical advice sooner rather than later  Supporting men and their families through: information resources (such as factsheets, brochures, books and DVDs): support group networks (there are around 130 prostate cancer support groups around Australia and this number is constantly growing): and through the Prostate Cancer Specialist Nurses program (currently there are 14 hospitals involved in this program). Source: PCFA http://www.prostate.org.au

PCFA does this through:  Promoting and funding research: In partnership with Movember between 2007 2012 the research program has awarded more than $30 million to over 135 research projects across Australia  Implementing awareness campaigns and educational programs, like the Ambassador Program. The aim of this program is to get men talking about their health, to become Treatment Options and Challenges 03_2013

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The prostate is one of the organs forming part of the male reproductive system. All male babies have a prostate. The prostate is not removed even if a person has a sex change operation.

It is shaped like a doughnut and it surrounds the beginning of the urethra. Urine passes through the urethra on its way from the bladder to the penis. The nerves that control erections surround the prostate. The growth of the prostate relies on testosterone (male sex hormone). If the prostate grows too large, it can slow or stop the flow of urine. As the prostate is located near the back passage (the rectum) growth of the prostate can be checked by a rectal examination. Source: PCFA http://www.prostate.org.au Andrology Australia,http://www. andrologyaustralia.org

The prostate is located immediately below the bladder and just in front of the bowel. Its main function is to produce fluid which protects and enriches sperm. It secretes a slightly acidic fluid, milky or white in appearance that usually constitutes 20–30% of the volume of the semen along with sperm and seminal vesicle fluid. A healthy human prostate is classically said to be slightly larger than a walnut. The mean weight of the "normal" prostate in adult males is about 11 grams, usually ranging between 7 and 16 grams. Treatment Options and Challenges 03_2013

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Benign Prostatic Hyperplasia (BPH) or Benign Prostatic Enlargement (BPE)

Benign prostatic hyperplasia is noncancerous enlargement of the prostate gland. BPH generally begins in a man's 30s, develops slowly, and most commonly only causes symptoms after 50. Though the prostate continues to grow during most of a man's life, the enlargement doesn't usually cause problems until late in life. Prostatitis

Prostatitis is a condition that involves inflammation of the prostate and sometimes the area around it. There are several types of prostatitis, each with a range of symptoms. The disease can be due to either a bacterial or nonbacterial infection. Some men with the disease will experience severe pain and others will not be bothered; and the rest fall in between the two. However, the symptoms of the disease do have a significant impact on a man’s quality of life. Prostatitis can affect men at any age and it is thought that 1 in every 6 men experience this disorder at some stage during their lives. [1] Sources: 1. Blandy, J (1998), “Urology” 5th Edition. Blackwell Science, Oxford.

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BPH rarely causes symptoms before age 40, but more than half of men in their sixties and as many as 90% in their 70s and 80s have some symptoms of BPH. In BPH, the prostate gland grows in size. It may compress the urethra which goes through the centre of the prostate. This can impede the flow of urine from the bladder through the urethra to the outside. It can cause urine to back up in the bladder (retention) leading to the need to urinate frequently during the day and night. Other common symptoms include a slow flow of urine, the need to urinate urgently and difficulty starting the urinary stream. More serious problems include urinary tract infections and complete blockage of the urethra, which may be a medical emergency and can lead injury to the kidneys. Page|9


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Sources: Urological Society of Australia and New Zealand http://www.usanz.org.au/benign-prostatichyperplasia-bph/

Lower Urinary Tract Symptoms:

Lower urinary tract symptoms are  Storage  Voiding  post urination symptoms affecting the lower urinary tract. LUTS can significantly reduce men's quality of life, and may point to other problems associated with the urogenital tract.[1] Symptoms are often nonspecific and large studies of patients have failed to show any correlation between LUTS and a specific diagnosis.[2] LUTS are common and not necessarily a reason for suspecting prostate cancer.

Prostate cancer

Prostate cancer develops when the cells in the prostate gland grow more quickly than in a normal prostate, forming a malignant (cancerous) tumour. Most prostate cancers grow slower than other types of cancer. Early (or localised) prostate cancer means cancer cells have grown, but they have not spread beyond the prostate. Some prostate cancers may spread to other parts of the body, such as the bones and lymph nodes. This is called advanced prostate cancer. Sources: Cancer Council NSW http://www.cancercouncil.com.au/wpcontent/uploads/2011/07/Understanding-ProstateCancer-low-res.pdf PCFA http://www.prostate.org.au

LUTS are particularly common in older men. It has been reported that 90% of men aged 50 to 80 years suffer from potentially troublesome LUTS [1]. Older men have a higher incidence of LUTS than older women [4].

Sources: 1. Lower urinary tract symptoms, NICE Clinical Guideline (May 2010); The management of lower urinary tract symptoms in men 2. Abrams P; New words for old: lower urinary tract symptoms for "prostatism". BMJ. 1994 Apr 9;308(6934):929-30. 4. Boyle P, Robertson C, Mazzetta C, et al; The prevalence of lower urinary tract symptoms in men and women in four centres. The UrEpik study. BJU Int. 2003 Sep;92(4):409-14. [abstract]

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It is important to note that these symptoms are not always signs of prostate cancer. They can be symptoms of other common and non-life threatening prostate disorders. Men who experience these symptoms should see their doctor immediately, to determine the cause and best treatment. Source: Cancer Council Victoria www.betterhealth.vic.gov.au Fact Sheet Prostate cancer

Men may experience some, all or none: • Waking frequently at night to urinate • Sudden or urgent need to urinate • Difficulty in starting to urinate , slow flow of urine and/or difficulty in stopping • Discomfort when urinating • Painful ejaculation • Blood in the urine or semen • Decrease in libido (sex urge) • Reduced ability to get an erection

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Prostate cancer is an abnormal growth of cells in the prostate that form a lump (tumour). Most prostate cancers grow slower than other types of cancer. Early (or localised) prostate cancer means cancer cells have grown, but they have not spread beyond the prostate. Prostate cancer cells – if not detected - may break out of the prostate and invade distant parts of the body, particularly the bones and lymph nodes, producing secondary tumours, a process known as metastasis. This is advanced prostate cancer. Sources: Cancer Council NSW http://www.cancercouncil.com.au/wpcontent/uploads/2011/07/UnderstandingProstate-Cancer-low-res.pdf PCFA http://www.prostate.org.au

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Around 85% of all men diagnosed will be alive 5 years after diagnosis. For patients who have localised disease, around 93% will live beyond five years. In the decade 2001-2011 around 7.75 million men underwent a PSA test

1 in 7 men will be diagnosed by age 75. 1 in 4 men will be diagnosed by age 85.

Sources: Australian Institute of Health and Welfare (AIHW). ACIM (Australian Cancer Incidence and Mortality) Books. AIHW: Canberra. Australian Institute of Health and Welfare 2012. Cancer incidence projections: Australia, 2011 to 2020. Cancer Series no. 66. Cat. No. CAN 62. Canberra: AIHW.

Prostate cancer is the most common cancer in males – around 57 men are diagnosed each day (that’s more than 20,000 each year). Prostate cancer is the most prevalent of any cancer type (more prevalent than breast cancer in women). Prevalence means that in the past 5 years, more men have been diagnosed with prostate cancer than any other cancer (across men and women). Prostate cancer is the second most common cause of cancer deaths in Australian men – around 9 men die each day from the disease Treatment Options and Challenges 03_2013

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The risk of prostate cancer rises with age, increasing rapidly over 50 years. Family history increases the chances of developing the disease. Men with a first-degree relative with prostate cancer are three times as likely to develop the disease. Men of African descent are at higher risk than men of European descent. Sources: Cancer Council Australia http://www.cancer.org.au/about-cancer/typesof-cancer/prostate-cancer.html

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prostate cancer is present. Where cancer is present, the PSA can predict the volume of disease. Where the PSA is less than 10, the cancer is commonly confined to the prostate. If the PSA is above 30, it is very likely the cancer has spread beyond the prostate and is therefore less likely to be curable.

Prostate Specific Antigen Blood Test (PSA) This blood test is not just a test for prostate cancer. It may indicate some form of prostate disease, like the ones we looked at before (prostatitis, BPH) The PSA test looks for the presence (in the blood) of a protein that is produced specifically by prostate cells. The presence of an elevated PSA does not necessarily mean prostate cancer is present as there are other medical conditions that can lead to a PSA result outside the normal range. The result of a PSA test needs expert evaluation by an experienced doctor.

If your test reveals a slightly elevated PSA, your doctor may recommend the test be repeated from time to time to establish the rate of change, if any, before recommending a biopsy. Source: PCFA http://www.prostate.org.au

The Digital Rectal Examination (DRE) – a Physical Examination The DRE is a physical examination that lets a doctor feel part of the surface of the prostate. Irregularities include swelling or hardening of the prostate, or lumps on the surface that may indicate development of a tumour, or other problems. The drawback to this test is that the doctor can feel only part of the prostate, so may miss irregularities beyond reach.

As a general rule, the higher the PSA result the greater the chance that Treatment Options and Challenges 03_2013

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Recent studies conducted by PCFA found that 94% of men found the procedure to be painless (less than 6% of men who had had a DRE found the procedure painful or embarrassing).

You might like to share part of your story here. What was your experience with these tests?

A combination of both the PSA blood test and the physical examination is recommended. These tests should be considered as part of a general male health check annually from 50 years of age or 40 if there is a family history of prostate cancer.

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What have other men told you about their experiences?

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Computerised Tomography (CT) scans. Source: PCFA http://www.prostate.org.au

If your PSA test and/or physical exam come back as abnormal, you may be referred to an urologist. Urology is a medical speciality that focuses on the urinary tracts of males and females, and the reproductive system in males. The urologist may want to do a biopsy – A biopsy is when small samples of prostate tissue are taken and then examined under a microscope by a pathologist to see if cancer cells are present. If it is cancerous, a biopsy gives information about the: 1. type 2. grade and 3. stage If cancer is detected further assessments will be made. These may include bone scans, Magnetic Resonance Imaging (MRI) or Treatment Options and Challenges 03_2013

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Cancer stage – Stage is a term used to describe  Its size  Whether it has spread beyond its original area of the body. Again there are different types of staging scales, but generally they go from T1 – T4. T1 and T2 tumours are classified as localised prostate cancers.

If it is cancer, there will be a number of different options available. These options depend on: the type, stage and grade of prostate cancer diagnosed. Cancer grade - The grade gives an idea of how quickly the cancer may develop. There are several grading systems, but the Gleason system is the most commonly used. Low-grade cancers are usually slow-growing and less likely to spread. High-grade tumours are likely to grow more quickly and are more likely to spread.

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T3 and T4 tumours mean that the cancer has spread beyond the prostate gland into the surrounding tissues. They are known as locallyadvanced prostate cancer. If the cancer has spread to other parts of the body this is known as  Metastatic  secondary, or  advanced prostate cancer. Sources: Macmillan Cancer Support http://www.macmillan.org.uk/Cancerinformation/Can certypes/Prostate/Symptomsdiagnosis/Gradingstagi ng.aspx

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talking to you about various treatment pathways. Source: Based on source information from the U.S National Institutes of Health

Certain factors affect prognosis (chance of recovery) and treatment options. The prognosis and treatment options depend on the following:  The stage of the cancer (whether it affects part of the prostate, involves the whole prostate, or has spread to other places in the body).  The patient's age and health (whether there are other existing health problems for example)  Whether the cancer has just been diagnosed or has recurred (come back).  Prognosis also depends on the Gleason score and the level of PSA. Your health care team will take all these factors into consideration when Treatment Options and Challenges 03_2013

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 Repeated PSA blood tests /or digital rectal examinations (DRE) and/or biopsies2  A repeat regime determined by doctor and/or specialist.

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Active surveillance/Watchful waiting These terms have often been used interchangeably in the past and this causes confusion as they are different approaches used for different reasons. Active surveillance The purpose of active surveillance is to identify whether there are any rapid or ongoing changes to the cancer. This helps your doctor/specialist to identify what other interventions you may need right now to assist a cure. 1 Active surveillance involves:  Careful monitoring of the cancer

This option is often chosen when there are:  Low disease risks i.e. cancer is low grade, low volume  Personal reasons an individual/couple choose to monitor  Options to delay other therapies  Reasons to delay any risk of complications Some medical practitioners are concerned constant monitoring may lead to over servicing; others are concerned at potential risks and complications with repeated biopsies. Watchful waiting This approach is ‘waiting to see what happens’. It generally involves:  No extensive monitoring of the disease  If symptoms do occur they are managed rather than treated for a cure.

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Novakovic, K. Active Surveillance NorthShore Active Surveillance Program 1

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This option is often chosen when there is:  Low risk disease  The person is elderly and not at risk of dying specifically from prostate cancer  Other medical conditions such as heart disease; lung disease; or stroke  A need to observe prior to using hormone treatments to control the disease. Surgery  Surgical removal of the whole prostate is called radical prostatectomy. After the prostate and seminal vesicles are removed the bladder is reattached to the urethra. Other tissue around the prostate might also be removed and checked for cancer (e.g. the lymph nodes). Nerves that men need to get an erection are also next to the prostate gland – and these can be damaged during surgery.

Radiotherapy  Radiotherapy uses radiation, such as x-rays, gamma rays, electron beams or protons, to kill or damage cancer cells and stop them from growing and Treatment Options and Challenges 03_2013

multiplying. Radiotherapy damages cancer cells in the area being treated. Although the radiation can also damage normal cells, they can usually repair themselves.  There are different types of radiation therapy available for prostate cancer o External beam radiation: radiation from a machine is used to target the prostate gland. Treatment usually lasts for a few minutes each day for 6-8 weeks. o Brachytherapy (or seed radiation): uses multiple needles to insert small seeds of radiation into the cancer in the prostate gland and release radiation over time. o There are several side effects associated with radiation therapy including: fatigue, dry skin, loss of appetite, hair loss, nausea, diarrhoea, fertility issues. Sources: PCFA http://www.prostate.org.au Agency for Healthcare Research and Quality (AHRQ). Treating Prostate Cancer Cancer Council : http://www.cancercouncil.com.au/wpcontent/uploads/2012/04/CAN730Radio_VIC_Booklet_LR.pdf

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Hormone therapy/ Androgen Deprivation Therapy (ADT)  The male hormone testosterone, produced by the testicles, is closely involved in stimulating the cancer’s growth and spread.  Products are available that can be taken in the form of tablets or injections to suppress testosterone and this is known as hormone therapy.  Hormone therapy is often used to shrink the prostate and the tumour before commencing radiotherapy Chemotherapy  Chemotherapy is the use of drugs to kill or slow the growth of cancer cells.  Most chemotherapy drugs enter the bloodstream and travel throughout the body to reach cancer cells in different organs and tissues. Chemotherapy drugs target and injure rapidly dividing cells, but because it is not cancer specific, both cancer cells and some normal cells are affected. When normal cells are damaged, this can cause side effects (such as fatigue, loss of appetite, nausea and vomiting, bowel problem, memory and concentration problems) Treatment Options and Challenges 03_2013

Immunotherapy  Immunotherapy is also sometimes called biologic therapy or biotherapy. It is treatment that uses certain parts of the immune system to fight diseases such as cancer. This can be done in a couple of ways: o Stimulating your own immune system to work harder or smarter to attack cancer cells o Giving you immune system components, such as man-made immune system proteins Sources: PCFA http://www.prostate.org.au Agency for Healthcare Research and Quality (AHRQ). Treating Prostate Cancer Cancer Council : http://www.cancercouncil.com.au/wpcontent/uploads/2012/04/CAN730Radio_VIC_Booklet_LR.pdf

American Cancer Society http://www.cancer.org/Treatment/Treatmentsan dSideEffects/TreatmentTypes/Immunotherapy/im munotherapy-what-is-immunotherapy

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Depression and anxiety The word ‘depression’ is often thought to mean sadness or a low mood. However, depression is more than just a low mood – it’s a serious illness for which effective treatments are available. Having a depressed mood can extend beyond the issue of cancer and into all areas of a person’s life. Men with depression find it hard to carry out their normal daily activities. An anxiety disorder is more than just feeling stressed – it can be a serious illness. People with anxiety disorders find it hard to function every day. There are many types of anxiety disorders, each with a range of symptoms. A number of different factors surrounding diagnosis, treatment and remission of prostate cancer may contribute to the development of an anxiety disorder in men and their partners. Treatment Options and Challenges 03_2013

Depression and anxiety are common in men diagnosed with prostate cancer and their partners/carers. You should speak to your health care team about ways to deal with either of these issues. Erectile dysfunction ED Means not being able to keep an erection for intercourse. There are several possible ways to treat ED. these may include: oral medications, injections, penile rings and vacuum pumps, and penile implants. It is important to discuss these with your health care team. Urinary problems This refers to leaking or dribbling urine, or not being able to hold your urine at all sometimes. Incontinence can be improved/controlled with pelvic floor exercises. There are a range of incontinence pads available to help men manage. Bowel problems These may include: Very loose or runny stools, feeling of pressure to have a bowel movement, burning, tenderness, or pain, gas, mucous discharge, bleeding. These problems may dissipate after treatment naturally on their own. You should speak to your health care team about ways to manage any bowel issues.

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NB: Surgical treatments are also available to manage many of the incontinence (urinary and bowel) issues after prostate cancer treatment. Sources: PCFA http://www.prostate.org.au beyondblue: Prostate cancer and the risk of depression/anxiety

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Deciding on treatment pathways should involve a discussion between you, significant others and your health care team. If you are feeling unsure about your options, check with your doctor how soon your treatment should start, and take as much time as you can before making a decision. Make sure you understand all the options available to you and their possible side effects. You will need to decide what side effects you are and are not willing to live with. All of this will help you make a well-informed decision. This decision will also take into account your personal values and the things that are important to you and your family. It is common to feel overwhelmed by information so it may help if you read and talk about the options gradually.  Weigh up the advantages and disadvantages of different Treatment Options and Challenges 03_2013

treatments, including the impact of any side effects.  If only one type of treatment is recommended, ask your doctor why other choices have not been offered.  If you have a partner, you may want to discuss the treatment options together. You can also talk to family and friends. You have the right to accept or refuse any treatment offered by your doctors and other health care professionals. Some people with advanced cancer choose treatment even if it only offers a small benefit for a short period of time. Others want to make sure the benefits outweigh the side effects so that they have the best possible quality of life. Some people choose options that focus on reducing symptoms and make them feel as well as possible. Getting a second opinion from another specialist may be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations and reassure you that you have explored all of your options. Your GP is able to arrange a second opinion and many are happy to do so. Many men find this a useful exercise and helps their decision making. Some people feel uncomfortable asking their doctor for a second P a g e | 25


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opinion, but specialists are used to people doing this Sources: Cancer Council NSW

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PCFA has a range of information available – from factsheets, to brochures to books and DVDs. If you would like more information, please go to the website or call the Freecall number. In addition, PCFA has a number of affiliated support groups across Australia. These are held face-to-face or sometimes over the phone. The support groups are a great way to meet other people who are in a similar situation. Some groups have guest speakers on a range of different topics, some groups are social – most groups are a combination of these two things.

affected by prostate cancer. A Prostate Cancer Specialist Nurse is an experienced registered nurse who has received additional training to make them an expert nurse in prostate cancer care. Prostate Specialist nurses will help men and their families navigate the prostate cancer journey, providing information and coordinating care. If you have used any of PCFAs resources or support services you include your experiences here.

Sources: PCFA http://www.prostate.org.au

PCFA also supports Prostate Specialist Nurses - There are lots of nurses throughout Australia working in a variety of jobs helping those Treatment Options and Challenges 03_2013

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Visit the PCFA website and click on the Support Groups tab along the upper row of options. Alternatively, call 1800 220 099 or email enquiries@pcfa.org.au If you have been to a support group you could include your experience here. What is it like? What do you do there? What do you get from it?

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Ambassador Presentation: Treatment Options and Challenges

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PCFA is a registered charity organisation and as such relies on donations from the community and corporate sector, and from fundraising events such as the Big Aussie Barbie and funding from Movember. There are several ways you can become involved:  Become a supporter  Make a donation  Hold your own fundraiser Sources: PCFA http://www.prostate.org.au

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Ambassador Presentation: Treatment Options and Challenges

SLIDE 21 PCFA Ambassador Program Treatment Options and Challenges in Prostate Cancer

Other Resources beyondblue: the national depression initiative beyondblue.org.au 1300 22 4636 Healthshare Australia’s interactive health network healthshare.com.au Continence Foundation of Australia continence.org.au 1800 33 00 66 MindHealthConnect mindhealthconnect.org.au This Way Up, online treatment, education and research in anxiety and depression thiswayup.org.au The Australian Guide to Healthy Eating health.gov.au Andrology Australia andrologyaustralia.org Urological Society of Australia & New Zealand usanz.org.au Š PCFA 2013

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Ambassador Presentation: Treatment Options and Challenges

Slide 22

Questions and comments from the audience

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