Introduction

This booklet is for younger men who have been diagnosed with prostate cancer. It contains information to help you understand side effects from prostate cancer treatments, and ways to manage them. It may also be helpful for your partner, family and friends. 

‘I’m 43 years old, I’ve got this sizeable mortgage, and I’ve got prostate cancer. The doctors can’t give me a timeframe because they can’t. What sort of advice should I get?’ 

All commonly–used prostate cancer treatments have some side effects. However, there is no way of knowing which side effects that you may have, or how severe they will be. It is important that you find out as much as you can about what side effects to expect before starting treatment, so that you can be better prepared and cope with them if they do appear. 

For some men, the impact of treatment side effects may be minimal or quickly resolved. For others, this impact can be more difficult, requiring further support and help. You can reduce the impact of side effects with self–management strategies such as changing your diet, exercising regularly, learning ways of looking after your health and wellbeing, and preparing yourself well for what side effects to expect so you’re in a better position to deal with them when they appear. Finding out as much as possible about potential side effects before you start treatment may also help you cope better. 

 

Your cancer journey

After being diagnosed with prostate cancer, it’s common for you to see a number of health professionals with different expertise who work together as a team, called a multidisciplinary team (also known as a healthcare team). Best practice treatment and supportive care for people with cancer involves a team of different health professionals. Each team member brings different skills that are important in managing care and in making decisions around your individual needs. The team includes health professionals who are involved in diagnosing your cancer, treating your cancer, managing symptoms and side effects, assisting you with your feelings or concerns during your cancer journey. 

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer. Depending on your stage of prostate cancer and other underlying conditions, your experience may be quite different. 

diagram 1

As the diagram Your cancer journey shows, it can be useful to think of the journey in stages that may include detection, diagnosis, treatment, follow–up care and survivorship. For some, it may include end of life care. Take each stage as it comes so you can break down what feels like an overwhelming situation into smaller, more manageable steps. 

Many people want to take an active part in making decisions about their care. Gaining information about prostate cancer and its treatment will help you make decisions. The aim of this booklet is to provide you with information about side effects from treatments for localised and locally advanced prostate cancer, ideas about how they could be managed, where to find more information and suggested organisations to support you on your cancer journey. The information contains in this booklet can also be used as a guide to further discussions with your doctor and healthcare team. Being informed enables you to participate in decisions about your care and leads to improved experiences and better care. 

  • Localised prostate cancer – this is where the cancer is only found in the prostate gland. Sometimes it is also known as early prostate cancer. 
  • Locally advanced prostate cancer – the cancer has extended beyond the prostate and may include seminal vesicles or other surrounding organs such as the bladder or rectum. 
  • Metastatic prostate cancer – the cancer has spread to distant parts of the body such as bone.

If you have been diagnosed with advanced prostate cancer, including locally advanced prostate cancer and metastatic prostate cancer, a series of free booklets on advanced prostate cancer is available through PCFA

What is a side effect?

‘There was no discussion on side effects …so I just went along with it.’

It is important not to confuse side effects with cancer symptoms. Side effects are unwanted and unpleasant symptoms or reactions caused by the treatment, and not by the disease itself. Because many medical treatments don’t just target the part of the body where they are needed, they often cause reactions in other parts of the body as well and these reactions can make you feel unwell. Two people using the same treatment can experience side effects differently. As part of your treatment decision making process, it is important for you to learn about possible side effects related to all the prostate cancer treatment options. By learning about the treatment side effects, you can weigh up the advantages and disadvantages of all the treatment options. 

Treatment can control or stop cancer growth and therefore also control the symptoms related to the cancer itself. Side effects can be managed through additional treatments, medicines or psychological interventions.

  • Some side effects are minor and can be managed, while others may be more severe.
  • Some side effects can be uncomfortable.
  • Some side effects can be serious health conditions that require more medical treatment.
  • Most side effects are reversible when treatments stop but some are permanent.
  • Some people don’t experience any side effects from treatments, while some people experience many.

Talk to members of your healthcare team (e.g. doctor, nurse) about side effects because there may be ways of managing them.

Treatment decision and side effects

In general, for treating localised or locally advanced prostate cancer, the common treatments are: surgery; radiotherapy; and hormone therapy. For more information about prostate cancer treatments, please read one of the booklets in this series: Treating prostate cancer in younger men.

For information about side effects of treatment for advanced prostate cancer, a series of free booklets on advanced prostate cancer is available through PCFA (www.pcfa.org.au).

Part of making the best treatment decision is to learn about the known side effects from the different treatment options. Even though not everyone will experience the side effects in the same way, it may be useful for you to know about them so you are prepared.

Listed below are some questions you may want to ask members of your healthcare team about treatment and side effects:

  • What are the treatment choices for my stage of prostate cancer?
  • What are the expected advantages of each treatment option?
  • What are the disadvantages and side effects of each treatment option?
  • How can the side effects be managed?
  • Will the side effects get better or worse as my treatment goes along?
  • What can I do before starting treatment to prepare for them or reduce their impact?
  • Are there things that I can do to help relieve the side effects?
  • Who should I see about side effects?
  • Will I need to change my normal activities? If so, for how long?

These are not the only questions to ask. There may be questions you have that are specific to your needs. The important thing to do is to always ask questions that can help you understand treatment and side effects better so you can make the best treatment decision for you.

The following is an overview of the possible side effects that you could have from treatments.

Surgery: What are the side effects and ways of managing them?

Surgery involves the removal of the entire prostate gland (the operation is called a radical prostatectomy). This treatment option is generally offered to men with localised prostate cancer, and in some instances, also to men with locally advanced prostate cancer. The side effects relate to physical changes to that area of your body after the prostate gland has been removed. Learning about the possible side effects from surgery is particularly important because some side effects can be permanent. The main side effects from surgery are included in the following pages.


‘He did actually explain about the incontinence but he didn’t explain very much about the pelvic floor muscle, or how to exercise it. And there was no mention of talking to a prostate nurse or a physiotherapist …’

Incontinence

The removal of the prostate gland may affect your ability to control the flow of urine from the bladder. This is because the urethra (the tube that urine passes through as it leaves the bladder) runs through the prostate gland. The control mechanisms for urinary control (the bladder neck and the urinary sphincter) are located very close to the prostate and can be affected during the surgery. When the urinary sphincter is affected, people can experience stress urinary incontinence – losing control of the bladder during physical activities (e.g. exercising) or strain (e.g. coughing, sneezing). All men will have a temporary urinary catheter for a short period after surgery. This is a thin, soft plastic tube that runs from inside the bladder to a bag outside of your body to collect the urine. Men normally need a catheter for a week after surgery, but sometimes up to three weeks. After the catheter is removed, it is not unusual to have some mild urinary incontinence. Improvement can occur quickly, but if you are still troubled by 6 months, then further treatments can help. Talk to members of your healthcare team who are supporting you if you are concerned.

 

Tips:

  • Talk to a continence nurse who can offer suggestions about the best continence products for your needs. The Continence Aids Payment Scheme (CAPS) may provide financial assistance for continence products.
  • Talk with a continence nurse or physiotherapist for information on pelvic floor muscles training. Pelvic floor muscles are important for continence control (see www.bladderbowel.gov.au/adults/pelvicmen.htm), and are best learned and started before surgery, and continued afterwards.

 

‘They did tell me that I’d possibly have a problem with erections after the operation …’

 

Erectile difficulties 

It is likely that you will have some difficulties getting and maintaining an erection after the surgery. How long this will last depends on a number of factors such as whether the erectile nerves were preserved at the time of surgery. The nerves that enable you to have an erection are on either side of the prostate. If cancer has not grown near the nerves, a nerve–sparing operation may be able to be performed when removing the prostate. This means the chance of you regaining the ability to have an erection naturally is increased. If these nerves are permanently damaged or removed, erectile difficulties may be ongoing. It is important that you know treatments are available that can help. Members of your healthcare team can provide you with information appropriate to your needs.

 

Tips:

  • Medications – Some medications in tablet and injectable forms can be prescribed to manage erectile difficulties. These medicines do have some side effects, and may not suit everyone. Tablet medications will only work if you have had nerve sparing surgery, but the injections can work even if the nerve has not been spared.
  • Implants/devices – If you don’t want to use medications, vacuum devices that draw blood into the penis (e.g. vacuum erection device) or the use of penile implants (e.g. flexible rods or inflatable tubes) could be ways of getting an erection. 
  • Think about other ways that you could enjoy sex without penetration (e.g. oral sex, kissing, masturbation or mutual masturbation). Many men can still achieve orgasm without a full erection. 
  • Talk with your sexual partner(s) about what feels good for you and ask what feels good for them.
  • Talk to your treating healthcare team about being referred to a professional (e.g. psychologist, sex therapist) or service that specialises in sexuality matters.

Change in penis size

A possible side effect of surgery is a reduced length and width of the penis, while erect and/or flaccid/soft.

Tips:

  • Talking with a health professional such as a psychologist or sex therapist/counsellor who can give you strategies to help you manage your feelings about changes to the appearance of your penis, if this does occur.

 

Changes during orgasm

The removal of the prostate can cause changes during orgasm. It is important to understand that after surgery you will have a ‘dry’ orgasm because semen is no longer produced. There is no ejaculate during orgasm but you will still feel the muscular spasms and pleasure that produce the orgasm. The lack of semen and sperm means that you will not be able to conceive children naturally in the future (see following page). Other changes could include the following.

  • Painful orgasm – Pain is felt during orgasm but little is known about its cause, this usually settles after a few orgasms.
  • Leaking urine on orgasm – There may be some involuntary release of urine during orgasm.
  • Speak with a continence nurse or physiotherapist as they can offer you techniques to improve any problems you may have. 
  • Empty your bladder before intercourse or use condoms if you leak urine during orgasm. 
  • Talk with a health professional such as a psychologist or sex therapist/counsellor who can give you strategies to help you manage your feelings about and reduce the impact of any changes during orgasm.

 

Infertility

Surgery for treating prostate cancer causes infertility. Even if you aren’t thinking about fertility now, having children or more children may be something you want to do later. If your doctor doesn’t raise fertility issues, you can ask your doctor or a member of your healthcare team for information about what can be done before the surgery. 

Tips:

  • If fertility is important for you, you could ask to be referred to a service that provides fertility–preserving options such as sperm banking (having some of your sperm stored) before you start treatment. That way, fathering a child using your stored sperm may be possible in the future.
Radiotherapy: What are the side effects and ways of managing them?

Radiotherapy may be used to treat prostate cancer by using X–rays to destroy cancer cells. It may be used to treat localised prostate cancer with the intent to cure. In some cases, people may also be given radiotherapy with the intent to cure, even if the cancer has spread to other parts of the prostate region (locally advanced prostate cancer). Radiotherapy is a treatment that targets the prostate gland, and methods of delivering radiotherapy have improved over time. Nonetheless, side effects do occur. These depend on the type of radiotherapy treatment you have.

Types of radiotherapy

The two main types of radiotherapy for treating prostate cancer are: 1) external beam radiation therapy (EBRT); and 2) brachytherapy (permanent low dose rate and temporary high dose rate).

External beam radiation therapy (EBRT)

EBRT involves aiming a beam of radiation at the prostate, from a machine outside of the body, to destroy or control the cancerous cells. The side effects from EBRT can be short–term and long–term. Unlike most short–term side effects that will lessen or disappear soon after treatment has finished, long–term side effects can last for several months or be permanent. The side effects include:>

Bowel and urinary problems

Because the bladder and bowel are close to the prostate, the radiation can affect these organs in ways that can cause changes to your toileting routine. Urinary problems can include burning or stinging during urination, frequent urination or incontinence. Bowel problems can be mild and include looseness and frequency of bowel motions or incontinence. Occasionally, bleeding from the back passage (rectum) may occur. 

Tips:

  • Talk with a continence nurse or physiotherapist for information on pelvic floor exercises. Pelvic floor muscles are important for continence control (see bladderbowel.gov.au). 
  • Use of pads could help with concerns you may have when in public. A continence nurse can offer suggestions about the best products for your needs. The Continence Aids Payment Scheme (CAPS) may provide financial assistance for continence products.
  • Speak to your treating radiation oncologist, a continence nurse or a bowel specialist if you have any bleeding from the back passage and for suggestions that are specific to your needs
  • Talk with members of your healthcare team (e.g. dietitian) about a diet that could improve your bowel function.

Fatigue

Your energy levels may drop during and shortly after your treatment because of the effect the treatment has on the whole body. Fatigue can also be caused by the demands of having treatment (e.g. travelling to the treatment centre), the chores that need to be done even when feeling unwell, and the emotional stress of living with the disease.

Tips:

Talk with your healthcare team about ways to help you cope better with fatigue. They may develop a fatigue management plan for you. Some things you can do include:

  • doing some light activities (e.g. short, easy walks) or weight bearing exercises can help you feel less tired 
  • making sure you get plenty of rest by having regular breaks during the day
  • doing what you have to do when you have the most energy
  • planning activities you need to do so you’re not rushed
  • prioritising activities so you only do those that are necessary
  • asking for help so you don’t feel you have to do everything. 

Skin changes

You may have temporary skin irritations between your legs and around your anus when you received treatment (e.g. skin becomes dry or itchy, and skin colour becomes darker).

Tips:

Talk with your treating healthcare team if you experience any skin irritations as they can suggest suitable treatments so it doesn’t get worse. Some other ways that can help to manage skin irritations include:

  • when washing, use water at a comfortable temperature and non–irritant soap
  • keep skin clean and dry
  • wear loose–fitting clothing
  • check your skin as needed to look for any changes (such as soreness, a rash or redness) or broken skin that may lead to infection.

Sexual difficulties

It may be some years before radiotherapy has any impact on your ability to have erections, but your ability to have erections can be affected after radiotherapy. This is because the treatment may cause changes to the nerves that control erections. When you ejaculate, the first few ejaculations may be painful, and there may be less semen or no semen at all with time after radiotherapy of all types because of the effect the treatment has on the prostate and urethra. The amount of semen may also be reduced if hormone therapy is used with radiotherapy (please see the ‘Use of hormone therapy with radiotherapy’ section further on). [Please see Section 4 for ways of managing these difficulties.]

Infertility

Radiotherapy can cause fertility problems because it damages the cells that make semen, and can affect your ability to have an erection. [Please see Section 4 for ways of managing this issue.]

Brachytherapy

Brachytherapy is when radioactive material is given directly into the prostate at either at a low dose rate (LDR) or high dose rate (HDR). LDR and HDR relate to the speed with which the dose is delivered, not the actual dose itself. Brachytherapy may not be available in your local public hospital.

  • LDR – It is given by implanting permanent radioactive seeds directly into the prostate. The seeds give off a focused amount of radiation to the prostate with the aim of destroying the cancer cells. LDR brachytherapy is generally a treatment for men with localised prostate cancer. Placement requires surgery that may take a few hours but you may be able to have the treatment as a ‘day–only patient’ or have an overnight stay.
  • HDR – It is also given by inserting radioactive material directly into the prostate but unlike LDR seeds, the placement of the material is temporary and for shorter periods – usually for a day or two at a time. The procedure takes place at a hospital but may require a longer stay than if receiving LDR brachytherapy. It is usually given in combination with EBRT for locally advanced disease. 

Similar to EBRT, the main side effects from brachytherapy include:

Bowel and urinary problems

Because the bladder and bowel are close to the prostate, the radiation can affect these organs in ways that can cause changes to your toileting routine such as needing to urinate more often or having diarrhoea, as well as other urinary and bowel problems such as blood in your urine or faeces, or discomfort when urinating. These effects could be less severe than those you get with EBRT because the treatment is localised to the prostate more accurately.  

Sexual difficulties

Your ability to have erections can be affected over time because of the damage the treatment can cause to nerves that control erections. It is also possible that when you ejaculate, there is less semen because of the effect the treatment has on the prostate.

Fatigue

Your energy levels may drop during and shortly after your treatment because of the effect the treatment has on the whole body. Fatigue can also be caused by the demands of having treatment (e.g. travelling to the treatment centre), the chores that need to be done even when feeling unwell, and the emotional stress of living with the disease.

Fertility issues

Because radiation can affect sperm production during treatment, and if parenthood is a concern for you, it is important that you speak with your doctor so you can find out about fertility preserving procedures.

[For tips to manage these side effects, please see the EBRT section.]

Use of hormone therapy with radiotherapy

"Hormone therapy, also known as androgen deprivation therapy (ADT), is usually offered with radiotherapy to improve treatment and overall survival. The more common side effects from hormone therapy include the following.

Loss of libido and erectile difficulties

Lowering testosterone levels may cause a reduction of sexual interest and erectile difficulties. [Please see previous sections for ways of managing these difficulties.]

Hot flushes

Changes in your hormone level can trigger sudden intense hot sensations in your upper body.

Tips:

  • Some medications can help with hot flushes.
  • Some complementary therapies can help with hot flushes (e.g. acupuncture).

Tiredness (fatigue)

Hormone therapy can make you feel tired because of its effect on your whole body. Fatigue can also be caused by the cancer itself and everything you have to do to manage it.

Tips:

  • Do some light exercise (e.g. short, easy walks) to help you feel less tired.
  • Make sure you get plenty of rest by having regular breaks during the day.
  • Do what you have to do when you have the most energy.
  • Plan ahead and prioritise activities so you only do those that are necessary.
  • Ask for help so you don’t feel you have to do everything.

Weight gain

Changing the level of testosterone can cause men to retain fluid and gain weight.

What are other ways of managing side effects?

Prostate cancer treatment related side effects can be debilitating and hard to live with. They can affect your overall wellbeing, how you feel, how you live your day–to–day life, your relationships with others, your body–image, your social life, and your sexuality. It is easy to feel down and wonder whether or not you made the right decision about treatment when you are living with side effects. 

The following are further ways that may help you with managing side effects from prostate cancer treatments.

Make adjustments to your daily life 

A useful way of coping with side effects is to adjust and make changes to your daily life so they don’t overwhelm you. For example, organise your work demands and obligations to fit in with time needed for recovery from treatments and their side effects. If you can’t cut back your work hours, maybe you could rearrange things so you are able to rest during the periods of the day when you feel least well. Don’t feel you have to perform at the same level as before.

Look after your overall health 

Improve your diet, exercise regularly and learn other ways of looking after your overall health and wellbeing. Members of your healthcare team can provide you with advice and support as how to do this (e.g. GP, dietitian, physiotherapist, exercise physiologist).

‘I would really want someone that I can talk to as a peer if you like. I don’t mean somebody else who is suffering from the same disease, but I like the idea of this counsellor type person.’ 

Living with some side effects can affect your mood and mental health. Medications can help. You can also talk to a mental health professional (e.g. a qualified counsellor, psychologist, psychiatrist, GP or social worker) to learn ways of living with the mood changes caused by side effects.

Share how you feel with someone you trust 

Sharing your fears, concerns and stress with your partner or someone you trust (e.g. a family member or close friend) can help you manage treatment side effects. Talking with someone you trust about your concerns can help you cope better, and can also help them support you in ways that are right for you. Some things to keep in mind: 

  • choose a good listener 
  • choose a good time to share how you feel 
  • be truthful about your feelings.

Be upfront with your partner

Being diagnosed with prostate cancer, undergoing treatment, and living with its side effects can be stressful for people in relationships, and affect the way they express intimacy in their relationships. 

It is important to talk about the side effects that could affect your relationship with your partner. Talking about these changes can be difficult if you are not used to discussing these types of matters, but talking frankly about your fears and concerns can maintain a positive relationship with your partner. 

In contrast, not talking about these side effects can cause frustration, misunderstanding and reduce intimacy because you and your partner are ‘second guessing’ each other. Intimacy can be improved by talking because it’s about being physically as well as emotionally close to someone, and can be expressed in other ways such as enjoying time alone together, showing affection, offering and receiving comfort and reassurance.

Future partners 

If you are single, it is understandable that you may find it hard to talk to a potential partner about treatment side effects such as erectile difficulties. Sometimes it helps to practise what you want to say and how you want say it. Talking about the changes caused by side effects can help potential partners understand and can help you both work out a way to deal with changes. When to bring up these issues depends on you. Everyone is different so there isn’t a ‘right’ time – just the ‘right’ time for you.

Talking to a health professional 

You may also find it useful to talk with a health professional (e.g. GP) other than your partner, family members or friends about your mood or emotional wellbeing. Living with some side effects can affect your mood and mental health. Medications can be used to help improve your mood and how you feel, and talking with a mental health professional (e.g. a qualified counsellor, psychologist, or social worker) can also help you by showing you ways to manage side effects that can help you feel better physically and emotionally. 

‘I think people who have been through it before might offer more of a human view … of the journey that people are going through.’ 

Sometimes being able to talk with other people who have been through similar experiences with side effects can be useful. A way of meeting others who have similar experiences is at a support group. 

In a support group, people can talk freely about many things including what they have experienced. Prostate Cancer Foundation of Australia (PCFA – www.pcfa.org.au) has support groups specifically for younger men who may have the same concerns around work and family and who can share tips about ways of managing side effects and recovery. 

Research shows that people who join a support group feel: 

  • a sense of belonging 
  • a sense of community 
  • as though they are not alone 
  • accepted and supported 
  • empathy 
  • understood 
  • as though they are being cared for 
  • safe to express their feelings and fears. 

In addition to face–to–face support groups, telephone and internet support are also available (for contact details, please see Section 8 – ‘Where to go to get support and assistance?’).

Complementary medicine

Some men with prostate cancer may use complementary therapies along with the conventional prostate cancer treatments to help them manage symptoms or side effects from treatments, and to improve their quality of life. 

If you are thinking about using complementary therapies, it is important that you use safe and proven therapies and not therapies that are unproven, possibly harmful and promoted as alternatives or substitutes for conventional medicine. Talk with members of your healthcare team about this. There is evidence to show that physical activity, meditation, yoga and acupuncture can help with managing the physical and emotional symptoms of cancer. It is important that you speak with your healthcare team if you are thinking of using complementary therapies. They may be able to advise you which ones could be useful for you, and ones that would not interfere with your prescribed conventional medicines. 

Listed below are some questions you may want to ask members of your healthcare team about complementary therapies: 

  • What are the useful complementary therapies for me? 
  • How will they help me? 
  • What is the evidence to show they work? 
  • Do they have side effects? What are they? 
  • Will they interfere with the conventional prostate cancer treatment I am having or want to have? 
  • What are the financial costs of the complementary therapies being suggested? 

For more information about the use of complementary therapies, see Understanding complementary therapies – a guide for people with cancer, their families and friends (Cancer Council NSW).

A more detailed look at the impact of living with prostate cancer and side effects is in one of the booklets in this series: Maintaining wellbeing in younger men with prostate cancer

Financial costs

Managing the side effects of many of the prostate cancer treatments may mean extra financial costs (e.g. additional medications or services). It is important for you to talk with members of your healthcare team about the costs of services or medications they may suggest.

In Australia, through the Pharmaceutical Benefits Scheme (PBS), the Australian Government subsidises the cost of listed prescription medicine to all residents and eligible overseas visitors.

The PBS Schedule lists all of the medicines available to people at a Government–subsidised price. The Schedule is part of the wider PBS managed by the Department of Health and administered by Department of Human Services

Talk to a member of your healthcare team (e.g. social worker) about what financial and practical support services are available. Talk to your local Medicare office about the ‘Pharmaceutical Benefits Scheme Safety Net’ and the ‘Medicare Safety Net’ on costs of medications and medical bills.

Where to get more information

Prostate Cancer Foundation of Australia (PCFA)
contact-phone-sm 02 9438 7000 or
spacer 1800 220 099 (freecall)
contact-letter-sm enquiries@pcfa.org.au
contact-mouse-sm www.pcfa.org.au

Cancer Australia
contact-phone-sm 02 9357 9400 or
spacer 1800 624 973 (freecall)
contact-mouse-sm www.canceraustralia.gov.au

Cancer Council Australia
contact-mouse-sm www.cancer.org.au

Cancer Connections
contact-phone-sm 13 11 20
contact-mouse-sm www.cancerconnections.com.au

Andrology Australia
contact-phone-sm 1300 303 878
contact-letter-sm info@andrologyaustralia.org
contact-mouse-sm www.andrologyaustralia.org

Continence Foundation of Australia
contact-phone-sm 03 9347 2522
contact-letter-sm info@continence.org.au
contact-mouse-sm www.continence.org.au

Impotence Australia
contact-phone-sm 02 9280 0084 or
spacer 1800 800 614 (freecall)
contact-letter-sm admin@impotenceaustralia.com.au
contact-mouse-sm www.impotenceaustralia.com.au

Talk It Over – Men’s Line Australia
contact-phone-sm 1300 789 978
contact-mouse-sm www.menslineaus.org.au

beyondblue – The National Depression Initiative
contact-phone-sm 1300 224 636
contact-mouse-sm www.beyondblue.org.au

Lifeline Australia
contact-phone-sm 13 11 14 (24 hour service)

Black Dog Institute
contact-phone-sm 02 9382 4523
contact-letter-sm blackdog@blackdog.org.au
contact-mouse-sm www.blackdoginstitute.org.au


Cancer Councils

Cancer Council ACT
contact-phone-sm 02 6257 9999
contact-letter-sm reception@actcancer.org
contact-mouse-sm www.actcancer.org

Cancer Council NSW
contact-phone-sm 02 9334 1900
contact-letter-sm feedback@nswcc.org.au
contact-mouse-sm www.cancercouncil.com.au

Cancer Council Northern Territory
contact-phone-sm 08 8927 4888
contact-letter-sm admin@cancernt.org.au
contact-mouse-sm www.cancercouncilnt.com.au

Cancer Council Queensland
contact-phone-sm 07 3258 2200
contact-letter-sm info@cancerqld.org.au
contact-mouse-sm www.cancerqld.org.au

Cancer Council South Australia
contact-phone-sm 08 8291 4111
contact-letter-sm tcc@cancersa.org.au
contact-mouse-sm www.cancersa.org.au

Cancer Council Tasmania
contact-phone-sm 03 6233 2030
contact-letter-sm infotas@cancertas.org.au
contact-mouse-sm www.cancertas.org.au

Cancer Council Victoria

contact-phone-sm 03 9635 5000
contact-letter-sm enquiries@cancervic.org.au
contact-mouse-sm www.cancervic.org.au

Cancer Council Western Australia
contact-phone-sm 08 9212 4333
contact-letter-sm inquiries@cancerwa.asn.au
contact-mouse-sm www.cancerwa.asn.au

Glossary & Sources

Adjuvant therapy or adjuvant treatment – Treatment given in addition to the primary treatment. In prostate cancer, adjuvant treatment often refers to hormone therapy or chemotherapy given after radiotherapy or surgery, which is aimed at destroying any remaining cancer cells. 

Advanced prostate cancer – Prostate cancer that has spread to surrounding tissue or has spread to other parts of the body.

Alternative therapy – Therapy used instead of standard medical treatment. Most alternative therapies have not been scientifically tested, so there is little proof that they work and their side effects are not always known.

Anaemia – A drop in the number of red blood cells in your body. Anaemia decreases the amount of oxygen in the body and may cause tiredness and fatigue, breathlessness, paleness and a poor resistance to infection. 

Brachytherapy – A type of radiotherapy treatment that implants radioactive material sealed in needles or seeds into or near the tumour. 

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. 

Chemotherapy – The use of drugs, which kill or slow cell growth, to treat cancer. These are called cytotoxic drugs. 

Clinical trial – Research conducted with the person’s permission, which usually involves a comparison of two or more treatments or diagnostic methods. The aim is to gain a better understanding of the underlying disease process and/or methods to treat it. A clinical trial is conducted with rigorous scientific method for determining the effectiveness of a proposed treatment. 

Cultural engagement – actively involve people with respect to their cultural needs.

Cells – The building blocks of the body. Cells can reproduce themselves exactly, unless they are abnormal or damaged, as are cancer cells. 

Diagnosis – The identification and naming of a person’s disease. 

Digital rectal examination (DRE) – An examination of the prostate gland through the wall of the rectum. Your doctor will insert a finger into the rectum and is able to feel the shape of the prostate gland. Irregularities in the shape and size may be caused by cancer. 

Erectile dysfunction – Inability to achieve or maintain an erection firm enough for penetration.

External beam radiotherapy (EBRT) – Uses x-rays directed from an external machine to destroy cancer cells.

Fertility – Ability to have children.

Grade – A score that describes how quickly the tumour is likely to grow. 

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. 

Hormone therapy/treatment – Treatment with drugs that minimises the effect of testosterone in the body. This is also known as androgen deprivation therapy (ADT).

Incontinence – Inability to hold or control the loss of urine or faeces. 

Locally advanced prostate cancer – Cancer which has spread beyond the prostate capsule and may include the seminal vesicles but still confined to the prostate region.

Lymph nodes – Also called lymph glands. Small, bean-shaped collections of lymph cells 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. 

Lymphoedema – Swelling caused by a build-up of lymph fluid. This happens when lymph nodes do not drain properly, usually after lymph glands are removed or damaged by radiotherapy.

Metastatic prostate cancer – Small groups of cells have spread from the primary tumour site and started to grow in other parts of the body – such as bones.

Multidisciplinary care – This is when medical, nursing and allied health professionals involved in a person’s care work together with the person to consider all treatment options and develop a care plan that best meets the needs of that person. 

Osteoporosis – A decrease in bone mass, causing bones to become fragile. This makes them brittle and liable to break. 

Pelvic floor muscles – The floor of the pelvis is made up of muscle layers and tissues. The layers stretch like a hammock from the tailbone at the back to the pubic bone in front. The pelvic floor muscles support the bladder and bowel. The urethra (urine tube) and rectum (anus) pass through the pelvic floor muscles. 

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, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production. 

Prostate gland – The prostate gland is normally the size of a walnut. It 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 (PSA) – A protein produced by cells in the prostate gland, which is usually found in the blood in larger than normal amounts when prostate cancer is present. 

Quality of life – An individual’s overall appraisal of their situation and wellbeing. Quality of life encompasses symptoms of the disease and side effects of treatment, functional capacity, social interactions and relationships and occupational functioning.

Radical prostatectomy – A surgical operation that removes the prostate. 

Radiotherapy or radiation oncology – The use of radiation, usually x-rays or gamma rays, to kill tumour cells or injure them so they cannot grow or multiply.

Self-management – An awareness and active participation by people with cancer in their recovery, recuperation and rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing.

Shared decision-making – Integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions. It involves clinicians and patients making decisions about the patient’s management together.

Side effect – Unintended effects of a drug or treatment. 

Stage – The extent of a cancer and whether the disease has spread from an 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 nodes and the metastases. Staging may be based on clinical or pathological features. 

Standard treatment – The best proven treatment, based on results of past research. 

Support group – People on whom an individual can rely for the provision of emotional caring and concern, and reinforcement of a sense of personal worth and value. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices. 

Supportive care – Improving the comfort and quality of life for people with cancer. 

Survivorship – In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life. 

Testicles – Organs which 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-Node-Metastasis (TNM) System – A staging system used by clinicians to describe how advanced a particular cancer is, which then informs the type of treatment provided. 

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. 


Sources: 

American Cancer Society (2012). Prostate Cancer PDF

Australian Cancer Network Management of Metastatic Prostate Cancer Working Party. (2010). Clinical practice guidelines for the management of locally advanced and metastatic prostate cancer. Sydney: Cancer Council Australia and Australian Cancer Network. 

Australian Institute of Health and Welfare 2013. Prostate cancer in Australia. Cancer series no. 79. Cat. no. CAN 76. Canberra: AIHW. 

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

Australian Institute of Health and Welfare. (2012). Cancer in Australia: an overview, 2012. Cancer series no. 74. Cat. no. CAN 70. Canberra: AIHW. 

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

Australian Psychological Society 

beyondblue 

Bloch, S., Love, A., Macvean, M., Duchesne, G., Couper, J., & Kissane, D. (2007). Psychological adjustment of men with prostate cancer: a review of the literature. BioPsychoSocial Medicine, 1(2). 

Cancer Council Australia. (2009). Advanced prostate cancer – a guide for men and their families. 

Cancer Council Australia. (2010). Localised prostate cancer – a guide for men and their families. 

Cancer Council NSW. (2012). Understanding clinical trials and research – a guide for people affected by cancer. 

Cancer Council NSW. (2012). Understanding complementary therapies – a guide for people with cancer, their families and friends. 

Cassileth, B., Gubili, J., & Yeung, K. (2009). Integrative medicine: complementary therapies and supplements. Nature Reviews Urology, 6(4), 228-233. 

Chapman, S., Barratt, A., & Stockler, M. (2010). Let sleeping dogs lie? What men should know before getting tested for prostate cancer. Sydney: Sydney University Press. 

Department of Health. (2012). Multidisciplinary cancer care – Literature review. Melbourne: State Government of Victoria. 

Department of Health Services. (2007). Achieving best practice cancer care – A guide for implementing multidisciplinary care. Melbourne: State Government of Victoria. 

Department of Human Services. (2006). Patient management framework - Genitourinary tumour stream: prostate cancer. Melbourne: State Government of Victoria. 

Enck, R. E. (2013). Heightened Optimism in the Treatment of Advanced Prostate Cancer. Home Health Care Management & Practice, 25(1), 3-5. 

Eggenberger, S., Krumwiede, N., Meiers, S., Bliesmer, M., & Earle, P. (2004). Family caring strategies in neutropenia. Clinical Journal of Oncology Nursing, 8(6), 617-621. 

Ferrell, B., & Hastie, B. (2003). Interventions at the end of life. In C. W. Given, B. Given, V. L. Champion, S. Kozachik & D. N. DeVoss (Eds.), Evidence-based cancer care and prevention (pp. 371-406). New York: Springer Publishing Company. 

Frisk, J. (2010). Managing hot flushes in men after prostate cancer – A systematic review. Maturitas, 65(1), 15-22. 

Gomella, L. G., Johannes, J., & Trabulsi, E. J. (2009). Current prostate cancer treatments: effect on quality of life. Urology, 73(Supplement 5), S28-S35. 

Jonsson, A., Aus, G., & Bertero, C. (2009). Men’s experience of their life situation when diagnosed with advanced prostate cancer. European Journal of Oncology Nursing, 13(4), 268-273. 

Kirby, R. S., Partin, A. W., Parsons, J. K., & Feneley, M. R. (Eds.). (2008). Treatment Methods for Early and Advanced Prostate Cancer. London: Informa Healthcare. 

Kumar, R. J., Barqawi, A., & Crawford, E. D. (2005). Adverse events associated with hormonal therapy for prostate cancer. Reviews in Urology, 7(Supplement 5), S37-S43. 

Mitra, A. (2006). How to find happiness: By beating depression. Alego Publishers: Sydney 

National Health & Medical Research Council. (2003). Clinical Practice Guidelines: Evidence–based information and recommendations for the management of localised prostate cancer. Canberra. 

National Health and Medical Research Council. (2013). Australian Dietary Guidelines. Canberra: National Health and Medical Research Council

National Health and Medical Research Council. (2009). Australian guidelines to reduce health risks from drinking alcohol. Canberra: National Health and Medical Research Council. 

Osteoporosis Australia. (2012). What you need to know about Osteoporosis. www.osteoporosis.org.au/images/stories/consumer_resources_updated/oa_consumer_ brochure.pdf 

Perczek, R. E., Burke, M. A., Carver, C. S., Krongrad, A., & Terris, M. K. (2002). Facing a prostate cancer diagnosis. Cancer, 94(11), 2923-2929. 

Rackley, J., Clark, P., & Hall, M. (2006). Complementary and alternative medicine for advanced prostate cancer. Urologic Clinics of North America, 33(2), 237-246. 

Rock, C. L., Doyle, C., Demark-Wahnefried, W., Meyerhardt, J., Courneya, K. S., Schwartz, A. L., Bandera, E. V., Hamilton, K. K., Grant, B., McCullogh, M., Byers, T., & Gansler, T. (2012). Nutrition and physical activity guidelines for cancer survivors. CA: A Cancer Journal for Clinicians, 62(4), 242-274.

Sharifi, N. (2010). New agents and strategies for the hormonal treatment of castration-resistant prostate cancer. Expert Opinion on Investigational Drugs, 19(7), 837-846.

Roesch, S. C., Adams, L., Hines, A., Palmores, A., Vyas, P., Tran, C., Pekin, S., & Vaughn, A. (2005). Coping with prostate cancer: a meta-analytic review. Journal of Behavioral Medicine, 28(3), 281-293.

Sims J., Hill K., Hunt S., Haralambous B., Brown A., Engel L., Huang N., Kerse N., and Ory M. (2006). National physical activity recommendations for older Australians: Discussion document. Canberra: Australian Government Department of Health and Ageing 

Ussher, J., Butow, P., Wain, G., Hobbs, K., Smith, K., Stenlake, A., Kirsten, L., & Sandoval, M. (2005). Research into the relationship between type of organisation and effectiveness of support groups for people with cancer and their carers. Sydney: Cancer Council NSW.