Introduction

This booklet is for men who have been diagnosed with advanced prostate cancer. It contains information to help you understand treatment options for advanced prostate cancer. It may also be helpful for your family and friends.

In Australia, prostate cancer is the most commonly diagnosed cancer in men. It is estimated that in 2014, about 21,000 Australian men will be diagnosed with prostate cancer, accounting for approximately 30% of all new cancers in men.

There are different stages of advanced prostate cancer. Sometimes your cancer cannot be cured, but it is possible to slow the growth of the cancer and reduce symptoms to improve your quality of life. Many treatments can improve survival, which means many men live for years with advanced prostate cancer.

 


 

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.

Your cancer journey

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. This booklet aims to provide you with information to help you decide which of the treatments for advanced prostate cancer is best for you, where to find more information and organisations to support you on your cancer journey. Being informed enables you to participate in decisions about your care and leads to improved experiences and better care.

What is advanced prostate cancer?

Advanced prostate cancer is when the cancer is no longer contained within the prostate gland, and cancer cells have spread to other parts of the body. 

There are different stages of advanced prostate cancer:

  • Locally advanced – the cancer has extended beyond the prostate and may include seminal vesicles (tumour stage T3) or other surrounding organs such as the bladder or rectum (tumour stage T4)
  • Metastatic – the cancer has spread to distant parts of the body such as bone.

For some men, there is sometimes no evidence of disease spreading to other parts of the body, either through a bone scan or a CT (computed tomography) scan, but their prostate-specific antigen (PSA) rises even after they have had treatment. The rising PSA is a form of progression showing the disease is active, known as ‘biochemical progression’.

You can read more about ‘What is advanced prostate cancer’ in one of the booklets in this series: Diagnosis.

What to consider when making treatment decisions

Making decisions about treatments can be confusing and difficult because of all the issues you need to consider. It is about finding the right treatment option for you. Remember that you don’t need to make the decision alone. It is a good idea to discuss your treatment options with your partner, family and friends. Your healthcare team is also there to help you make treatment decisions. 

Listed below are some questions you may want to ask members of your healthcare team about treatment options for advanced prostate cancer:

  • What are all the treatment options available?
  • What is the standard treatment of my stage of prostate cancer?
  • What do the treatments do? (Do they aim to remove or just contain the cancer?)
  • What are the treatment procedures?
  • What are the benefits and how likely are they?
  • What are the possible side effects?
  • What do I have to do and how may it affect my day-to-day life? (e.g. travel to a treatment centre, time off work, changes in responsibilities)
  • How will the treatments be monitored?
  • What are the costs involved with the treatments?
  • How may the treatments affect other health conditions I may have?

You will likely think of other questions too. It may take several visits with your doctor before you feel you have all the answers you need to make a decision. Bear the following in mind. 

  • Take your timeAlthough an advanced prostate cancer diagnosis may make you feel you need to start treatment straight away, it is important to take time to know and understand what the treatment involves. In most situations, there is time for you to think before making a decision. 
  • You can change your decisionIf the treatment causes too many other problems for you (such as side effects), you can always talk with your doctor about taking up another treatment option. 
  • Get a second opinionGetting an opinion from another doctor is common. It will not offend your doctor. Your doctor may even recommend it. Also, treatments are often coordinated across different specialties so speaking with all health professionals you are seeing can help you with your treatment decision. 

After understanding all the information about treatment options, talking with members of your healthcare team, partner, families and friends, and taking into account your personal beliefs, you may choose not to have any treatment. This is a valid choice.

What are the treatment options?

‘He didn’t have time to go in and explain to me the options and the benefits and risks associated with the options. He just gave me the book and left it to me.’

The best treatment option for you depends on how far the cancer has spread and other factors such as your age and overall health. The standard treatment options for treating advanced prostate cancer are radiotherapy, hormone therapy, also known as androgen deprivation therapy (ADT), chemotherapy or a combination of these.

For some men, surgery to remove the prostate gland is still a treatment option when the cancer has just spread a little way outside the prostate gland (locally advanced prostate cancer).

However, if your cancer has spread to other parts of your body, or metastasised, treatments will aim to control or contain the cancer. Where the disease has spread will influence the recommendations your doctor will make about your personalised treatment.

Surgery

Sometimes men with locally advanced prostate cancer may be offered surgery, with or without adjuvant radiotherapy (i.e. radiotherapy given after surgery). The prostate will be removed in a procedure called a radical prostatectomy. This involves the removal of the entire prostate gland as well as some of the tissues surrounding it. Surgery is generally offered to healthy men whose cancer has not spread to other parts of the body.

Some locally advanced prostate cancers are more aggressive than others, and the exact treatment will depend on a number of factors that your doctor will take into account. If the cancer has spread just beyond the prostate, surgery is a possibility, if you are suitable for surgery. For cancer that has spread further, radiotherapy and hormone treatment is a standard treatment. 

A radical prostatectomy can be done in different ways

  • Open radical prostatectomy – A cut is made below the navel to the pubic bone, to get to the prostate gland. 
  • Laparoscopic radical prostatectomy – This is also known as ‘keyhole surgery’. A number of small cuts are made to allow insertion of a camera and instruments. The actual procedure is the same as open surgery, but done through smaller incisions, so you recover faster. 
  • Robotic-assisted radical prostatectomySimilar to laparoscopic surgery, but performed with instruments that have a greater range of movement than standard laparoscopic ones. This may not be offered at your local public hospital.

[Note: Laparoscopic and robotic forms of surgery have similar recovery periods and side effects, so the choice of surgery is largely dependent on what your surgeon feels most comfortable with. At this time, there is no high level evidence that one technique is better than the other.] 


Radical prostatectomy

Radical prostatectomy (the dotted line shows organs that are removed)

Surgery can cause side effects such as erectile problems, being unable to produce semen, incontinence, and change in penis size. Surgery will also cause infertility so if you wish to have children in the future, you will need to discuss alternatives such as having some of your sperm stored before treatment starts (this is called sperm banking). 

You can read more about side effects in one of the booklets in this series: Side Effects.

Further questions to ask 

As well as the questions in Section 3, the following questions could be useful for you to ask your healthcare team about the form of radical prostatectomy that is recommended to you: 

  • Why are you recommending this particular option instead of radiotherapy? 
  • What are the advantages and disadvantages of this form of surgery for my situation? 
Radiotherapy

Radiotherapy uses X-rays to destroy cancer cells. Radiotherapy may be used to treat different parts of the body that are affected by prostate cancer, and is used to treat both locally advanced and metastatic prostate cancer.

There are two main types of radiotherapy – external beam radiotherapy (EBRT) and brachytherapy. The difference is whether radiotherapy is applied from outside the body (EBRT) or inserted directly into the prostate (brachytherapy). Not all cancer treatment centres offer brachytherapy. Talk with your healthcare team about the availability of treatment options in your area.

Radiotherapy can be also given after surgery if:

  • your cancer may have spread after initial treatment (e.g. surgery for locally advanced prostate cancer) – this is called ‘adjuvant’ radiotherapy
  • your PSA level started to rise – this is called ‘salvage’ radiotherapy

For men with metastatic prostate cancer, a low dose of radiotherapy can be used to shrink the cancer and relieve some symptoms (such as swollen lymph nodes or bone pain). Radiotherapy can also slow down the cancer’s growth and size of the cancer in the treated areas and may reduce the amount of pain-relieving medications you may be required to take or are taking. It is relatively fast-acting and you should feel pain relief within 1-3 weeks. Such radiotherapy does have side effects, but these will depend upon the site treated and the dose prescribed, but the intent of such treatment is to keep these minimised. However if symptoms of pain return you may require further treatment (please see a later section for more information about treatments to relieve symptoms).

External beam radiotherapy (EBRT) uses high energy x-ray beams that are directed at the prostate from the outside. Generally people have this treatment in a hospital setting daily for 7-8 weeks. During your EBRT treatment, you can continue to do what you would normally do if you’re able but it can interfere with some day-to-day activities as you may need to schedule multiple hospital visits, and there are side effects. 

External beam radiotherapy (EBRT) can cause side effects such as fatigue, skin discomfort around the area where the rays penetrated the skin, erectile problems, and urinary or bowel problems. Urinary problems can include burning or stinging during urination, or frequent urination or incontinence. Bowel problems can be mild but include looseness and frequency of bowel motions, or incontinence. Occasional bleeding from the back passage may occur, and should be reported to your healthcare team.

Brachytherapy is when radioactive material is inserted directly into the prostate. The procedure takes place at a hospital. It is sometimes given in combination with EBRT for locally advanced disease.

Brachytherapy can cause side effects such as soreness, frequent and difficult urination, and bowel discomfort. You can usually resume normal activities a couple of weeks after the procedure. You can start having sex straight after brachytherapy but you may not feel like it for the first few weeks. Initially you should wear a condom as the ejaculate may be bloodstained.


 

Use of hormone therapy before and after radiotherapy

Hormone therapy, also known as androgen deprivation therapy (ADT), is usually given before radiotherapy, called neo-adjuvant therapy, because this makes it a better treatment and improves treatment outcome. It’s been shown that using hormone therapy before and during radiotherapy can reduce the chance of the cancer spreading and improve survival. For men with higher risk cancer, hormone therapy is also given after radiotherapy (adjuvant therapy) to improve treatment outcome and overall survival. 

There is more information about hormone therapy here.

Further questions to ask

As well as the questions in Section 3, the following could be useful for you to ask your healthcare team about the form of radiotherapy that is recommended to you:

  • What are the advantages and disadvantages of EBRT and brachytherapy for my situation?
  • Will hormone therapy be used before and/or after my radiotherapy?
Hormone therapy (Androgen deprivation therapy)

Prostate cancer is driven by hormones. So by reducing hormones, it is possible to slow the growth of the cancer. This is known as hormone therapy, also known as androgen deprivation therapy (ADT), and is the standard first treatment when prostate cancer has spread (metastatic prostate cancer). 

Testosterone is a male sex hormone (or androgen), which is produced by the testicles. It is vital in reproductive and sexual function. Hormone therapy reduces testosterone levels, and can often keep the cancer under control for several years by shrinking it, delaying its growth and reducing symptoms. How well hormone therapy controls the cancer is different from one man to another. It depends on how aggressive the cancer is, and how far the cancer has spread when you start hormone therapy. 

Your doctor will speak with you about the different types of hormone therapy available and what is best for you, depending on your specific needs and situation. There are three main types of hormone therapy for advanced prostate cancer.

Injections to stop the production of testosterone

Injections block the messages from the brain to make testosterone, or block its action in the tissues. The drug (luteinizing hormone releasing hormone (LHRH) agonist*) can be injected under the skin or into the muscle monthly or every 3, 4 or 6 months.

Tablets to block the effects of testosterone (anti-androgens)

Anti-androgen drugs stop testosterone from getting to the prostate cancer cells so they are not able to grow. They are taken as tablets and may be used in combination with injections (see above) or orchidectomy (see below) to completely stop the action of testosterone in the body because they are not as effective on their own.

Orchidectomy

This form of hormone therapy involves the surgical removal of the testicles. Even though it involves surgery, its main effect is as a form of hormone therapy. Unlike other types of hormone therapy, orchidectomy cannot be reversed. It is important for you to talk with members of your healthcare team to make sure this is the most appropriate option for you.

Listed below are some questions you may want to ask members of your healthcare team about the different types of hormone therapy

  • Why is this type of hormone therapy being recommended to me? 
  • Why are the other types not being recommended to me? 
  • What are the advantages and disadvantages of this type of hormone therapy over the other types? 

Hormone therapy can cause side effects such as loss of libido, erectile difficulties, hot flushes, fatigue, weight gain, loss of muscle mass and strength, thinning of the bones, risk of heart disease, and increased risk of developing or exacerbating existing diabetes.


You can read more about side effects from hormone therapy in one of the booklets in this series: Side Effects. 

In some situations, after you have been on hormone therapy for a while your doctor may suggest different ways of using hormone therapy such as intermittent androgen deprivation (sometimes called intermittent hormone therapy) and combined androgen blockade (sometimes called maximal androgen blockade). 

Intermittent androgen deprivationThis involves stopping treatment when test results (e.g. PSA) show that you are responding well to the hormone therapy. Treatment starts again when it is needed. Only using the therapy when it is needed will reduce the impact of side effects on your quality of life. However, this approach may not be as effective compared to if hormone therapy had been administered continuously, or quite as good in terms of overall survival, however this depends on the individual. 

Combined androgen blockade (CAB)This is when different types of hormone therapy are used together. The most common way of giving CAB is usually an injection (LHRH agonist) and anti-androgen together. It is not commonly used as a first treatment for metastatic prostate cancer because it increases the risk of side effects.

 

*LHRH is produced in the brain to stimulate the pituitary to make luteinizing hormone (LH). This causes cells in the testicles to make testosterone, the male hormone. LHRH agonists are drugs that affect the production of LH.

How will I know if my hormone therapy is working?

The PSA test is used to monitor if hormone therapy is working. The PSA is a clearer indicator for some men than others, depending on the type of advanced prostate cancer they have.

You know hormone therapy is working effectively when your PSA level drops and stays at a low level. Your doctor will speak with you about what that level should be and will also tell you how often you will need to have a PSA test or any other tests. You will also know hormone therapy is working when you are pain free, feeling well, have no unplanned weight loss and your tests are stable.


You know hormone therapy is not working effectively when
 
the results show that the PSA level has increased over time – this is not uncommon. For most men with advanced or metastatic prostate cancer, hormone therapy will work very successfully to control the cancer but it is hard to predict exactly how long for. It depends how far the cancer has spread and how well it responds to treatment.

Other clues that hormone therapy has stopped working include bone pain, urinary symptoms and difficulties, fatigue and other symptoms such as swelling in lower limbs, loss of appetite and weight loss. Tell your doctor or members of your healthcare team if any symptoms are getting worse, or if you have developed any new symptoms.

What to do when hormone therapy stops working?

It is possible that prostate cancer may progress after a while, even when it has been treated with hormone therapy. This is because the cancer cells can regrow and adapt to the change in the testosterone level. The cancer is then referred to as castrate resistant (or sometimes hormone refractory) because the cancer can progress without a normal level of testosterone in the body. New generation hormonal therapies are constantly being developed, which may still work even with a rising PSA with low testosterone. 

The types of treatment available when this happens depend on what treatments you previously had, your symptoms, and how the cancer is progressing. Although one type of hormone therapy may have stopped being effective for you, a different combination of hormone therapy could stop the cancer from progressing. Some treatments control the cancer while others control the symptoms, and some do both. The best treatment at this point is the one that suits your needs and situation.

Chemotherapy

Chemotherapy uses anti-cancer drugs to destroy cancer cells in advanced prostate cancer when the cancer has spread to other parts of the body. It cannot eradicate prostate cancer, but it can shrink it and slow its growth. Chemotherapy may help some men with advanced prostate cancer to live longer. Chemotherapy can also help relieve some of your symptoms. Because the side effects of chemotherapy can be severe and may limit what you can do, your doctor may assess whether you are fit enough to go through a course of chemotherapy. You may also be prescribed steroid tablets along with your chemotherapy to prevent or reduce side effects such as poor appetite, weight loss, fatigue and low energy.

Chemotherapy is commonly given intravenously – that is, the medicine is given as a liquid through a fine tube into a vein in your arm. This way, the medicine goes into your bloodstream and moves through the whole body to attack any cancer cells that are there. Chemotherapy is usually given in a hospital setting but as an outpatient, which means you don’t have to stay overnight. The number of times you have to go, and the length of time you are there, depend on the chemotherapy treatment you have been prescribed by your doctor. Some chemotherapy drugs can be expensive. It is important to find out as much as you can about the treatment, procedure, possible side effects and outcomes so you are prepared. This can relieve the stress that some people experience when they are on chemotherapy.

Chemotherapy can cause side effects such as anaemia (low red blood cells), neutropenia (low white blood cells), fatigue, changes to appetite, bruising, constipation, diarrhoea, hair loss, nausea and vomiting, sore mouth or throat, nerve changes, skin and nail changes, watery eyes and runny nose, swelling, and infertility.

What are the treatments for relieving symptoms?

If you do have any pain, discomfort or any sensations that are difficult for you, tell your healthcare team. Hormone therapy and other treatments such as chemotherapy can help to control symptoms.

Pain management

There are different kinds of pain-relieving drugs to manage pain from prostate cancer. These include mild pain-relieving drugs that you can buy over the counter, and stronger drugs that require a prescription. Your healthcare team will suggest the right type of pain-relieving drug for your needs. They could also develop a pain management plan with you, or refer you to a pain clinic or a palliative care clinic. Depending on where you live, the palliative care team could visit you at home to help you manage your symptoms. Being linked with a palliative care clinic does not necessarily mean your cancer has become life-threatening. It may just mean you can benefit from support in managing your symptoms.

Management of bone problems

If the cancer spreads to the bones, it will damage them and may cause bone pain or fractures. Drugs called osteoclast inhibitors, such as bisphosphonates, are used to stop the bone breaking down. They can prevent or reduce pain and can prevent fractures and spinal cord compressions (known as skeletal-related events) caused by the spread of prostate cancer. Radiotherapy can also be helpful in reducing pain, preventing fractures or assisting in the repair of fractures.

Complementary therapies

Some men with advanced prostate cancer may choose to use complementary therapies as well as mainstream cancer treatment. There is evidence to show that physical activity, meditation, yoga and acupuncture can help with managing the physical and emotional symptoms of cancer. If you are thinking about using complementary therapies, it is important that you use safe and proven therapies and not therapies that are unproven or promoted as alternatives or substitutes to mainstream cancer treatment.

It is important that you speak with your healthcare team if you are thinking of using complementary therapies as well as mainstream cancer treatment because they may be able to advise on complementary therapies that are appropriate for you, and possible effects some complementary therapies and your mainstream treatment may have on each other.

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?
Are there new treatments?

New drugs and treatment approaches are constantly being developed and researched. New combinations of different strategies and therapies, as well as the development of new drugs, are constantly being trialled and tested to see if they can further improve treatment options for men with advanced prostate cancer and their quality of life. 

Clinical Trials 

Clinical trials are research studies that investigate a new test, treatment or medical procedure to find better ways to treat cancer. Some clinical trials compare new treatments with standard treatments or look at new combinations of treatments or new ways of giving treatments. You may or may not be eligible to take part in a clinical trial. Talk to your doctor about clinical trials that may be right for your needs.

For more information about clinical trials, see Understanding Clinical Trials and Research – A guide for people affected by cancer (Cancer Council NSW) and, the Australian Cancer Trials website (www.australiancancertrials.gov. au – Cancer Australia), a consumer friendly website about clinical trials conducted in Australia.

Financial costs

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 for 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 (www.pbs.gov.au/info/about-the-pbs). 

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 ‘Medicare Safety Net’ and the ‘Pharmaceutical Benefits Scheme Safety Net’ on costs of medications and medical bills.

Where to get information and support

Listed below are some of the leading organisations and services that can provide you accurate information and support about advance prostate cancer.

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 (PCFA state offices are listed on the website)


Cancer Australia

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


Australian advanced prostate cancer support groups (PCFA affiliated)

contact-phone-sm 07 3878 4567
contact-mouse-sm www.jimjimjimjim.com


Cancer Council Australia

contact-mouse-sm www.cancer.org.au


Cancer Council Helpline

contact-phone-sm 13 11 20


Andrology Australia

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


Fertility Society of Australia

contact-phone-sm (03) 3645 6359
contact-mouse-sm www.fertilitysociety.com.au


Impotence Australia

contact-phone-sm 1800 800 614 (national telephone support service for men and their partenrs)
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)
contact-mouse-sm www.beyondblue.org.au


Continence Foundation of Australia

contact-phone-sm (03) 9347 2522
contact-mouse-sm www.beyondblue.org.au


Cancer Connections

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


Fertility Society of Australia

contact-phone-sm (03) 3645 6359
contact-mouse-sm www.fertilitysociety.com.au


Black Dog Institute

contact-phone-sm 02 9382 4523
contact-letter-sm blackdog@blackdog.org.au
contact-mouse-sm www.blackdoginstiture.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