Advanced prostate cancer is cancer that has spread outside the prostate to other parts of the body. It is also called 'metastatic' prostate cancer. The cancer is not curable but treatment can keep it under control for many months and sometimes years. Prostate cancer can spread to any part of the body but it most commonly spreads to the bones and lymph nodes.

No, not all men will have pain. Some men will have no pain at all and others will have varying amounts of pain. More than a quarter (25 per cent) of men with prostate cancer that has spread to the bones will not have any pain. Men whose cancer has spread to several places will often only have pain in a few of these places.¹ With the right treatment, pain can usually be relieved or significantly reduced.

There may be more than one cause of pain. Possible causes include:

• The cancer may have spread to the bones.
• The cancer can sometimes spread to the lymph nodes, making them swollen and uncomfortable.
• Your pain may be due to something else and not your cancer.

If the cancer spreads to the lymph nodes it may lead to a condition called lymphoedema, which is caused by a blockage in the lymphatic system. The lymphatic system is part of the body's immune system and carries fluid called lymph around the body. If the lymphatic system is blocked, the fluid may build up in the body's tissues and cause swelling (lymphoedema), usually in the legs. The blockage may be caused by the cancer itself or by some treatments, such as surgery or radiotherapy. Lymphoedema is not common in prostate cancer. You may be at greater risk if you have had surgery and/or radiotherapy to lymph nodes. Lymphoedema may cause discomfort or pain but there are treatments to manage it.

Your specialist team should investigate the cause of your pain and then offer you the most appropriate treatments.

The most common place for prostate cancer to spread to is the bones. Up to eight out of ten men (80 per cent) with advanced prostate cancer will have cancer that has spread to the bones.² This does not mean that you have bone cancer. It means that some of the prostate cancer cells have spread to some areas of bone. This is called secondary prostate cancer. The cancer that has spread to the bone is called 'bone secondaries' or 'bone metastases'. In this fact sheet we use the term 'metastases' to describe prostate cancer that has spread to the bones.

The growth of the cancer in the bone causes the bone tissue to break down. This weakens the bone and may cause pain. The first areas of bone to be affected are likely to be those closest to your prostate including your pelvic bone, hips, lower spine and upper thighs. Pain in these areas can affect how you walk and move around. The pain may only be in one area but over time it can spread to several parts of your body. Men who have bone pain often describe it as a dull aching or stabbing that can get worse with movement. There are several effective ways of treating pain caused by bone metastases. You can read more about these below.

Prostate cancer cells can also spread to the bones of the spine (vertebrae). This can lead to a complication called metastatic spinal cord compression (MSCC) where the cancer cells press on the spinal cord. MSCC is rare. We do not know how many men with advanced prostate cancer develop MSCC, but we do know it happens in around five to ten out of every 100 people (five to ten per cent) with some form of advanced cancer.³ If it does happen you need to get treatment as soon as possible. Speak to your specialist team for more information about your risk.

MSCC may cause any of the following symptoms³:

• Pain in your lower, middle or upper back or neck that is severe or different from usual pain. The pain may get worse when you cough, sneeze, lift, strain, or go to the toilet, and it may wake you at night or stop you from sleeping.
• A narrow 'band' of pain around your stomach area or chest.
• Pain that moves down your arms or legs.
• Weakness in your arms or legs, difficulty standing or walking, or falling.
• Numbness or pins and needles in your legs, arms, buttocks, stomach area or chest, that does not go away.
• Problems emptying your bladder and/or bowel. You may be unable to empty your bladder and/or bowel, or you may have no control over emptying them.

These symptoms may also be caused by other conditions, but it is still important to get medical advice in case you do have MSCC.

MSCC is a serious condition. If you have any of the symptoms listed above, contact your specialist team straight away. Do not wait to see if it gets better and do not worry if it is an inconvenient time, such as the weekend. You should have been given information about who to contact if you have any symptoms. If you do not have any contact details, go to accident and emergency (A&E) at your local hospital and tell them that you have prostate cancer and the symptoms of MSCC.

We all react to pain differently. This means that only you can describe how your pain feels. Another person with the same illness may not feel pain in the same way as you do. Predicting how much pain you might have is difficult as pain is a very individual experience. If you are in pain, it is important to let your specialist team know. They can then plan your care to suit your individual needs. How much pain you have can depend on several factors, including:

• Where the pain is and what is causing it.
• How soon you tell your specialist team about the pain.
• Finding the right pain relief for you.
• Taking the right amount of pain-relieving drugs at the right times.
• Other factors such as tiredness, how well you are feeling, if you are anxious and whether or not you feel well supported with your pain.

You should not have to accept pain as a normal part of having cancer. Let your specialist team know about any pain you have as soon as possible. Do not worry that you are complaining too much about your pain or that you should put up with it. Pain will affect your quality of life if it is not properly controlled. The earlier you ask for help, the easier it will be to get your pain under control. With the right treatment and management, your specialist team should be able to control your pain effectively.

Until your pain is under control it may be very difficult to think clearly or believe that the pain will go away. Coping with any type of pain, whether it is constant or short-lived can be tiring. Some people say that they feel very angry or depressed about having pain. Anxiety can make pain worse, and feeling low may also make you more aware of your pain. It may be useful to get some extra help if you are feeling down, for example by talking to a counsellor. See below for more information about support.

Tiredness and fatigue can also be a big problem for men living with pain. If you are feeling very tired, speak to your specialist team or GP who will be able to give you some advice and support.

Your specialist team will ask you questions about your pain to try to get as much information about it as possible. This is important in finding the best treatment for you. You might find that keeping a diary to record your pain regularly helps you to describe it to your specialist team. Think about including the following information:

• Where is your pain?
• How bad is it?
• What does it feel like? For example, is it a stabbing pain, or a dull ache?
• When did the pain start? How often do you get it? How long does it last? Does it wake you at night?
• Does anything help? For example changing position or having a relaxing bath.
• Does anything make it worse? For example, moving around.
• How does your pain make you feel? For example, do you feel anxious or depressed? Does this affect the pain?

A good way of describing how much pain you are in is to rate it on a scale of zero to ten with zero being no pain and ten being the worst pain you can imagine.

A personal experience
"I kept a pain diary, this helped me keep track of when I had pain, how long it lasted and what made it better or worse. I took the diary to my appointment with me. This made it easier to talk about and describe my pain to the doctor."

Your specialist team will need to examine you to see if there are any obvious physical reasons for your pain. This will help them to decide whether you need any tests or investigations, such as blood tests or an X-ray.

The best way to manage your pain can depend on a number of things, including what is causing the pain, your general health, how you are feeling emotionally and what sort of things you do in your daily life. Because pain involves all of these things, treating it often involves using a few different approaches.

Pain may be a sign that your prostate cancer treatment is not working as well as it was. A different treatment may help the pain. Possible treatments include:

• Hormone therapy
• Steroids
• Chemotherapy

You may need treatment to help the pain itself such as:

• Pain-relieving drugs
• Palliative radiotherapy
• Medicines called bisphosphonates
• Other therapies, for example transcutaneous electrical nerve stimulation (TENS) machine

There are other things which may also help. These include:

• Complementary therapies
• Emotional support
• Treatments for other causes of pain, for example, antibiotic therapy can be very effective for pain caused by an infection

By using a combination of these, cancer pain can be managed well in most cases. Once treatment for pain has started it must be kept under constant review so that any changes can be managed as soon as they appear. If one type of treatment does not work for you, then your specialist team may be able to try something else. Tell your specialist team about any new pain. This may or may not be related to your cancer.

There are different health professionals who can help manage your pain, as well as your specialist team and GP. These include:

• A palliative care consultant who you may see at home or in hospital.
• Specialist cancer nurses, for example Macmillan nurses, can see you at home or in hospital. They provide expert advice about different types of pain relief and how to manage any side effects.
• A clinical psychologist may help you to deal with your pain.
• You may also be referred to a pain clinic where health professionals specialise in treating pain.

Most men who have pain caused by advanced prostate cancer will need to take pain-relieving drugs at some stage during their illness. There are different kinds of pain-relieving drugs. Your specialist team or GP may use a guide called a 'pain relief ladder'^{4 (shown below)} to decide which pain-relieving drugs will help you. The ladder recommends which type of drugs to give for which kind of pain.

By using this approach, your specialist team or GP can 'step-up' your drugs to the next stage if your pain is not controlled by one type of pain-relieving drug. You may be offered more than one type of drug, as they work in different ways. You may be taking pain-relieving drugs alongside other treatments such as palliative radiotherapy. If your pain improves after these treatments, your specialist team may be able to 'step-down' your drugs. This should not be done suddenly and you should be able to discuss the plan with your specialist team.

It is important that you take your drugs regularly, as prescribed by your specialist team or GP. This will give you more constant pain control. Do not put off taking pain-relieving drugs as this can make it more difficult to control the pain. Pain-relieving drugs do not become less effective the longer you take them. The drugs can take a while to be absorbed by the body and start working. If you wait until the pain comes back before you take the next dose, you may have a gap where your pain is not properly controlled. If the pain comes back before your next dose is due, let your specialist team know as this may be a sign that the dose needs to be changed.

All medicines can cause side effects. The most common side effects of pain-relieving drugs are described below. You may not get all or any of these. Check the patient information leaflet included with your medicines or speak to your specialist team or GP for more information about side effects.

These are mild pain-relieving drugs. They include paracetamol, and non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen. You can use them together with stronger pain-relieving drugs.

NSAIDs can help to reduce any inflammation that may be causing your pain. You should only take NSAIDs regularly if they have been prescribed for you. This is because taking NSAIDs for a long time can cause stomach irritation and stomach ulcers. Your specialist team may also prescribe medicines called proton pump inhibitors, which reduce the risk of stomach problems. Taking NSAIDs after food may help to reduce stomach irritation. You should avoid smoking and drinking large amounts of alcohol, as these can increase the risk of stomach ulcers. Your specialist team can give you more information about this.

You may need stronger pain-relieving drugs called opioids. These include morphine and weaker opioids such as codeine. You can take opioids in tablet and liquid form. Some opioids are also available as a skin patch. You may be able to take slow release opioids so that you do not have to take as many doses throughout the day. In some cases, your specialist team can give you a continuous dose of opioids through a needle into the skin. This means that the drug is less likely to wear off. You may use this method if it becomes difficult to take other pain-relieving drugs, for example, if you have problems swallowing and can no longer take medicine by mouth.

Possible side effects of opioids include:

• Difficulty emptying your bowels (constipation). This is a common side effect of opioids1 and can be very uncomfortable. Your specialist team may give you medicines (laxatives) that should make it easier to go to the toilet. Drinking plenty of water, eating a high fibre diet and exercising if possible, may also help to prevent constipation.
• Sickness. You may feel sick or be sick for the first few days of taking opioid drugs. If you feel sick, you should be prescribed anti-sickness tablets to stop this.
• Drowsiness. When you first start taking opioid drugs you may feel tired and drowsy. This usually improves after a few days when your body has become used to the drug. Ask your specialist team whether it is safe for you to drive when you are taking opioids.
• A dry mouth. Drink plenty of fluids. Chewing gum may also help.

Some men are worried about becoming addicted to stronger pain-relieving drugs like morphine. If you are taking morphine to relieve pain then addiction is unlikely.^{1, 6} Remember that you might not start with the strongest type of pain-relieving drugs, and the dose will be carefully controlled by your specialist team.

Men with advanced prostate cancer may be offered hormone therapy to shrink or slow down the growth and spread of the cancer. This may prevent and relieve your pain. Hormone therapy is often the first treatment used to manage pain. You can read our page on hormone therapy for more information.

If your hormone therapy is no longer controlling your cancer as effectively, other treatments are available to help delay or manage symptoms such as pain. For more information please read our page about treating prostate cancer after hormone therapy.

If other treatments such as hormone therapy are no longer working, you may be offered a low dose of steroids to treat your prostate cancer. Higher doses may be used to reduce pain.⁷ If your prostate cancer has spread to the bones or the spine, it may cause swelling and press on the nerves, causing pain. Steroids can help to reduce swelling around the cancer. You may be able to take steroids in combination with pain-relieving drugs and other types of treatment.

Like most medicines, steroids can cause side effects. These include:

• An increased appetite.
• Increased energy. Some people find that they feel irritable, as steroids can make your mind more active.
• You may put on weight and notice that your hands and feet are swollen. This is because the steroids cause water retention; it is the increased fluid that causes the weight gain.
• You may have a slightly higher risk of getting infections.
• Steroids can cause indigestion and may irritate the lining of the stomach, sometimes causing bleeding. You will need to take them after a meal or snack. Your specialist team may prescribe additional tablets to help to protect your stomach.
• Bone thinning (osteoporosis)
• Raised sugar levels in your blood and urine.

Your specialist team should discuss and monitor possible side effects with you. Do not stop taking steroids suddenly as this can make you very ill.

Your specialist team should give you a steroid treatment card which explains that you are taking steroids. You should carry this with you at all times. It should be shown to anyone treating you (doctor, nurse, dentist), whatever the reason, as it is important that they know that you are taking steroids.⁸

Chemotherapy involves using anti-cancer (cytotoxic) drugs to kill cancer cells. The aim of this treatment is to shrink the cancer cells and slow the growth of cancer. It does not cure prostate cancer but it can help with symptoms such as pain and improve your quality of life. Chemotherapy can cause side effects, including a sore mouth, and other medicines can help manage these.

Palliative radiotherapy can slow down the growth of cancer and help control symptoms in men with advanced prostate cancer. This is different from having radiotherapy to treat cancer that has not spread outside the prostate gland (localised prostate cancer). Palliative radiotherapy can shrink the cancer cells in the bones and stop them pressing on nerves and causing pain.

Bisphosphonates are drugs that treat pain caused by cancer that has spread to the bones. They do not treat the cancer, but they can help reduce pain. Bisphosphonates bind to areas of the bone that have been damaged by the cancer and slow down the breakdown of bone tissue.⁹ This helps to strengthen the bone and relieve pain. Like other drugs, bisphosphonates can sometimes cause side effects.

Reporting unuauls side effects: The Yellow Card Scheme
If you think you are experiencing a side effect from your medication that is not mentioned in the information leaflet that comes with it, then you can report it using the Yellow Card Scheme. This is run by the Medicines and Healthcare products Regulatory Agency (MHRA). They will investigate and if they find a problem with a medication then the MHRA will take action to protect the public. There are three ways you can report a side effect:

• Use the online Yellow Card form
• Ask your pharmacist for a Yellow Card form
• Call the Yellow Card freephone on 0808 100 3352

If there is an area of bone that has been badly damaged by cancer, surgery may be an option, although it is not often used. A metal pin or plate is inserted into the bone under general anaesthetic to strengthen and stabilise the area of affected bone. You may have radiotherapy following the operation to help prevent the cancer growing in that area.¹

Some NHS pain clinics and specialist teams may offer TENS to help manage pain. This involves sending small electrical currents to nerves in your body using a small machine. Doctors think that these currents may block the pain signals caused by the cancer. A very small study recently found that TENS could help some people with bone pain, but more research is needed into this.¹⁰

There are many different complementary therapies available including acupuncture, aromatherapy, massage, reflexology and hypnotherapy. Many people find that complementary therapies are helpful in coping with cancer pain. They can also help you to feel more in control of your treatment and that you are actively doing something to improve your health. However, there is little evidence to show that complementary therapies help relieve cancer pain, and we need more research into this.¹¹

Personal experience: "I have acupuncture and reflexology every week and they are the most effective pain relievers for me. Not only do they maintain suppleness but if I have a specific pain site they remove the pain within a short time."

Tell your specialist team about any complementary therapy you are having or are thinking about having to help with your cancer. Some complementary therapies have side effects and some may interfere with your cancer treatment. You should also tell your complementary therapist about any cancer treatments you are having.

When choosing a complementary therapy, make sure that the therapist is properly qualified and belongs to a professional body. Complementary therapy organisations such as the Complementary and Natural Healthcare Council will be able to give you more advice about finding a therapist. Some hospitals and cancer clinics also offer complementary therapies. Macmillan Cancer Support and Cancer Research UK provide more information about different types of therapies available and important safety issues to consider.

In addition to the treatments already mentioned, you may find some of the following ideas helpful:

• Generally looking after yourself, for example by maintaining a good diet or taking regular gentle exercise, may help you to feel better. Read our page about diet, exercise and prostate cancer for more information.
• Change your position frequently to stay as comfortable as possible and prevent stiffness.
• Hot or cold packs may help to relieve some types of pain. Wrap them in a towel so that they do not hurt your skin.
• Try listening to music, reading, watching television or chatting with a friend or family member to try and take your mind off your pain.
• Try relaxation techniques such as deep breathing, relaxation tapes or a relaxing bath.

These suggestions may help you to feel more comfortable and more in control of your pain.

As well as getting medical help to treat your pain, most men find it helps to get some emotional support. Feeling more in control of your emotions can help you feel better.

Close friends and relatives often say that it can be difficult to watch a loved one in pain. They can feel helpless and have trouble coping so they may also need emotional and practical support.

If you are feeling low or anxious, it may be useful to talk to a counsellor. Counselling may help you cope if you are experiencing pain.¹² You may be able to get a referral to a counsellor through your specialist team or GP.

You may find it helpful to speak to someone with personal experience of pain caused by prostate cancer. Our support volunteers are all personally affected by prostate cancer and are trained to listen and offer support over the telephone. There are also prostate cancer support groups throughout the country where you and your family can meet other people affected by prostate cancer. You can also join our online community. This is for men with prostate cancer and their families to share experiences, information and support.

You may also find that it helps to talk to your specialist team or a specialist cancer nurse such as a Macmillan or Marie Curie nurse. Many specialist nurses have counselling training and can help you work through some of your concerns. They also know a lot about cancer pain and how to manage it. Specialist nurses can also offer emotional support for you and your family. They work very closely with the district nurses and your GP. You can ask your GP or specialist team to refer you to these nursing services.

• What is causing my pain?
• Who will assess my pain?
• What treatments are available to help manage my pain?
• Will I need to take pain-relieving drugs?
• What are the side effects of pain-relieving drugs?
• What else can I do to help with my pain?
• Who else can I talk to about my pain?

British Association of Counselling and Psychotherapy (BACP)
Telephone: 01455 883300
Provides information and advice about finding qualified counsellors.

CancerHelp UK
Freephone: 0808 800 4040 9am-5pm, Mon-Fri
CancerHelp is the patient information website of Cancer Research UK and provides information about living with cancer.

The Complementary and Natural Healthcare Council (CNHC)
Telephone: 020 3178 2199
Provides details of complementary therapy practitioners who meet national standards of competence and practice.

Healthtalkonline
Watch, listen to or read personal experiences of men with prostate cancer and other medical conditions.

Macmillan Cancer Support
Freephone: 0808 808 00 00 9am-8pm, Mon-Fri
Practical, emotional and financial support for people with cancer, family and friends. Information about cancer, its treatment and living with cancer.

Maggie's Cancer Caring Centres
Telephone: 0300 123 1801
Cancer information and support centres located around the UK where people affected by cancer can drop in to access information and support services.

Marie Curie Cancer Care
Freephone: 0800 716 146 9am-5.30pm, Mon- Fri
Marie Curie run hospice centres throughout the UK and provide a nursing service for patients in their own home day and night, free of charge.

Pain Association Scotland
Freephone: 0800 783 6059 8am-4pm, Mon-Fri
Provides support to people living with pain and helps them to manage their pain.

Pain Concern
Helpline: 0844 499 4676 10am-4pm, Mon-Fri
Offers information and support for people with pain and those who care for them.

UK Council for Psychotherapy
Telephone: 020 7014 9955
Holds a national register of psychotherapists and counsellors and gives information to help you choose a therapist.

UK Prostate Link
The UK Prostate Link website helps you find and compare reliable online information about all aspects of prostate cancer.

References to sources of information used to produce this page:

1 Bader P, Echtle D, Fonteyne V, Livadas K, De Meerleer G, Paez Borda A, et al. Guidelines on pain management. European Urology Association. 2010.
2 Yuen KY, Shelley M, Sze WM, Wilt T, Mason M. Bisphosphonates for advanced prostate cancer. Cochrane Database of Systematic Reviews 2006, Issue 4. Art. No.:CD006250.
3 National Institute for Health and Clinical Excellence. Metastatic spinal cord compression. Diagnosis and management of adults at risk of and with metastatic spinal cord compression. 2008.
4 World Health Organisation. Cancer pain relief: with a Guide to Opioid Availability, 2nd ed. Geneva: WHO 1996.
5 Thompson JC, Wood J, Feuer D. Prostate cancer: palliative care and pain relief. British Medical Bulletin. 2007;83:341-354
6 Royal College of Physicians. Principles of pain control in palliative care for adults. [Consensus statement on the Internet]. London: Royal College of Physicians. 2000
7 National Institute for Health and Clinical Excellence. Prostate cancer: diagnosis and treatment. Full Guidance. 2008.
8 British National Formulary. Steroid treatment card. Available at: http://bnf.org/bnf/bnf/current/119642.htm. Accessed 23 December 2010.
9 Drudge-Coates L. Skeletal complications and the use of bisphosphonates in metastatic prostate cancer. International Journal of Palliative Nursing. 2006;12(10):462-469
10 A trial to see if a nerve stimulating machine called TENS can control bone cancer pain. Cancer research UK. Available at: http://www.cancerhelp.org.uk/trials/. Accessed 16 December 2010.
11 Bardia A, Barton D L, Prokop L J, Bauer B A, Moynihan T J. Efficacy of complementary and alternative medicine therapies in relieving cancer pain: a systematic review. Journal of Clinical Oncology. 2006 Dec 1;24(34)
12 Carr D, Goudas L, Lawrence D, et al. Management of cancer symptoms: pain, depression and fatigue. Systematic Review. Rockville: Agency for Healthcare Research and Quality. 2002

Reviewed by:

• Wendy Ansell, Macmillan Urology Nurse Specialist, St Bartholomew's Hospital, London
• Hilary Baker, Macmillan Uro-oncology Clinical Nurse Specialist, Buckinghamshire Healthcare Hospitals, Wycombe Hospital, Buckinghamshire
• Maureen Carruthers, Matron/CNS, Royal Marsden & Royal Brompton Palliative Care Service, London
• Lawrence Drudge-Coates, Urological Oncology Clinical Nurse Specialist & Honorary Lecturer, King's College Hospital, London
• Peter Kirkbride, Consultant Clinical Oncologist, Weston Park Hospital, Sheffield
• The Prostate Cancer Charity Support and Information Specialist Nurses
• Prostate Cancer Voices

Written and edited by:
The Prostate Cancer Charity Information Team