Pain and advanced prostate cancer

If prostate cancer spreads to the bone, it can damage or weaken it and may cause pain. Prostate cancer can spread to any area of bone around the body. It most commonly spreads to the spine. Pain in these areas can sometimes make it painful to walk and move around. The pain might remain in only one area, or spread to several parts of your body over time.

Bone pain is a very specific feeling. Some men describe it as feeling similar to a toothache but in the bones, or like a dull aching or stabbing. It can get worse when you move and can make the area tender to touch. Each man’s experience of bone pain will be different. The pain may be constant or it might come and go. How bad it is can also depend on where the affected bone is.

Nerve pain is caused by damage to a nerve, for example if the cancer presses on a nerve. The outer layers of bones contain nerves, and neuropathic pain can be a part of bone pain. The pain can come and go and people have described it as a shooting, stabbing, burning or tingling pain. For some people, the damaged area feels numb.

Sometimes damage to one part of your body is felt as pain in a different area. This is called referred or reflective pain. For example, cancer pressing on a nerve in the spine could be felt as a pain in the chest, arms or legs.

You may have a type of nerve pain called sciatica. Sciatica is caused by damage to one or more of the nerves that start in the spine and run down through the legs. People feel sciatica as pain, numbness, weakness, pins and needles or tingling in the lower back, buttocks, legs or feet. Sciatica can sometimes make it difficult to move the affected leg.

Sciatica is more likely to be caused by something other than your prostate cancer. But it’s still a good idea to have it checked out by your doctor or nurse.

If the cancer spreads to the lymph nodes it could lead to a condition called lymphoedema – caused by a blockage in the lymphatic system. But this isn’t very common. The lymphatic system is part of your body’s immune system, carrying fluid called lymph around your body. If it is blocked, the fluid can build up and cause swelling (lymphoedema).

Lymphoedema in prostate cancer usually affects the legs, but it can affect other areas, including the penis or scrotum (the skin around your testicles). Some men notice that the part of their body that is affected aches or feels tight or heavy. Prostate cancer itself can cause the blockage, and so can some treatments, such as surgery or radiotherapy. Lymphoedema can occur months or even years after treatment.

If you think you might have lymphoedema, speak to your doctor or nurse.

There might be a local lymphoedema service that your doctor or nurse can refer you to. Lymphoedema can cause discomfort or pain but there are treatments and things you can do yourself to help manage it, including eating a well-balanced diet.

You might get pain if you have metastatic spinal cord compression (MSCC). This happens when cancer cells grow in or near to the spine and press on the spinal cord.

MSCC isn’t common but it is serious. You need to be aware of the risk if you have advanced prostate cancer. Read more about metastatic spinal cord compression and what to look out for.

Your doctor or nurse will ask you questions about your pain to try to get as much information about it as possible. This will help them work out the best treatment for you. They might ask you the following questions.

• Where is your pain? Does it stay in the same place or does it move around?
• 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?
• Have you tried any pain-relieving medicines? Did they help?
• Does anything make it worse?
• How does your pain make you feel? For example, do you feel anxious or depressed? Does this affect the pain?
• How does the pain affect your daily life?
• Have you noticed any other symptoms associated with the pain? For example, numbness or weakness?
  

It may be useful to speak to your nurse, doctor, GP or someone else in your medical team. They can explain your diagnosis, the cause of your pain, possible treatment options, and any side effects. They can listen to your concerns, and put you in touch with other people who can help.

Make sure you and your family know who to contact if your pain suddenly gets worse. If you’re unsure, ask your doctor or nurse and keep the instructions somewhere close.

If you’re in a lot of pain, it can be difficult to think straight, so it may help to bring someone to the hospital with you to help talk to the doctor or nurse and to make notes for you.

You may be able to get support from your local hospice or community palliative care team.

Hospices don’t just provide care for people at the end of their life. They provide a range of services, including treatment to manage pain. They can also offer emotional and spiritual support, practical and financial advice, and support for families.

Some hospices provide day centres with services such as complementary therapy. Or you might be able to stay at the hospice for a short time while they get your pain under control. 

The community palliative care team can usually come and visit you at home if you prefer. Both teams will have doctors and nurses who can adjust the dose of your pain-relieving drugs and help get your pain under control.

Your GP, doctor or nurse at the hospital, or district nurse can refer you to a hospice service or community palliative care team. They will continue to work closely with these teams to support you. You can find out more about these services from Hospice UK, Macmillan Cancer Support and Marie Curie.

Read more about thinking and planning ahead, including hospice support.

Counsellors are trained to listen and can help you find your own ways to deal with things. Many hospitals have counsellors or psychologists who specialise in helping people with cancer – ask your doctor or nurse at the hospital if this is available.

You can also refer yourself for counselling on the NHS website, or you could see a private counsellor. To find out more, contact the British Association for Counselling & Psychotherapy.

Other things that might help include:

• our Specialist Nurses
• our one-to-one support service
• our online community
• support groups.

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• Vanessa Basketter, Urology Nurse Specialist, University Hospital Southampton
• Maggie Bingle, Prostate Cancer Clinical Nurse Specialist, East Suffolk and North Essex NHS Foundation Trust
• Our Specialist Nurses
• Our volunteers.