The Manual: Dealing with prostate cancer at the end of life

(Before you start reading this remember that if you have prostate cancer, it doesn’t mean you will die from it. Lots of men are successfully cured of prostate cancer – or have prostate cancer that doesn’t cause them any problems in their lifetime. However, if you do have advanced prostate cancer that is no longer responding to treatment and you’re looking for support and advice, we hope you find this article useful.)

How do I deal with the fact that I’m dying?

There is no one answer to this. You may have known for some time that your cancer can’t be cured. But being told that you are approaching the end of your life can be difficult to accept.

You’re likely to be dealing with lots of different emotions - fears about death, about dealing with the symptoms of your cancer, or about what will happen to your family after you have gone. You may find it hard to think about the future and find it hard to deal with gradually being able to do less. And you may feel like you should be strong – but find it harder to do this.

There’s no right or wrong way to feel or deal with your feelings but there is support available and ways that might help you cope. Planning to spend time with your loved ones and focusing on what is most important can help. Making plans, trying to keep some sense of normality and routine, taking each day as it comes and accepting there will be good days and bad days are all ways of dealing with this difficult time.

Sorting out problems can also help to reduce fears and anxiety. For example, if you are having problems with symptoms, get help from your medical team to get them under control. If you are worried about having symptoms such as pain in the future, speak to your doctor or nurse. They can explain what they will do to control this.

Putting your affairs in order can also reassure you that your family will be properly looked after when you’re no longer around. You can find out more about this, including making a Will and thinking about your funeral in our booklet, Advanced prostate cancer: Managing symptoms and getting support.

Where can I get support?

You might find it helps to talk openly to your family about your cancer, and your death. This can be very hard – especially if you feel that you’re the one having to start difficult conversations. But it can help both you and them deal with difficult feelings.

If you don’t want to talk to those close to you, you might find it easier to talk to someone else. Talking to your medical team can help. Your local hospice may have services to help you deal with difficult feelings. They can also support your family.

There are quite a few specialist organisations and websites that offer advice, information and support during this time, including: Macmillan Cancer Support, Hospice UK, Marie Curie, Carers UK, Compassion in Dying, Citizens Advice Bureau, Age UK and Disabled Living Foundation.

You can also speak to our Specialist Nurses who have the time to listen and talk through any problems you’re having – either physically or emotionally.

Why can’t my doctor tell me how long I’ve got to live?

It’s hard for your doctor to be sure how long you will live and they may be reluctant to give you an exact timescale. They may be able to give you an estimate but you may live longer or, unfortunately, you may live for less time than this. Although the future is uncertain, for many people it’s important to plan ahead and make the most of the days when you feel well.

What will happen in the last weeks, days and months?

Every man will have a different experience at the end of his life.

The burden of cancer on the body can cause a number of symptoms. Bone marrow may not be able to make enough red blood cells, which can cause anaemia. Cancer can affect your ability to get energy from food, which can make you feel weak. Sometimes organs, like the kidney and liver may not work so well, which can mean you get a build up of waste products in your blood. In the later stages of the disease you may feel drowsy and drift in and out of consciousness.

However, it’s important to know that you may not experience all or any of these effects. And if you do, there are things your medical team could do to help relieve symptoms and make you comfortable.

Macmillan Cancer Support and Marie Curie also provide information about what will happen in the last few weeks and days of life.

Will I be in a lot of pain?

Pain is something that men often worry about but not all men will experience pain.

Advanced prostate cancer can cause pain in the areas it has spread to, such as the bones but there are treatments that are very effective at relieving or reducing pain.

If you’re in pain, or your pain relief isn’t working as well as it was, tell your doctor or nurse. It’s important that you’re honest with them about your pain so that they can get it under control. You shouldn’t have to accept pain as a part of having cancer. The earlier you ask for help with pain, the easier it will be to get it under control. Read more about how pain is controlled.

How can I try and make sure the end of my life is how I want it to be?

It’s a good idea to think about what care you would like to receive in the future. This may make things easier for you and your family. It is called advance care planning. You can make something called an advance care statement or an advanced decision. It can include some of the following:

• your wishes and preferences about the type of care you want 
• whether you would refuse treatment in specific circumstances 
• who you would like to be asked for a decision about your care, if you are unable to make it yourself 
• where you would like to be cared for – for example, at home, in a hospice or hospital
• where you would like to die

These can be very difficult decisions to think about. You don’t have to make any decisions if you don’t want to. But it can be helpful to think about these things early on as it helps your doctor or nurse to plan your care according to your wishes. They will discuss these issues with you and should keep a record of your decisions. But it’s a good idea to keep a record of your decisions yourself, and talk about them with your family too. Although it might be very hard, talking to those close to you about your wishes means they can help make sure they are carried out.

Find out more from Dying Matters. If you change your mind at any time then you can change your plans or cancel them.

Compassion in Dying also have more information about making an advance decision and Age UK have a fact sheet, Advance decisions, advance statements and living wills.

Can I stay in my own home?

It’s important that you get the care you need, are comfortable and your pain is controlled. Where you will be will depend on a number of things, including your own wishes, the amount of help you have and your local services.

Lots of people would choose to die at home and there are health professionals and organisations who provide care, equipment and help at home, so you and your carers get practical and emotional support to help you do this.

At some point, you may decide that you need to be cared for in a hospice, nursing home or hospital. You may have the option to spend a short time in a hospice or hospital and then come home again or go to a hospice day service.

Read more about choosing where you want to be looked after.

What can I do to manage my symptoms?

There are several symptoms that men with advanced prostate cancer might get. These include fatigue, pain and urinary problems. Whether you are at home, in a hospice or in hospital, you should have help to manage any symptoms you are experiencing. Read more about the symptoms of advanced prostate cancer and ways to manage them.

What practical things should I
sort out?

It’s natural to find it difficult and upsetting to think about the future. But you might find that making plans helps you feel more prepared for what the future may hold, and reassured about the future for your family. It’s a good idea to make sure you’ve made a Will and you may want to think about what you do with things like your bank account and pension scheme. You may also want to do things like plan your funeral, but not everyone will want to do this.

Sources

Some of the information in this article has been sourced from Macmillan Cancer Support’s end of life information, where you will find a lot more detailed information about what to expect and the support available.