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Living with advanced kidney cancer

In most people, having advanced disease means that your cancer cannot be cured. You may be offered treatments to try to slow the growth of your cancer or shrink it down. These treatments can often control the cancer for months or sometimes years.

Finding out that you have advanced cancer, or that your cancer has come back, can be be a shock. At first, you are likely to have a whirl of powerful emotions. There is no set way of handling all this. You may need to try to put your own thoughts in order before talking to anyone else. Or you may want to talk straight away.

Coping with everyday life

It is important that you feel as well as you possibly can. You can ask about a referral to a symptom control nurse or home care nurse. They can work with you and your doctor to help control your symptoms and improve your well being. Many of these nurses have counselling training. They can also help you and your carers to work through some of the emotions you may have. 

Your nurse or GP should be able to help you get grants for some expenses related to your illness. They can also help you to claim benefits for yourself or your carer. It may also be helpful to see the hospital social worker.

Difficult questions

A diagnosis of advanced cancer means that you may have all sorts of questions about what will happen to you in the future. There are many people and organisations that can support you and answer your questions.  

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with kidney cancer section.

 

 

What advanced cancer means

For most people, advanced cancer means that it cannot be cured. You may be offered treatments to try to slow the growth of the cancer, or to shrink it down. These treatments can control the cancer for months or sometimes years. You will need to talk to your own specialist to understand

  • What the diagnosis means for you
  • What treatment is available
  • How treatment may help you

There is detailed information about treating advanced kidney cancer in the treating kidney cancer section.

 

Your feelings

Finding out that you have advanced cancer when you are diagnosed, or that your cancer has come back, can be a shock. You probably feel confused and may find it difficult to take in anything that is said to you.

At first, you are likely to have a whirl of powerful emotions. Anger, fear, and sadness may come one on top of the other, leaving you exhausted. You may want to talk all this through with your partner, other family members or close friends. But you may also feel upset and not able to do this at first. There is no set way of handling all this. Everyone copes differently and you need to do whatever feels most helpful to you. You may need to try to put your own thoughts in order before talking to anyone else. Or you may want to talk straight away to help you work out how you are feeling.

You are almost certainly going to feel very uncertain and anxious about the future. You may find it impossible to think about anything other than having cancer. Some people say that a diagnosis of advanced cancer helps them appreciate ordinary everyday things much more than they did. 

You may want to work out your priorities and think about how you want to spend your time. Some people find it helpful to look at what is important to them and what is not. Some of your future plans may no longer be realistic. But you don't have to abandon all your plans. You may be able to adapt some. And you may find that you can get around to doing something you have always wanted to do, but were not able to make time for in the past.

 

Coping with everyday life

It is important that you feel as well as you possibly can. You can ask your doctor or nurse to refer you to a symptom control nurse or home care nurse. The nurse can work with you and your doctor to help control any cancer symptoms and improve your physical well being. Many have counselling training and can help you and your carers to work through some of the emotions you may have.

If you have any physical difficulties in coping at home your home care nurse or a district nurse can talk to you about ways you may cope more easily. They can refer you to an occupational therapist. Occupational therapists are trained to help people with any sort of disability to manage day to day activities, such as dressing, washing or cooking.

 

Coping financially

Your nurse or GP should be able to help you get financial grants for equipment to help you move around (for example, handrails or a wheelchair), heating costs, holidays and other household expenses related to your illness. They can also help you to claim benefits for yourself or for the person caring for you. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

 

Finding information and support

If you know what to expect, you may find yourself less anxious and worried. Talk to your doctor or nurse about your illness and treatment. It is important to know all your options.

If you would like to talk to someone outside your own friends and family, you are welcome to contact the Cancer Research UK nurses. The number to call is freephone 0808 800 4040 and the lines are open from 9am to 5pm, Monday to Friday.

You can also look at our general cancer organisations page to find organisations that can give information about cancer and treatment. Our counselling section gives information about counselling and counselling organisations

You may also find it helpful to find a cancer support group where you can talk to other people who have cancer and may have had similar experiences.

If you want to find people to share experiences with online, you could use Cancer Chat, our online forum.

 

Questions you may find difficult to ask

A diagnosis of advanced cancer means you may have all sorts of questions going around in your head. These may be difficult to ask and difficult to answer. We have tried to answer some of those questions here. If you have other questions you can write them down and talk to your doctor or nurse. Or phone the Cancer Research UK nurses on freephone 0808 800 4040. You can talk your questions and worries through with them.

It is very common in any family for some people to want to ask difficult questions and some not. Try to respect this and give each other the space to ask as much as you want to. This may mean giving your doctor permission to talk to your next of kin alone. Or, if you are a relative, giving the patient time to talk to the doctors by themselves.

Below you will find answers to the questions

Why is the cancer fatal?

Unfortunately sometimes kidney cancer can’t be cured. But specialists are getting better at helping patients to live for longer and longer after their diagnosis.

Cancer can be life threatening because it is able to spread. Sometimes it isn’t diagnosed until after it has spread. The kidney is part of the body system that removes waste products from your body. Essentially, the kidneys filter and clean the blood. They remove chemicals that are left over from the breakdown of food, drugs and the normal chemical processes of the body. If your kidneys are not working properly, you will have a build up of toxins in your blood and this can quickly make you very ill. 

The kidneys also control the fluid balance of the body. You will eventually develop fluid overload if your kidneys stop working. This can affect your heart and lungs. 

Kidney cancer can spread to other parts of your body. If it gets into the bones, for example, this can further upset the body’s chemical balance. It may spread to the liver. This is the chemical factory of the body. Having cancer in your liver also means the chemical balance of the body is upset. Normally the body corrects these imbalances automatically. But if the chemical imbalance is too great the body cannot work properly any more.

How will I die?

When cancer is very advanced, the chemical balance of the body becomes completely upset. What often happens then is that you slip into unconsciousness. This is usually very near the end of your illness, maybe only a few hours or days before you die. Any symptoms you have before that should be able to be controlled, or at least helped, with treatment from your doctor and symptom control nurse. Talk to them about your fears. There is information about what happens in the last few days of life in the dying with cancer section.

Pain can be a common symptom of advanced cancer. But most people are able to have their pain kept well under control. There is information about pain control and cancer, which you may find helpful.

Why can't I have a transplant?

Organ transplant is rarely an option in treatment for advanced cancer. It is highly likely that some cancer cells will have broken away from the tumour and travelled to other parts of the body. These will continue to grow whether you have a transplant or not. Added to that, transplant patients have to take drugs to damp down (suppress) their immune systems and stop them rejecting the transplanted organ. Suppressing your immune system is not a good idea if you have a cancer, as the immune system may be helping you fight it.

How long will I live?

It is very difficult for any doctor to answer this question for you. The doctors and nurses you see regularly will form a picture of how things are going for you. It may not be possible for them to give a very accurate idea of how long you may live. But they can usually give some idea of your outlook and how the cancer may develop. This can help you to make plans.

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Updated: 15 January 2014