Living with advanced kidney cancer

In many cases this means your cancer cannot be cured. You may be offered treatments to try to slow your cancer down, or even stop it altogether for a while. You will need to talk very carefully to your own specialist to understand

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

There is more information on treating advanced kidney cancer in the treating kidney cancer section of CancerHelp UK.

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

At first, you are likely to experience a whirl of powerful emotions. Anger, fear, and sadness may come one on top of the other, leaving you exhausted. You may think you should be talking all this through with your partner, other family members or close friends. But you may find this impossible to do.

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 to help you work out how you are feeling.

You may find yourself wondering why you have the cancer. Is it something you have done, or not done? Asking "Why me?" and wondering if you could have prevented your illness is very common amongst people with cancer. Many people blame themselves for no real reason. It is not usually possible to tell exactly what has caused your cancer. Some cases may be linked to smoking. But lots of people smoke and do not get kidney cancer.

So again, why you? We do not know why some people get particular cancers and others who are exposed to the same risks (or more) do not. It just happens. This can be very difficult to deal with. You may feel you have to know why you have the cancer. But you may have to accept that there is no reason why. It may not be possible to blame it on anything you have or have not done in your life.

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 a diagnosis of advanced cancer helps them appreciate ordinary everyday things much more than they did. You will need to work out your priorities. Think about how you want to spend your time - what is important to you and what is not. Some of your future plans will no longer be realistic. But you do not have to abandon all your plans. You may be able to adapt some. And maybe get round to doing something you have always wanted to do, but were not able to make time for.

It is important that you feel as well as you possibly can. Ask your doctor or nurse about a referral to a Macmillan nurse (sometimes called a symptom control or home care nurse). A specialist nurse can work with you and your doctor to help control your cancer symptoms and improve your physical well being. Many have counselling training and can help you and your carers work through some of the emotions you are going through. If you are having any physical difficulties in coping at home your Macmillan nurse or a district nurse can talk to you about ways you may cope more easily.

Your Macmillan nurse or GP should be able to help you get grants for mobility aids (for example 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.

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, look in our general cancer information section  for counselling organisations and for organisations that can provide information about cancer and treatment. There are also details of cancer support groups where you can talk to other people who have cancer and may have had similar experiences.

Questions you may find difficult to ask

A diagnosis of advanced cancer means you will have all sorts of questions going around in your head that are not only difficult to answer - they are difficult to ask. We have tried to answer some of those questions here. But there will be more questions you can think of than we would ever be able to answer. Write your questions down and talk to your doctor or nurse. Or contact a telephone cancer information service and 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?
• How will I die?
• Why can't I have a transplant?
• How long will I live?

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 when the balance becomes too out of control, the body cannot cope and becomes overwhelmed.

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 Macmillan 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 of CancerHelp UK.

Pain can be a common symptom of cancer. But please be reassured that most people are able to have their pain kept well under control. There is now a large section on pain control and cancer on CancerHelp UK, which is part of our developing section on controlling symptoms of cancer and treatment.

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 it may be helping you fight it.

How long will I live?

It is very difficult for any doctor to answer this question for you. They can only guess at the answer, as they cannot see into the future any more than the rest of us can. For this reason, some doctors try to avoid giving you any estimate at all of how long you may live. Not everyone wants to know. But if it is very important to you to have some idea of how long you have, explain this to your doctors. Explain that you do not expect them to be completely accurate, but you would like them to give you some idea so that you can plan the time you have left.

The longer your doctors are treating you, the easier it becomes to estimate a likely prognosis. The doctors and nurses you see regularly will form a picture of how things are going for you. Over time, they should be able to give you some idea of how long you have left.