Coping with advanced kidney cancer

Advanced or metastatic kidney cancer means that the cancer has spread away from the kidney. It may have already spread when you are first diagnosed. Or the cancer may have come back sometime after treatment.

Unfortunately advanced kidney cancer is unlikely to be cured. But treatment can often control the cancer and help to relieve symptoms. Your doctors and nurses can talk to you about what treatment options are available and what the aim of the treatment is.

Coping with advanced cancer can be extremely difficult. Talking to others can help. As well as family and friends, there are plenty of people at the hospital and in your community who can help support you.

How you might feel

Finding out that you can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal to not be able to think about anything else.

Lots of information and support is available to you, your family and friends. Some people find it helpful to find out more about their cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

• what your diagnosis means
• what is likely to happen
• what treatment is available
• how treatment can help you

Talking about advanced kidney cancer

Specialist nurses

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their number.

Family and friends

Your family and friends might be able to support you and talk to you about your cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.

If you find it easier to talk to someone other than your family and friends, you may prefer to speak to a counsellor.

Spiritual support

Some people find great comfort in religion. You might find it helpful to talk to:

• a local minister
• a hospital chaplain
• a religious leader of your faith

Cancer Chat

Chat to other people affected by cancer in our online forum. Our friendly team of moderators and nurses are also on hand to support you.

Physical effects

Advanced kidney cancer is likely to cause changes inside your body that affect how you feel physically. These can depend on where the cancer has spread to (secondary cancer). They might include:

• feeling very tired (fatigue) and lacking in energy a lot of the time
• weight loss
• pain
• feeling short of breath or having trouble breathing

Coping with everyday life

It is important that you feel as well as you possibly can. If you have any symptoms, tell your doctor or nurse so they can help you get the treatment you need to relieve them.

Symptom control nurses are specialist nurses who can work with you and your doctor to help control any cancer symptoms. They can also help to improve your physical and emotional well being. Symptom control nurses are sometimes called palliative care nurses or home care nurses.

If you don’t already have a symptom control nurse ask your specialist, GP, or hospital nurse to refer you. Some symptom control nurses will take direct referrals from patients or relatives.

Many symptom control nurses have counselling training and can help you and your carers work through some of your emotions. If you have physical difficulties that make it hard to cope at home, your specialist nurse or a district nurse can talk to you about what may help you.

Coping financially

You might have extra expenses due to the cancer. Your specialist nurse or GP can help you get grants for heating costs, holidays or household expenses related to your illness.

Ask to see a social worker. They can let you know which benefits or grants you can claim and help with the claiming process.  

Support at home for you and your family

You can get emotional and practical support through your hospital, local hospice and GP surgery. You can also get help from charities and support groups.

GP

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

Community or district nurses

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment, such as commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community specialist palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Questions you may find difficult to ask

Planning

Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.

Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.