Follow up for kidney cancer

You have regular appointments at the hospital after treatment for kidney cancer. This is called follow up. You may also have CT scans and blood tests.

You usually have follow up appointments for a few years after treatment. If there are no signs of the cancer coming back, you have fewer appointments each year.

Why you have follow up appointments

Follow up appointments are to check:

• your recovery after treatment and if you have any side effects
• whether the cancer has come back
• if you have any questions or worries

You usually have follow up appointments with your doctor or specialist nurse (CNS). You might have these over the telephone unless you need to see your doctor or CNS in person.

It is important that you do not miss your monitoring scans and follow up appointments. Make sure you know who to contact if you need to change the date or need help getting to the hospital.

If you move out of the area:

• tell your old hospital as soon as you know where you are moving to – depending on where you are going, they might be able to transfer your care to a nearby hospital
• tell your new GP that you are being followed up for kidney cancer
• keep hold of the contact details for your specialist nurse (CNS) at the old hospital – you may need to talk to them about getting your information to your new doctor
• make sure your contact details are up to date

Follow up after surgery

You may have a telephone call from your specialist nurse when you go home after surgery. This is to make sure you’re recovering well from your operation and have no immediate problems.

Your first follow up appointment with your surgeon is usually about 6 weeks after you leave hospital. They check how you are and explain the results of the tests on the cancer. They should be able to tell you the type of kidney cancer it is and how it might behave (the grade).

They may also refer you to another specialist doctor called an oncologist if you need treatment to reduce the chance of the cancer coming back. This is called adjuvant treatment.

How often are follow up appointments?

You have regular follow up appointments for several years after treatment. These may be a mix of telephone and face-to-face appointments, depending on your hospital.

How often you have follow ups and CT scans can vary between hospitals. It also depends on what treatment you've had and the risk of the cancer coming back.

Your doctor looks at many factors to decide on the risk of the cancer coming back. These include:

• the size of the cancer
• changes in the cancer cells (called sarcomatoid features)
• if any lymph nodes contain cancer cells
• what the cancer cells look like (the grade)

The higher the risk of the cancer coming back, the more often you have appointments and scans. These are normally CT scans of your chest and tummy (abdomen). 

You normally have a follow up appointment with your doctor for every CT scan. Sometimes your doctor may want to see you more often.

You usually have regular CT scans for at least 5 years after surgery. Your doctor then decides if you need any more. Or if you can have the follow ups without the scans.

After the scans stop, you may be able to have follow ups with your GP.

Below is a general guide as to how often you might have follow up appointments and CT scans after treatment for kidney cancer. Your doctor will talk to you about your own situation.

Low risk of cancer coming back

If the risk of the cancer coming back is low, you might have a CT scan and follow up:

• 6 months after treatment
• yearly for next 2 years
• then once every 2 years

Intermediate risk of cancer coming back

If the risk of the cancer coming back is intermediate (between low and high), you might have a CT scan and follow up:

• every 6 months for the first year
• once a year for the next 3 years
• then once every 2 years

­­­­­­­High risk of cancer coming back

If the risk of the cancer coming back is high, you might have a CT scan and follow up:

• every 3 months for the first 6 months
• every 6 months for the next year and a half
• once a year for the next 3 years
• then once every 2 years

Advanced cancer

If you have advanced cancer, or you weren't able to have the cancer completely removed, you and your doctor will decide together how often you need to see them or your specialist nurse. This will depend on any treatment you may need to help control the cancer or any symptoms you have.

Between appointments

What happens at your follow up appointment?

Your doctor will:

• examine you

• check your lymph nodes and abdomen

• listen to your chest

They do this to look for signs of the cancer coming back or spreading. You will also have some tests to check how well your kidneys or remaining kidney are working.

Your doctor will also ask you how you are feeling. It's important you tell them about any worries or concerns you have.

You will also have the chance to ask questions. You might want to write questions down as you think of them and take them with you.

How you may feel

Some people find it very stressful to know they need follow up for cancer. And having scans after treatment has finished can make some people anxious. You can talk this through with your doctor or specialist nurse. They can:

• help reassure you
• explain how often you'll have follow ups
• explain why you're having follow ups as often as you are
• tell you about any support groups

It can help to tell someone how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling during or after cancer treatment.

What you can do for yourself

Having to fit in lots of tests and appointments may be difficult. It may feel like they're ruling your life. But there are things you can do to help you feel more in control. These include: 

• understanding your illness
• keeping healthy
• getting help and support