Follow up after treatment for CUP

After treatment for cancer of unknown primary (CUP), you might have regular follow up appointments. Or you may decide to only have an appointment if you have any problems or develop a new symptom.

You usually have follow up appointments with your doctor or specialist nurse (CNS).

Why you have follow up appointments

You have follow up appointments to see how you are and if you have any problems or worries. You can talk about any side effects you might have from treatment, or if you have any new symptoms.

In some cases, where the aim of treatment was to cure the cancer, you might have follow up appointments to check for any signs of the cancer coming back.

How often are my check ups?

Whether you need check ups and how often you need them can vary, depending on your situation.

For example, you might see your doctor every 1 to 2 months for the first few years if you had treatment for cancer that spread to the lymph nodes in your neck.

Your doctor uses these appointments to check for signs that the cancer started in the head and neck area (the primary tumour). They can also check for signs of the cancer coming back. Some of these head and neck cancers can be cured.

For secondary cancer in other areas of the body, you might have check ups less often.

You might decide to only have an appointment if new symptoms develop. Your specialist nurse, doctor or GP can help you make decisions about this. They may refer you to a local symptom control team or palliative care team to support you and help you with symptoms, such as pain.

What happens at your follow up appointments?

Your doctor or specialist nurse usually examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects and if you are worried about anything.

You might have a CT or MRI scan every 3 months if your specialist thinks you are well enough and need further treatment. 

Depending on your situation, they might look for any signs of the cancer coming back. Or your doctor might continue to look for the site of the primary cancer. If it’s found, you may be able to have more treatment that could control your cancer for longer.

Tests you might have at follow up can include: 

• blood tests
• x-rays
• CT scans
• MRI scans
• PET scans

Between appointments

Many people find their check ups quite worrying. It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Your specialist nurse can also help support you and your family.

Many people find it helpful to take someone they trust to the follow up appointments. You may also find it useful to have counselling. 

You can also find people to share experiences with by using our online forum, Cancer Chat.