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

You have follow up appointments to see how you are and if you have any problems or worries. You can talk to them 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 during the 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.

Depending on your situation, they might look for any signs of the cancer coming back. You might have tests at some visits, including:

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

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.

Between appointments

Contact your GP, your cancer doctor or specialist nurse if you have any concerns between appointments. You should also contact them if you notice any new symptom. You don’t have to wait until your next booked appointment.

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.

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.
  • Metastatic malignant disease of unknown primary origin in adults: diagnosis and management
    The National Institute for Health and Care Excellence (NICE), 2010

  • Cancers of unknown primary site: ESMO clinical practice guidelines for diagnosis, treatment and follow up
    K Fizazi and others
    Annals of Oncology, 2015. Vol 26, Supplement 5

  • Cancer and its Management (7th edition)
    J Tobias and D Hochhauser
    Wiley-Blackwell, 2015

  • Cancer: Principles and Practice of Oncology (10th edition)
    VT DeVita, TS Lawrence, SA Rosenberg
    Lippincott, Williams and Wilkins, 2015

Last reviewed: 
03 Jun 2021
Next review due: 
03 Jun 2024

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