On this page:

• Who will I see at a follow appointment?
• How often will I have follow up appointments?
• What happens in a follow up appointment?
• What tests might I have during a follow up appointment?
• What is the process and general timeline of follow up tests?
• How can I make the most of my follow up appointments?
• What are the signs of a possible recurrence?
• More support and information

Follow up appointments are a normal part of your ovarian cancer treatment. It’s an opportunity for you and your team to talk about how you’re feeling, physically and mentally, after surgery and/or chemotherapy finishes. You can also discuss any physical changes you may have noticed following treatment as well as any psychological or practical concerns you may as a result of your diagnosis.  

Your team will be monitoring you to check if there are any signs of the cancer returning (a recurrence), but your appointment is about more than this. They will also monitor the ongoing impact the cancer has had on your life. This may include questions around menopausal symptoms, sleep issues or intimacy. It’s an opportunity for you to bring up any problems or challenges you're facing as result of diagnosis and treatment. Bringing a family member or friend to your appointment may help you emotionally and practically as they can take notes for you.

If you have any new symptoms or concerns between appointments, you don't need to wait for your next appointment. You can call or email your key worker (your CNS or other health care professional) whose contact details you have should have. They will be able to discuss your symptoms with you and plan what needs to be done. 

Who will I see at a follow up appointment?

Your follow up appointments will usually be with your oncologist. Depending on where you’re being treated in the UK you may also see your surgeon or CNS. Your appointment may be in-person or via the telephone.   

How often will I have follow up appointments?

Follow up appointments are usually more frequent in the first few years after a diagnosis. It varies depending on where you're being treated, but appointments tend to be every three months. If you're having maintenance treatments such as PARP inhibitors or bevacizumab, you will need regular blood tests to monitor for side effects:

• PARP inhibitors require blood tests once a month.  
• Bevacizumab requires blood tests, blood pressure readings, and a urine test every three weeks.

These tests are to review the impact of treatment and confirm it's safe to have the next cycle of PARP inhibitors and/or bevacizumab.

After your maintenance treatment finishes, you will still be followed up but the time between appointments may change. Your team will talk to you and explain how your follow up appointments will happen going forward. This may vary depending on where you're being treated in the UK so it’s important not to compare your follow up schedule to others.

Stage 1a and 1b: patient initiated follow up

Some hospitals may offer patient initiated follow up (PIFU) if you were diagnosed at an early stage (stage 1a and 1b). This is when, instead of routine follow up appointments, you contact your CNS if you experience any new symptoms. This is because early-stage ovarian cancer is less likely to recur. Your team will explain what this means for you. 

What happens in a follow up appointment?

Your oncologist/surgeon or CNS will ask how you're feeling, check whether you're experiencing any new symptoms and ask if anything is concerning you. They will also talk to you about side effects if you're on a maintenance treatment. 

A physical examination and other tests may be a part of your follow up. If you’ve had tests done before your appointment the results will be discussed with you.

If you’re on maintenance treatments, like PARP inhibitors and/or bevacizumab, it’s important to mention if you have any side effects because your doctor may need to look into what is causing them. They will also help you manage them.

You will be given 24-hour emergency contact for your cancer centre during your treatment which you should use for help and advice. 

What tests might I have during a follow up appointment?

Your team may use blood tests (including a CA125 test), a physical examination, CT scans and other tests to monitor your progress during follow up. Macmillan has information on different types of scans and tests used in cancer treatment and how they work.

If you're part of a clinical trial or on a maintenance treatment, you will get regular blood tests to check for side effects and may have your blood pressure measured and urine (wee) tested.

What is a CA125 blood test and how is it used for monitoring?

The CA125 test measures the amount of the CA125 protein in the blood. Everyone has a certain amount of CA125 in their blood. Usually, a normal level is under 35 units per millilitre (u/ml). CA125 levels may be raised because of ovarian, fallopian or peritoneal cancers, however the level can also be raised for other reasons such as uterine fibroids, menstruation or liver problems.

Your doctor may use a blood test to measure your CA125 level at your follow up appointment because a raised CA125 can be a sign that ovarian cancer is returning (recurring). They will look for a ‘trend’ in what's happening with your CA125 readings rather than acting on a one-off change in your levels.    

You can talk to your treatment team about how you want to receive these results. For example, you may be able to ask to be told only when there's a change in the general trend of CA125 levels or be told your exact CA125 level after each test.

CA125 levels are not a reliable marker for everyone. Some women may not have raised CA125 levels even when diagnosed with ovarian cancer, whilst others may have naturally high levels in their blood. If the CA125 blood test is not a reliable marker for you, then your team will tell you how they plan to monitor you. This may be by having CT scans and doing physical examinations.  

What happens if I have a raised CA125?

If you have a CA125 level that is gradually increasing, or remains raised over a period of time, your team may order tests to check whether the cancer has returned. These tests might include further blood tests, scans or other investigations depending on the symptoms you are experiencing. Once you have had these tests your medical team will talk you through the results.

Research has shown that starting treatment for a recurrence based only on a raised CA125 alone (without symptoms or signs of recurrence) isn't beneficial and doesn’t have an effect on how successful treatment is.

Instead, treatment for ovarian cancer recurrence is usually started once there are other signs that the cancer is growing. This includes persistent symptoms and/or scans (like a CT scan) showing the cancer growing. This is partly because one raised CA125 test result on its own isn't enough to prove that ovarian cancer has come back.