What is follow-up?

If you’ve had treatment that aimed to get rid of your prostate cancer, such as surgery, radiotherapy or brachytherapy, you will have regular check-ups afterwards. This is often called follow-up.

The aim of your follow-up appointments is to:

  • check how your cancer has responded to treatment
  • help you deal with any side effects of treatment
  • give you a chance to raise any concerns or ask any questions.

Is my cancer cured?

Although you’ve had treatment aimed at getting rid of your prostate cancer, your doctor or nurse won’t usually use the word ‘cure’. Instead they may say you’re ‘in remission’. This means there is no sign of cancer.

Unfortunately, your doctor or nurse can’t say for certain whether your cancer will come back. Each cancer is different and the success of your treatment will depend on many things. But they can tell you how you are doing and what is expected.

When and where will I have my appointments?

Your follow-up appointments will usually start two or three months after treatment. You will then have appointments every three to six months. Around two years after your treatment, you may start to have appointments less often. Each hospital will do things slightly differently, so ask your doctor or nurse for more details about how often you will have follow-up appointments.

If your treatment was part of a clinical trial, how and when you have follow-up appointments will vary. The research nurse or doctor will give you more information about your follow-up plan.

Where you have your appointments will depend on the services in your area and on your own situation. Follow-up appointments could be:

  • at the hospital where you had your treatment
  • at another hospital closer to where you live
  • at your GP surgery
  • on the phone to your doctor or nurse, rather than going to the GP surgery or hospital.

The place where you have your follow-up appointments may also change. For example, you might have your first few appointments at hospital and then be offered follow-up at your GP surgery.

Wherever you have your appointments, you should be given the details of someone to contact at any time if you have any concerns, such as new symptoms or side effects.

Telephone-based follow-up

If your PSA level remains stable six months after treatment, you might be able to have your PSA levels
checked remotely.

You’ll still have PSA tests done at the hospital or your GP surgery, but you won’t have to go back again to get your results. Instead, your hospital doctor, nurse or GP will telephone or write to you about the results, or just to let you know that they don't need to see you.

If your PSA rises, you will be given an appointment at the hospital to talk about what this might mean. 

Men often prefer this type of follow-up, as it means you can avoid going to hospital appointments when you're feeling well and don't have any concerns.

Your doctor or nurse will give you information about the possible side effects of your treatment, such as urinary problems or sexual problems, and any symptoms to look out for, as well as details of who to call if you notice any changes. You, or your doctor or nurse, can arrange an appointment at any point if you have any questions or concerns.

Self-management

At some hospitals, you may have fewer follow-up appointments, and be encouraged to take greater control of your own health and wellbeing. This is sometimes called self-management.

You may be able to see your results online and you may be given a support worker who will be your main contact during your follow-up care. You may also be invited to a workshop to develop the knowledge, skills and confidence to take care of your health.

Who will I see?

If you have your follow-up appointments at a hospital, you will see a member of your multi-disciplinary team (MDT). This is the team of health professionals involved in your care. You might hear it called your specialist team. You might not see the same person each time but they should have information about you. The team usually includes:

  • a specialist nurse
  • a urologist (a surgeon who specialises in problems with the urinary and reproductive systems)
  • an oncologist (a doctor who specialises in cancer treatments other than surgery, such as radiotherapy)
  • a radiographer (a health professional who specialises in helping to plan and give radiotherapy).

If you have your appointments at your GP surgery, you will see your GP or a practice nurse. If there is any sign of your cancer coming back, they will refer you back to the hospital.

Your main contact (key worker)

After your treatment there will usually be one person who is your main contact for your follow-up care. This might be your specialist nurse, hospital doctor, GP, radiographer, or another health professional. They are often called your key worker.

They help coordinate your care, answer your questions, and can help you get information and support. Make sure you know the name of your main contact and how to get in touch with them.

On this page when we talk about your doctor or nurse, we are usually talking about this main contact.

Remember, you can also call our Specialist Nurses for information and support.

What happens at a follow-up appointment?

Discussion with your doctor or nurse

At each appointment, your doctor or nurse will ask how you’ve been since your last appointment.

Tell them about any symptoms or treatment side effects you’ve had, as well as any other problems or concerns. You can tell them how you are feeling emotionally as well as physically. You can also discuss any practical problems you might have, such as problems at work or with day-to-day activities. You may be given a questionnaire about your physical, social, emotional and practical needs. You might hear this called a holistic needs assessment (HNA) form.

Your GP or hospital doctor or nurse can help you deal with side effects, or refer you to someone else who can. For example, if you have problems with leaking urine (incontinence), they might refer you to a continence service. Or if you have problems getting or keeping erections (erectile dysfunction), they can refer you to an erectile dysfunction (ED) service. They can also help you get support for emotional problems, such as feeling anxious or depressed, and practical problems, such as managing your finances.

You might feel embarrassed talking about some of the side effects of treatments, such as erection problems. But remember – doctors and nurses see people with these problems every day, so be as open as you can. They are there to help.

PSA test

The PSA test is a blood test that measures the amount of a protein called prostate specific antigen (PSA) in your blood. You will usually have one done a week or two before your appointment, so that the results are available at your check-up. You will be told when to make an appointment for the test. It might be done at your GP surgery or at hospital, depending on the services in your area.

You may be asked to avoid any vigorous exercise or ejaculating in the 48 hours before a PSA test, as this could cause a temporary rise in your PSA level.

Receiving anal sex or having your prostate stimulated during sex might also raise your PSA level. It might be worth avoiding these activities for a week before a PSA test.

The PSA test is a good way to check whether the treatment was successful at getting rid of your prostate cancer. A continuous rise in your PSA level can be the first sign that the cancer has come back. You can keep a record of your PSA levels in the appointment diary in our booklet, Follow-up after prostate cancer treatment: What happens next?.

Read more about PSA levels after different treatments.

Speak to your doctor or nurse if you think you’ve missed a PSA test, or if you are concerned about your
PSA level.

Tips to get the most from your follow-up appointments

Write down any questions or concerns beforehand

It is easy to forget what you want to say once you’re at your appointment.

Bring someone with you

It can be hard to take everything in at your appointments. Some people find it helpful to take someone with them, to listen and discuss things with later. If your appointment is on the phone, you could ask a friend or family member to listen with you.

Make notes

It can help to write things down during or after your appointment. There’s space for this in the appointment diary in our booklet, Follow-up after prostate cancer treatment: What happens next?

Ask to record your appointment

You could do this using your phone or another recording device. You have the right to record your appointment if you want to because it’s your personal data. But let your doctor or nurse know if you are recording them.

Ask for help

If there is anything bothering you, let your doctor or nurse know.

Ask for copies of any letters

If your appointment is at the hospital, ask for a copy of the letter that is sent to your GP. This will happen automatically at some hospitals. It will help to remind you of what was said at your appointment. If you don't understand the letter, call your main contact at the hospital or contact our Specialist Nurses.

What happens between appointments?

Contact your doctor or nurse if you have any concerns or get any new symptoms or side effects between your follow-up appointments.

It’s important to speak to them if you’re concerned about anything – don’t worry about them being too busy.
You can get support or advice over the telephone, or they might bring forward the date of your next
follow-up appointment.

How long will my follow-up last?

You will have follow-up appointments for some time after your treatment. Exactly how long will depend on your cancer, any side effects of treatment, and the services in your area. You will usually have appointments for several years.

After your follow-up appointments finish, you may continue to have PSA tests. Speak to your GP if you have any problems or concerns – they can refer you back to the hospital. Make sure you remind them about your prostate cancer, especially if it’s been a while since you had treatment or a PSA test.

Side effects of treatment

Treatments for prostate cancer can cause side effects, which might carry on after your treatment has finished. Some side effects can even start several months or years after treatment finishes.

Side effects will affect each man differently – you may not get all the possible side effects from your treatment.

Read more about:

Managing side effects

Side effects can affect your day-to-day life, but there are treatments for them, as well as things you can do yourself to manage them. It’s important to speak to your doctor, nurse or GP about them.

If you’re having problems with a side effect, you might have a meeting with your doctor or nurse to work out what support you need. They may refer you to someone who can give you more advice and support. 

Read more about managing the side effects of prostate cancer treatment.

The risk of your cancer coming back

For many men with localised or locally advanced prostate cancer, treatment is successful and gets rid of the cancer. But sometimes not all the cancer is successfully treated, or the cancer may have been more advanced than first thought. If this happens, your cancer may come back – this is known as recurrent prostate cancer. One of the aims of your follow-up appointments is to check for any signs that your cancer has come back. If your cancer does come back, there are treatments available that aim to control or get rid of the cancer.

Your doctor can’t say for certain whether your cancer will come back. They can only tell you how likely this is.

When your prostate cancer was first diagnosed, your doctor may have talked about the risk of your cancer coming back after treatment. To work out your risk, your doctor will have looked at your PSA level, your Gleason score and the stage of your cancer. If your prostate has been removed, it will have been sent to a laboratory for further tests. This can give a better idea of how aggressive the cancer was and whether it is likely to spread. If you don’t know these details, ask your doctor or nurse.

PSA levels after treatment

A continuous rise in your PSA level can be the first sign that your cancer has come back. This should be picked up by your regular PSA tests.

The exact change in PSA level that suggests your cancer has come back will depend on which treatment you had. Speak to your doctor or nurse about your own situation.

  • PSA level after surgery (radical prostatectomy)  

    Your PSA level should drop so low that it’s not possible to detect it (less than 0.1 ng/ml) at six to eight weeks after surgery. This is because the prostate, which produces PSA, has been removed. A rise in your PSA level may suggest that you still have some prostate cancer cells.

  • PSA level after radiotherapy or brachytherapy  

    After radiotherapy or brachytherapy, your PSA should drop to its lowest level (nadir) after 18 months to two years. Your PSA level won’t fall to zero as your healthy prostate cells will continue to produce some PSA.

    Your PSA level may actually rise after radiotherapy treatment, and then fall again. This is called ‘PSA bounce’. It could happen up to three years after treatment. It is normal, and doesn’t mean that the cancer has come back.

    If your PSA level rises by 2 ng/ml or more above its lowest level, this could be a sign that your cancer has come back. Your doctor will continue to check your PSA level and will talk to you about further tests and treatment options.

  • PSA level after high-intensity focused ultrasound (HIFU) or cryotherapy  

    Because HIFU and cryotherapy are relatively new, we don’t know so much about what PSA level can be a sign that your cancer has come back. But your PSA level should fall and then stay low after your treatment. Speak to your doctor or nurse about your own situation.

What symptoms should I look out for?

If your cancer does come back, the first sign is likely to be a rise in your PSA level, rather than any symptoms. And problems will often be side effects of treatment rather than a sign that your cancer has come back.

However, it’s important to let your doctor or nurse know if you do get any new symptoms or side effects, or are worried that your cancer might have come back. If your cancer has come back and has spread from the prostate to other parts of the body, it can cause symptoms, such as extreme tiredness (fatigue), bone pain and problems urinating.

Your doctor or nurse can help find out what might be causing your symptoms and help you manage any side effects. They can also look at your PSA level and do other tests to see whether or not your cancer might have come back.

What other tests might I have?

If your doctor or nurse is concerned about your PSA level or if you have new symptoms that suggest your cancer might have come back, they may recommend that you have some other tests, such as a prostate biopsyMRI scan, CT scan, bone scan or PET scan.

Your doctor or nurse will explain these tests to you if you need them, or you can get in touch with our our Specialist Nurses for more information.

 

Common thoughts and feelings

You may feel all sorts of things after you finish treatment. Some men are relieved and feel ready to put the cancer behind them and get back to normal life. But others find it difficult to move on. Adjusting to life after cancer can take time.

For some men, the emotional impact of what they have been through only hits them after they have finished treatment. You might feel angry – for example, angry at what you have been through, or about the side effects of treatment. Or you might feel sad or worried about the future.

Follow-up appointments can also cause different emotions. You might find it reassuring to see the doctor or nurse, or you may find it stressful, particularly in the few days before your appointments.

Worries about your cancer coming back

You may worry about your cancer coming back. This is natural, and will often improve with time. There are things you can do to help manage your concerns, such as finding ways to reduce stress. Breathing exercises and listening to music can help you relax and manage stress. Some people find that it helps to share what they’re thinking with somebody else, like a friend. If you are still struggling, you can get help for stress or anxiety on the NHS – you can refer yourself directly to a psychological therapies service or ask your GP.

If you’re worried about your PSA level or have any new symptoms, speak to your doctor or nurse. If your cancer does come back, you'll be offered further treatment.

Feeling isolated

During follow-up, you might find it difficult seeing your doctor or nurse less often than when you were having treatment. You might miss their regular support and reassurance. Some men say they feel isolated and abandoned when they finish their treatment. Speak to your GP if you have any concerns, or find out who else can help.

Dealing with side effects of treatments

Some men with long-term side effects find they only notice the emotional impact of these once their cancer treatment has finished. Getting support to manage your side effects can help. Our interactive How to manage guides have lots of practical tips to help you manage side effects, including fatigue, sexual side effects, and urinary problems.

Depression and anxiety

Men with prostate cancer may get depressed before or after treatment.

Depression can cause a variety of symptoms from feelings of unhappiness and hopelessness, to losing interest in the things you usually enjoy and feeling very tearful. Many people with depression also feel anxious or worried. These feelings can impact on your life and mean that you feel constantly tired, sleep badly and have no appetite. You may feel more angry and irritable than before.

If you notice these changes in yourself and they don't go away after a few weeks, speak to your GP, hospital doctor or nurse – there are things that can help.

Regular physical activity can help you deal with feelings of anxiety and depression. Learning ways to relax, such as yoga or meditation, might also help.

You can also talk things through with our Specialist Nurses. If you need to speak to someone immediately, ring the Samaritans.

Questions to ask your doctor or nurse

  • How often will I have follow-up appointments and where will they be?
  • What will happen at my appointments?
  • How will I receive my results?
  • Are there any side effects I might develop at a later date?
  • Is there anything I can do myself to manage side effects?
  • What is the risk of my cancer coming back?

Read about Mike and Martin’s approaches to life after treatment.

References and reviewers

Updated: July 2019

To be reviewed: January 2022

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  • List of reviewers  

    • Roshna Bhulia, Review Radiographer, North Middlesex University Hospital NHS Trust, London
    • Lisa Pickering, Consultant Medical Oncologist, St George's University Hospitals NHS Foundation Trust and the Royal Marsden NHS Foundation Trust
    • Debbie Victor, Uro-Oncology Clinical Nurse Specialist, Royal Cornwall Hospitals NHS Trust
    • Ann Williams, GP Partner, Chelmsford
    • Our Specialist Nurses
    • Our Volunteers.