Follow-up after treatment

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
  • deal with any side effects of treatment 
  • give you a chance to raise any concerns or ask any questions. 

After your treatment there will usually be one person who is your main contact for your follow-up care. They might be your specialist nurse, hospital doctor, GP radiographer, or another health professional. You may hear them called your ‘key worker’. You will be given details of who your main contact is and how to get in touch with them. When we refer to doctor or nurse here, we mean this main contact.

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Is my cancer cured?

Your doctor or nurse won’t usually use the word ‘cure’. Instead they may say that you’re ‘in remission’. This means that there is no sign of cancer at that time.

Unfortunately, your doctor or nurse can’t tell you whether your cancer is going to come back. Each cancer is different and it depends on many things. But they can tell you how you are doing and what is expected.

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When and where will I have my appointments?

You will usually have your first appointment between six weeks and three months after treatment. To begin with, you might have appointments every three or four months. After this, they could be every six months. After two years, you might have check-ups once a year. But your appointments might be more frequent than this, so check with your doctor or nurse.

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

  • at hospital
  • at your GP surgery
  • on the phone to your doctor or nurse, rather than the GP surgery or hospital.

If your PSA level remains stable a year or two after treatment, you might be monitored remotely. This means that you won’t have appointments with anyone. Instead, you’ll be sent a letter when you need to have a PSA test done. The results of the test will be checked by the hospital or your GP. You’ll also be sent a letter with the results. If your PSA rises, you will be sent an appointment at the hospital.

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

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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, the 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 might continue to have PSA tests. And you can speak to your GP if you have any problems or concerns – they can refer you back to the hospital.

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What happens at a follow-up appointment?

Your doctor or nurse will talk to you about how you’ve been since your last appointment. Tell them about any treatment side effects or symptoms you’ve had, as well as any other problems or concerns. You can tell them about how you are feeling emotionally as well as physically, and about any practical problems you might have.

PSA test

You will usually have a PSA test a week or two before your appointment, so that the results are available at the appointment. You will be told when to make an appointment for the test.

PSA tests are a very effective way of checking how successful your treatment has been. A continuous rise in your PSA level can be the first sign that the cancer has come back.

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

Other tests

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

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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

There can be a lot to take in at your appointments.

  • Make notes

It might be useful to write things down during or after your appointment.  Or you can ask if you can record the appointment, on your phone for example.

  • Don’t be afraid to ask for help

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

  • If your appointment is at the hospital, ask for a copy of the letter that is sent to your GP

You might be sent it automatically. It will help to remind you of what was said at your appointment. If you have any problems understanding the letter, you can call our Specialist Nurses.

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What happens between appointments?

Get in touch with your doctor or nurse if you’re worried about anything or develop any new side effects or symptoms between your follow-up appointments. Don’t worry about them being too busy. You might be able to get support or advice over the telephone, or bring forward the date of your next appointment.

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What symptoms should I look out for?

There are certain symptoms that can be a sign that your cancer has come back. But they can also be caused by other things, like an enlarged prostate or urine infection. Or they can be side effects of treatments.

Symptoms to look out for include:

  • blood in the urine or semen
  • needing to urinate more often, especially at night – for example if you often need to go again after two hours
  • difficulty starting to urinate
  • a weak flow of urine and straining to go
  • taking a long time to finish urinating
  • a feeling that your bladder hasn’t emptied properly
  • needing to rush to the toilet – you may occasionally leak urine before you get there
  • dribbling urine
  • pain when urinating
  • persistent aches and pains in your bones that last more than a week
  • continuous pain in the pelvic region – the area below your stomach
  • unexplained weight loss
  • swelling in your legs.

If you get any of these symptoms, it’s a good idea to get them checked out, so let your doctor or nurse know. They’ll look at your PSA level and any other test results to confirm whether or not your cancer has come back. A rise in your PSA level will usually be the first sign that cancer has come back, rather than symptoms.

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Side effects

Side effects might carry on after your treatment has finished. Some side effects can even start several months or years after treatment finishes, including some of the side effects of radiotherapy.

Side effects can affect your day-to-day life, but there are treatments for them, as well as things you can do to manage them. Speak to your doctor, nurse or GP about them. They can refer you for further help.

What side effects might I get?

Extreme tiredness (fatigue)

Fatigue is extreme tiredness or exhaustion, which makes it hard to carry out your daily activities. It might be caused by any prostate cancer treatment. Fatigue might improve after your treatment has finished but some men find it lasts longer.

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What can I do to help myself?

There are things you can do yourself to look after your own health, for example, eating a healthy diet and being physically active. This is sometimes called self-management. Find out more in our booklet, Living with and after prostate cancer: A guide to physical, emotional and practical issues. You can also ask your doctor or nurse for advice.

Some hospitals have cancer information centres where you can get information. Some hospitals also run courses for people living with or after cancer. Macmillan Cancer Support and Maggie’s Centres also run courses.

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Common thoughts and feelings

You may feel all sorts of things after you have finished treatment.

  • Some men are relieved. But others find it difficult to move on. Adjusting to life after cancer can take time.
  • For some men, it’s only after they have finished treatment that the emotional impact of what they have been through hits them.
  • Follow-up appointments can trigger different emotions. You might find it reassuring to see the doctor or nurse, or you may find the appointments stressful, particularly in the few days beforehand.
  • You may worry about your cancer coming back. This is natural, and will often improve with time.
  • Some men describe feeling isolated and abandoned when they finish their treatment. You might find it difficult seeing your doctor or nurse less often than when you were having treatment, and miss their regular support and reassurance.
  • Some men find that the impact of the side effects only sinks in once their treatment has finished.
  • Some men with prostate cancer get depression and anxiety, even after treatment has finished. Being depressed doesn’t always mean being tearful or low. Some men find they get angry more easily, start drinking more and stop taking care of themselves.

What can help?

There are different ways to deal with this period of change. Go easy on yourself and don’t expect to have all the answers. Some men deal with things on their own, but plenty of others make use of the support that’s on offer. If you are finding things hard, you can ask for help – from someone you know or from people trained to help.

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What is the chance of my cancer coming back?

Many men have their cancer successfully treated. But there may be a chance of it coming back (recurrent prostate cancer). One of the aims of your follow-up appointments is to check for any signs of this.

Your doctor can’t say for certain whether your cancer will return. They can only tell you how likely it is. When prostate cancer is diagnosed, it’s often divided into risk groups. This is the risk of the cancer coming back after treatment.

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How will I know if my cancer has come back?

A rise in your PSA may be the first sign that your cancer has come back. If you have any of the symptoms, let your doctor or nurse know. These can be a sign that the cancer has come back – but they are often a side effect of treatment, or caused by something else which has nothing to do with your cancer, such as an enlarged prostate.

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

PSA level after surgery

After surgery, your PSA level should drop to an undetectable level, usually less than 0.1ng/ml. This is because the prostate gland, which produces PSA, has been removed. If your cancer has returned, there would be a measurable amount of PSA which rises over time.

Some hospitals use ‘super sensitive’ PSA testing, which can measure PSA levels as low as 0.01ng/ml or 0.02ng/ml. This may be able to detect signs that the cancer has come back at a very early stage. If a hospital uses super sensitive PSA testing, they will have their own guidelines of what an undetectable PSA level is. This is a fairly new way of measuring PSA, and it is not available in all hospitals.

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. Some PSA will still show up in tests because healthy prostate tissue will continue to produce it. Sometimes men may have a rise and fall in PSA around one to two years after treatment. This is called ‘PSA bounce’. It is normal, and doesn’t show that the cancer has come back. A sign that your cancer may have returned is if your PSA level has risen by 2ng/ml or more above its lowest level, or if it has risen for three or four PSA tests in a row.

If you had hormone therapy before radiotherapy or brachytherapy, your PSA level should drop to a lower level quite quickly. If you continue to have hormone therapy after radiotherapy, your PSA level may continue to fall further. There may be a small rise in PSA after you finish the hormone therapy. This is normal and does not mean that your cancer has come back. However, a rise of more than 2ng/ml from your lowest level may suggest that your cancer has come back. But even if your PSA does rise this much, your doctor may want to know how quickly (or slowly) it is rising. In this case you may have your PSA monitored for at least six months before deciding on a treatment.

PSA level after HIFU or cryotherapy

Because these treatments are relatively new, we don’t know so much about what level of PSA might indicate that your cancer has come back. Speak to your doctor or nurse about your own situation.

If your cancer does come back, there are other treatments you can have which aim to control or get rid of it. Speak to your doctor or nurse about your options.

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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?
  • Who will I see at my appointments?
  • Who do I contact with questions or concerns between my appointments?
  • Who will help manage my side effects?
  • 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?
  • What rise in PSA might suggest my cancer has come back?

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

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