What is 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.
The aim of your follow-up appointments is to:
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 tell you 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.
Your follow-up appointments will usually start two or three months after treatment. You will then have appointments every three to six months. Three years after your treatment, you may 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:
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.
If your PSA level remains stable two years 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 or GP will check your results and telephone you or send them to you in a letter.
Many men like getting their PSA test results this way, as it means they have fewer appointments.
If your PSA rises, you will be given an appointment at the hospital to talk about what this might mean. You can also ask to see your doctor or nurse at any time if you’re worried or have side effects from your treatment, such as urinary problems or sexual problems.
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. The team may include:
If you have your appointments at your GP surgery, you will see your GP or a nurse. If there is any sign of your cancer coming back, they will refer you back to the hospital.
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.
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 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.
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.
If you are gay, bisexual or a man who has sex with men, being the receptive partner during anal sex might raise your PSA level for a while. 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?.
Speak to your doctor or nurse if you think you’ve missed a PSA test, or if you are concerned about your PSA level.
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. You might also be offered a PET (positron emission tomography) scan, which is another type of scan used to check if cancer has come back after treatment.
They may also recommend you have these tests if you have new symptoms that suggest your cancer might have come back. Your doctor or nurse will explain these tests to you if you need them, or you can get in touch with our Specialist Nurses for more information.
It is easy to forget what you want to say once you’re at your appointment.
It can be hard to take everything in at your appointments. You might find it helpful to take someone with you, 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.
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?. Or you could ask to record the appointment, for example on your phone.
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. It will help to remind you of what was said at your appointment. If you don't understand the letter, you can contact our Specialist Nurses.
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.
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 will affect each man differently, and you may not get all the possible side effects from your treatment.
Read more about:
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.
For many men with localised or locally advanced prostate cancer, their treatment is successful and gets rid of their prostate 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.
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.
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.
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, or if it rises for three or four PSA tests in a row, 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.
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. Advanced prostate cancer (cancer that has spread from the prostate to other parts of the body) 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 to see whether or not your cancer might have come back.
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.
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.
If you’re worried about your PSA level or have any new symptoms, speak to your doctor or nurse.
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.
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.
Some men with prostate cancer feel anxious and may become depressed, even after treatment has finished. If you’re depressed you may feel low, feel bad about yourself, or not want to do things. Some men who are depressed find they get angry more easily, start drinking more alcohol, and stop taking care of themselves.
If you often feel uneasy, have difficulty sleeping or can’t concentrate, this could be a sign that you are feeling anxious.
If you have these kinds of feelings, there are things you can do to help yourself and people who can help. Speak to your GP or doctor or nurse. If you need to speak to someone immediately, you could contact the Samaritans.
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Updated: November 2015 | Due for Review: November 2017