Active surveillance is a way of monitoring prostate cancer which aims to avoid unnecessary treatment in men with less aggressive cancer. Prostate cancer can often be slow growing and, for many men, it may never progress or cause any symptoms. In other words, many men with prostate cancer may never need any treatment.¹

Treatments for prostate cancer may cause side effects which can affect your quality of life. By monitoring the cancer with regular tests, you can avoid or delay these side effects. The most common side effects are problems getting and keeping an erection (erectile dysfunction) and leaking urine (incontinence). For more information about the side effects of each treatment, read our Treatment choices pages.

Active surveillance involves monitoring your prostate cancer with regular tests, rather than treating it straight away. The tests aim to find any changes that suggest that the cancer is growing. If any important changes are found then treatment can then be offered at an early stage, with the aim of getting rid of the cancer completely.

Monitoring varies from hospital to hospital but if you choose active surveillance, you will have the tests listed below.

• Prostate specific antigen (PSA) tests
You will have these every three to six months. They measure the amount of PSA in your blood. PSA is a protein produced by cells in the prostate.
• Digital rectal examinations (DRE)
You will have these every three to six months for two years, then every year. A DRE is where a doctor or nurse feels your prostate gland through the wall of your back passage (rectum).
• Prostate biopsies
You will normally have these every few years, depending on your treatment centre.² A biopsy involves taking small pieces of prostate tissue to look at more closely under a microscope for signs of prostate cancer. It will be like the biopsy you had when your cancer was first found. You may hear this called a trans-rectal ultrasound (TRUS) guided prostate needle biopsy.

Some men may have a template or saturation biopsy which involves taking more tissue samples than a TRUS biopsy - usually about 32 samples from different areas of the prostate gland. This procedure is normally done under general anaesthetic.

There is a greater chance of finding prostate cancer cells using a template or saturation biopsy because more of the prostate is looked at.³ Talk to your doctor about the advantages and disadvantages and possible side effects of these types of biopsy.

In some centres you may be offered a type of MRI scan called a diffusion scan to look for any abnormal looking areas to target during the biopsy. Clinical trials are looking at how useful these scans are at detecting and monitoring prostate cancer.

You can find out more about all of these tests by reading our Tool Kit fact sheet, How prostate cancer is diagnosed.

If tests show signs that the cancer is changing, your doctor or nurse will discuss with you whether you should have treatment and what the treatment options are. You may also decide at any time that you would feel happier starting treatment. Some men find it difficult to live with prostate cancer and worry that it may change or spread.^{4 5} Some men on active surveillance may choose to have treatment even though there is no change in their cancer because they are worried about it.⁶

You may find that it helps to talk to family or friends about how you are feeling. You could also speak to your doctor or nurse or call our specialist nurses on our confidential helpline.

Watchful waiting and active surveillance are both ways of monitoring prostate cancer and avoiding immediate treatment. However, there are some differences, including:
• who may be suitable for each approach
• what kind of tests you will have and how often you will have them.

Active surveillance usually involves more regular hospital tests, including prostate biopsies. The aim is to treat the cancer promptly if it shows signs of changing and to try to get rid of it completely. Active surveillance is suitable for men with cancer that is contained within the prostate gland (localised prostate cancer), who are fit enough to have treatment such as surgery or radiotherapy.

Watchful waiting usually involves check-ups at the GP surgery rather than at the hospital. Check-ups usually happen less often than with active surveillance. The aim is to treat the cancer if it starts causing problems or symptoms. Treatment aims to control the cancer rather than getting rid of it completely. Read our page on watchful waiting for more information.

Other terms you might hear
Some people use others terms such as active monitoring and 'wait and see' to describe both watchful waiting and active surveillance. The terms can mean different things to different people so it is important that you talk to your doctor or nurse to find out exactly what type of monitoring you are being offered.

Active surveillance is suitable for men with low risk, early stage prostate cancer that is contained within the prostate gland (localised prostate cancer).⁷ It may also be suitable for some men with intermediate risk cancer,⁷ and your doctor or nurse will discuss whether it is an option for you. If you have high risk localised prostate cancer,⁷ you will probably not be advised to have active surveillance.

To work out your risk group, your doctor will look at:
• your PSA level
• your Gleason score, which shows how aggressive your cancer is likely to be, and
• the stage of your cancer, which shows how far your cancer has spread.

Low risk⁷
Your cancer may be described as low risk if:
• your PSA level is 10ng/ml or less, and
• your Gleason score is 6 or less, and
• the stage of your cancer is T1 to T2a.

Intermediate risk⁷
Your cancer may be described as intermediate risk if:
• your PSA level is between 10 and 20 ng/ml, or
• your Gleason score is 7, or
• the stage of your cancer is T2b or T2c.

You can read more about risk on our localised prostate cancer page.

Your doctor or nurse may also consider the amount of cancer cells found in each sample taken during the biopsy. Active surveillance may be suitable for you if you have cancer in less than half of the samples taken, with only a small amount of cancer in each sample.⁷

Other tests
There are some other tests that you may have to help decide whether active surveillance is suitable for you, but these are much less common and you may not be offered them. They are described below.

PSA density
Your doctor or nurse may measure your PSA density. This measures your PSA level in relation to the size of your prostate gland. If you have a lower PSA density, active surveillance may be a suitable option.⁷ Your doctor will work out your PSA density by dividing your PSA level by the volume of your prostate gland. Your doctor or nurse can tell you the volume of your prostate gland and can help to explain more about PSA density.

Free and total PSA test
In some cases you may be offered a free and total PSA test to help show how aggressive the prostate cancer is. This measures the ratio between two different types of PSA found in the blood (free and total). There is evidence to suggest that men with less aggressive cancer will have a higher amount of free PSA.⁸ This test is not available in every treatment centre. You can ask your doctor or nurse whether it is available in your area.

Other treatment options
Your specialist team should discuss the advantages and disadvantages of all your treatment options with you. Other treatment options for cancer that has not spread outside the prostate gland (localised cancer) may include:
• surgery (radical prostatectomy)
• external beam radiotherapy (EBRT)
• brachytherapy (a type of radiotherapy)
• watchful waiting

You may also be offered high intensity focused ultrasound (HIFU) or cryotherapy. They are not widely available in the UK and researchers are studying better ways of carrying out these treatments. They may be available in specialist centers or as part of a clinical trial.

For more information on all of the treatments listed above, please read our page on treatment options or call our Specialist Nurses on our confidential helpline.

Unsure about your diagnosis and treatment options?
If you have any questions about your diagnosis ask your doctor or nurse. They will be happy to explain your test results and talk with you about your treatment options. It is important you feel you have enough time and all the information you need before making a decision about treatment. We have more information on our pages on diagnosis and treatment. You can also speak to our Specialist Nurses on our confidential helpline.

Advantages
• As there is no treatment involved, there are none of the physical side effects.
• It does not interfere with your everyday life as much as treatment.

Disadvantages
• You may need to have more prostate biopsies which can cause short term side effects, and which some men find uncomfortable.
• There is a small chance that the cancer may grow more quickly than expected and become more difficult to treat.⁹
• Some men may become anxious or worry about their cancer changing.

What might be an advantage for one person may not be for someone else. Please talk to your specialist team about your own situation.

PSA level

A rise in the level of PSA in your blood may be a sign that your cancer is growing. Your doctor will look at how much your PSA level has risen and over what time period. This may involve looking at the rate at which your PSA level changes (PSA velocity) and the speed at which it will double (PSA doubling time).^{10 11 12}

Your PSA level can be affected by other factors, such as age, urinary infection or some medicines, but if it rises at a significant rate, then your doctor may discuss further biopsies and starting treatment with you.

Digital rectal examination (DRE)
If the doctor or nurse feels any changes during the digital rectal examination then treatment may be recommended.

Biopsy results
If your biopsy results show a larger amount of cancer or a higher Gleason score than your previous results, you may be offered treatment.

MRI results
If you had an MRI and your repeat MRI scan shows the cancer has grown larger, you may be offered treatment.

Research studies have shown that between 14 to 41 per cent of men go on to have treatment during active surveillance.⁹ Most men will have treatment because their tests show that their cancer has changed. But some men may decide that they want to have treatment, even when there are no signs of any changes, mostly because they are worried that their cancer will spread.^{9 13}

Changes to your cancer
If you have active surveillance, there is a chance that your cancer might grow, but remember that the tests used to monitor your cancer aim to find any changes early enough to treat it successfully.

Studies have found that men who go on to have treatment after a period of active surveillance can still have their cancer treated effectively with surgery or radiotherapy or other treatments.^{9 14 15}

Although the tests used in active surveillance are reliable at finding changes in the cancer, there is always a small chance that changes may not be picked up.
Sometimes, men who have been diagnosed with low risk prostate cancer may actually have a more aggressive cancer which would benefit from treatment.^{16 17 18 19} This is because the prostate biopsy may miss the cancer if it is in an area of the prostate where a sample was not taken. There is also a small chance that the cancer may spread outside the prostate or to other parts of the body before being picked up, and treatment will no longer be able to get rid of it.¹³

You can talk to your doctor or nurse about your own risk of your cancer growing.

Changes to your health
There is also a risk that your general health may change, which would make some treatments unsuitable for you if the cancer did grow. For example, if you were to develop heart problems, you may be advised not to have surgery to remove the prostate, as an operation could be risky for you. You can find out more about staying healthy by reading our page on diet.

It is important that you discuss all the advantages and disadvantages with your doctor or nurse, to help you decide whether active surveillance is right for you.

As active surveillance involves no treatment there are no physical side effects. But you may need to have prostate biopsies every few years.

Having a biopsy may cause some short term side effects such as blood in your urine, faeces or semen. About 1 in 50 men (two per cent) are at risk of developing a serious infection after biopsy. You will have antibiotics before your biopsy to help prevent infection.

If you decide that you would prefer to start treatment, you can do so at any point. You should speak to your doctor or nurse about which treatment option is best for you. Depending on when you last had a biopsy, you may need to have tests to see what stage your cancer is at. For more information on treatments, you can read our treatment choices pages or call our Specialist Nurses on our confidential helpline.

As well as getting medical help to treat your cancer, you may find that it helps to talk to family or friends about how you are feeling. Sharing concerns can make any decisions about your treatment easier to deal with. You could also speak to your doctor or nurse or call our Specialist Nurses on our confidential helpline.

Partners and family also often worry about their loved one, and may find it helpful to talk to the doctor or nurse.

Some people find that it helps to talk to other men who have had active surveillance. There are prostate cancer support groups throughout the country. You can ask your doctor or nurse for details.

We can also arrange for someone who has experience of prostate cancer to speak to you through our one to one support service. You can also sign up to our online community.

You may find it helpful to keep a note of any questions you have to take to your next appointment.

• How often will I have my PSA level checked?
• Who will check my PSA level and give me the results?
• How often will I see my doctor or nurse?
• How often will I have a digital rectal examination?
• Will I need repeat prostate biopsies and how often?
• How quickly would my PSA level have to rise for you to recommend treatment?
• What are the risks and benefits of active surveillance for me?
• What treatments could I have if my cancer grows?

British Association for Counselling and Psychotherapy (BACP)
www.itsgoodtotalk.org.uk
Telephone: 01455 883300
BACP will help you find qualified counsellors. They are happy to discuss any queries or concerns you have about choosing a counsellor or the counselling process.

CancerHelp UK
http://cancerhelp.cancerresearchuk.org
Freephone: 0808 800 4040 (Mon-Fri 9am-5pm)
Part of Cancer Research UK, Cancer Help provides information about all types of cancer and a database of cancer clinical trials.

Healthtalkonline
www.healthtalkonline.org
Watch, or listen to, or read about personal experiences of men with prostate cancer and other medical conditions.

Macmillan Cancer Support
www.macmillan.org.uk
Freephone: 0808 808 0000 (Mon-Fri 9am-8pm)
Provides practical, financial and emotional support for people with cancer, their family and friends.

Reviewed by:

• Sue Forbes, Prostate Cancer Clinical Nurse Specialist, Torbay Hospital, Torquay
• Debbie Gray, Urology Oncology Specialist Nurse, County Durham and Darlington Foundation Trust
• Chris Parker, Consultant Clinical Oncologist and Honorary Senior Lecturer, Royal Marsden Hospital and Institute of Cancer Research
• Anup Patel, Consultant Urological Surgeon, Barts Health, London and Chair of Clinical Studies Committee, EAU Research Foundation
• Prostate Cancer Voices
• Prostate Cancer UK Specialist Nurses

Written and edited by:
Prostate Cancer UK's Information Team

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