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Active surveillance

The information on this page comes from our Tool Kit fact sheet on active surveillance. To order your own tailored copy of the Tool Kit, visit our publications page. You can also download and print a PDF version of this fact sheet.

This page is for men who would like to know more about how localised prostate cancer can be monitored to find those cancers that will benefit most from treatment. It describes how some men with low risk prostate cancer can be monitored, avoiding or delaying the side effects of treatment. If you have any questions about active surveillance, you can speak to your specialist team or call our confidential Helpline.

What is active surveillance?

Many prostate cancers are diagnosed at an early stage by Prostate Specific Antigen (PSA) testing. Prostate cancer is often very slow growing and for many men with prostate cancer, the disease may never progress or cause any symptoms. In other words, many men with prostate cancer will never need any treatment. 1

Treatments for prostate cancer can cause side effects, which can affect your lifestyle. By monitoring the cancer with active surveillance, you can avoid or delay the side effects of treatment. The most common side effects of treatments for localised prostate cancer include problems getting and keeping an erection and urinary incontinence.

Not all prostate cancers need treatment. Active surveillance aims to find those cancers that are likely to grow and cause symptoms if they are not treated. These cancers can then be treated at an early stage.

Active surveillance is only suitable for men with low to medium risk prostate cancer. High risk cancers usually need to be treated straight away. If there is a risk that your cancer may cause symptoms if it is left alone, then you will be offered treatment.

Active surveillance involves monitoring your prostate cancer to begin with, rather than treating it straight away. Typically, monitoring involves: 2,3,4,5,6

If you choose active surveillance, you will need to have a biopsy which takes at least ten samples (cores) of prostate tissue. If, when you were diagnosed, your biopsy did not take this many samples, you may need to have another biopsy straight away.

The monitoring programme, including the interval between biopsies, may vary between hospitals. Continued observation of the cancer is important to identify any change. Any sign that your cancer is growing should be picked up at an early stage and your specialist will discuss with you whether you should have treatment for it and what treatment options are available.

You may decide to have treatment if your biopsy results show that your Gleason score has increased or if your PSA level is rising at a fast rate. Or you may decide at any time that you would feel happier starting treatment.

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Who can have active surveillance?

You may be suitable for active surveillance if you have localised prostate cancer that may never need treatment. Usually your PSA level should be less than ten and your Gleason score should be six or less. 3

However, depending on your individual situation and your personal preferences, your specialist team may offer you active surveillance if your cancer has slightly higher risk features. Your PSA level may be up to 15 and your Gleason score may be up to 7. 3

Your specialist team may measure your ‘PSA density’. This measures your PSA level in relation to the size of your prostate gland. Men with larger prostate glands have higher PSA levels. You will usually need to have a PSA density of less than 0.15 ng/ml/ml to have active surveillance. You can work out your PSA density by dividing your PSA level by the volume of your prostate gland. For example, if:

  • the volume of your prostate gland is 50cc and
  • your PSA level is 7 ng/ml, then
  • your PSA density will be 7 divided by 50, which is 0.14.

In this example, the PSA density is less than 0.15, which means that active surveillance may be a suitable option. Your specialist team can tell you the volume of your prostate gland and can help to explain what PSA density means.

Other treatment options for cancer that has not spread outside the prostate gland (localised cancer) may include:

You may also be offered HIFU (High Intensity Focused Ultrasound) or cryotherapy as part of a clinical trial or through private healthcare. These treatments are not used very often in the NHS as a first treatment because we do not know enough about their long term benefits and risks.

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Is active surveillance the same as watchful waiting?

No, it is very different. Watchful waiting aims to avoid treatment unless symptoms develop. If men on watchful waiting get symptoms, such as problems passing urine or bone pain, they can be controlled with hormone therapy. Watchful waiting involves less monitoring than active surveillance and is usually carried out by your GP rather than your specialist team at the hospital. Watchful waiting can be suitable for older men, or those with other health problems that make them unsuitable for other treatments. 7

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What is active monitoring?

Some people use the term ‘active monitoring’ to describe both watchful waiting and active surveillance. It can mean different things to different people so it is important that you talk to your specialist team to find out exactly what type of monitoring you are being offered.

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What are the advantages and disadvantages of active surveillance?

These will vary from person to person. Please talk to your doctor or specialist nurse about your individual case.

Advantages

  • As there is no physical treatment involved, there are no physical side effects.
  • It does not interfere with your everyday life as much as treatment.

Disadvantages

  • Some men may become anxious or worry about their cancer changing.
  • You will need to have more prostate biopsies.

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Why do I need a repeat prostate biopsy?

You will need to have biopsies every two to three years to check that your cancer has not progressed. The biopsy results will tell you the Gleason score of your cancer. Your specialist team will use this Gleason score together with your PSA test result to estimate the risk of your prostate cancer growing.

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What happens if my PSA rises or my biopsy results change?

PSA

The rate at which your PSA level changes can give you and your specialist team an idea of the rate at which the cancer is likely to grow. Your specialist team will look at how much the PSA has risen and over what time period. Your PSA level can be affected by other factors, such as infection or some medicines, so your specialist will be looking for a series of PSA rises rather than a one-off change. If your PSA rises at a significant rate then you will be offered treatment.

Biopsy results

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

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Are there any side effects?

As active surveillance involves no treatment there are no physical side effects. However some men worry about their cancer changing or spreading and this can lead to anxiety or depression. If this happens you should discuss this with your specialist team. You can also call our confidential Helpline on 0800 074 8383. So far, studies have shown no difference between anxiety levels of men who choose active surveillance and those who decide to have treatment straight away.6,8

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What if I change my mind?

You can still have treatment at any time you choose. Your specialist team will discuss your treatment options with you.

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Questions to ask your specialist team

  • Do I need to have treatment straight away?
  • How often will I have my PSA checked?
  • Who will check my PSA and give me the results?
  • How often will I see my specialist team?
  • How often will I have a digital rectal examination?
  • Will I need repeat prostate biopsies and how often?
  • How might the repeat biopsy results show that I need treatment?
  • How quickly would my PSA level have to rise for you to recommend treatment?

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Links

The following organisations provide further information relevant to this page.

Cancerbackup
www.cancerbackup.org.uk
For information on coping with cancer and treatment.

Macmillan Cancer Support
www.macmillan.org.uk
Practical, emotional and financial support for people with cancer, family and friends.

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Reviewed by:

  • Richard Gledhill, Prostate Cancer Charity Specialist Nurse, Queen Elizabeth Hospital, Birmingham
  • Dr Chris Parker, Senior Lecturer and Honorary Consultant in Clinical Oncology, Institute of Cancer Research and Royal Marsden Hospital
  • Lucy Powell, Uro-Oncology Clinical Nurse Specialist, Colchester Hospital University NHS Foundation Trust
  • The Prostate Cancer Charity Information Volunteers
  • The Prostate Cancer Charity Support & Information Specialist Nurses

Written by:

Karen Thomas, Urology Nurse Specialist

Edited by:

The Prostate Cancer Charity Information Team

References used in the production of this page.

1 Hardie C, Parker C, Norman A et al. Early outcomes of Active Surveillance for localised prostate cancer. BJU Int. 2005; 95(7): 956-60.
2 Soloway M, Soloway C, Williams S et al. Active Surveillance; a Reasonable Management Alternative for Patients with Prostate Cancer: The Miami Experience. BJU Int. 2008; 101(2): 165-169.
3 National Institute for Health and Clinical Excellence. 2008. Prostate cancer: diagnosis and treatment. Available at http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11924
4 Klotz L. Low risk prostate cancer can and should often be managed with Active Surveillance and selective delayed intervention. Nat Clin Pract Urol. 2008; 5(1): 2-3.
5 Klotz L. Active surveillance with selective delayed intervention is the way to manage ‘good-risk’ prostate cancer. Nat Clin Pract Urol. 2005; 2(3): 136-42.
6 Barnet K, Parker C, Dearnley D et al. Does Active Surveillance for men with localised prostate cancer carry psychological morbidity? BJU Int. 2007; 100(3): 540-3.
7 Cancer Specialist Library. Prostate cancer - National Knowledge Week 2007 - Active surveillance and watchful waiting (localised disease). Available at: http://www.library.nhs.uk/cancer/viewResource.aspx?resID=250484&code=5df5948d5bdf59cca641d3b47cea9ccb
8 Pickles T, Ruetler J, Weir L et al. Psychosocial barriers to active surveillance for the management of early prostate cancer and a strategy for increased acceptance. BJU Int. 2007; 100(3): 544-51.

Page last updated: May 22nd 2008