Active surveillance for Cambridge prognostic group 1 and 2 (CPG1 and CPG2) early prostate cancer

What does active surveillance mean?

Active surveillance is a way of monitoring prostate cancer that is contained within the prostate and with a low chance of metastasis (spread) and causing death. If you have CPG1 or CPG2 disease active surveillance is a recommended option for managing prostate cancer by NICE. To read about the NICE recommendations more you can access this East of England Cancer Alliance website (opens in a new tab) or use the QR code below:

The aim of active surveillance is to avoid treatment unless the cancer develops to a stage where it may cause you harm. This is so that you can avoid unnecessary side effects of treatment. In formal comparison studies it has been found to be as good as immediate radical treatment (such as surgery or radiotherapy) in terms of survival (risk of dying of prostate cancer).

Who is eligible for active surveillance?

Men diagnosed with Cambridge prognostic group 1, where a prostate specific antigen (PSA) is less than 10ng/ml, biopsy shows Grade Group 1 (Gleason 3+3= 6) and clinical stage T1-T2

or

Cambridge prognostic group 2 where PSA is 10-20ng/ml, Grade Group 2 (Gleason 3+4=7) and T1-T2.

There are a few other factors such as age, how big your prostate is, the extent of tumour on the MRI (magnetic resonance imaging scan) and biopsies (how many samples were positive with cancer) or other ongoing illness that may also be important when considering active surveillance as a choice. Your healthcare provider will discuss your personal risks with you and suitability for active surveillance.

What does active surveillance involve?

An active surveillance programme will vary from patient to patient, depending on your specific circumstances, prognostic group and other factors.

Your nurse or doctor will discuss this with you, but typically your programme will have the following schedule:

• After you have been enrolled to active surveillance all patients will be seen in a dedicated active surveillance/ prostate cancer clinic for further discussion. Here a plan on how your surveillance will be done will be discussed. An early repeat biopsy may also be discussed.
• You may also be invited to attend an active surveillance teaching session or seminar to get more information.
• Once on active surveillance this involve will repeat PSA and may also include interval MRI scan of the prostate. The timing and frequency of these will be discussed with you by the team and tailored to your particular characteristics.
• PSA tests are usually recommended 3- to 4-monthly, and a personalised plan of follow-up arranged. Typically, this will involve PSA blood tests which can be done at your GP surgery; we will ask you to keep a record of these results. This may also be supplemented by online or other tools to keep a track of your PSA. We will give you a PSA level threshold personalised to you and what it should be under and what to do if it goes higher than that.
• Repeat MRI scans may be done be done at yearly or longer intervals depending on what your initial scans showed. Interval scans may be requested if there are other indications, such as if your PSA levels breach the given threshold. If you cannot have MRI, repeat prostate examinations may be recommended.
• A follow-up review will be arranged at 6, 12 or 18 months depending on your particular circumstances. If the PSA and scans suggest any changes then we will arrange to review you.
• Restaging biopsies (non-mandatory) may be discussed at three or five years unless indicated earlier.
• At all times you will have ready contact with your prostate cancer nurse specialist, who you can talk to if you have any concerns or worries.

Triggers for re-investigation or treatment may include:

• evidence of a sequential rise in the PSA (above the pre-set PSA threshold)
• a change in MRI scans or examination findings (if you cannot have MRI)
• a change in your CPG group from a biopsy, PSA or scan
• increase in tumour type or volume on repeat biopsies

You can of course also choose to end surveillance and go onto active treatment at any time you wish to.

Are there any risks with active surveillance?

Changes to your cancer

The tests used to monitor your cancer are aimed at detecting changes early enough to start reinvestigation to see if you need to start treatment rather than continue with surveillance. There is always a small chance that changes may be missed. Talk to your nurse or doctor about your own specific risks as an individual.

Changes to your health

There is a chance that your general health could change, which would make the value of racial treatment like surgery or radiotherapy less likely to give you a survival gain or benefit. For instance, if you develop another illness or have other reason for a shorter life expectancy in this case you may be switched to watchful waiting.

Concerns about active surveillance (psychological impact)

Active surveillance isn’t for everyone. You might find it difficult not to have any treatment for prostate cancer, and worry that it will change or spread. If you are worried, talk to your doctor or nurse. You do not have to stay on active surveillance if you do not want to. To help you understand your risks and outcomes better the website above or the Predict Prostate tool (Predict Prostate (opens in a new tab)) may be helpful.

Side effects from repeat investigations

On an active surveillance program you may be required to have repeat prostate biopsies as part of the monitoring. Prostate biopsies do, however, have a small risk of infection and bleeding and this risk will apply for each biopsy episode though all steps will be taken to minimise this risk. Repeat MRI scans don’t convey added medical risks but can take time, be noisy and be troublesome for those with claustrophobia.

What are the advantages of active surveillance?

• As you won’t have any interventional treatments while on active surveillance, you will avoid any side effects.
• Active surveillance doesn’t interfere with your everyday life as much as treatments do.
• If tests show that your cancer is growing to a stage where surveillance is no longer suitable, you can still have treatment with a high rate of curative success.
• Studies have shown that for men with suitable cancers, active surveillance is an equally good option as treatments and hence its recommendation by the NICE national guidance (see above).

What are the disadvantages of active surveillance?

• You might need to have more prostate biopsies which can cause side effects, and which some men find uncomfortable and painful.
• Your general health could change, which might make some treatments unsuitable for you if you need them.
• Your cancer might grow more quickly than expected, but the chance that this will happen is small.
• Not having treatment can cause high levels of worry in patients about the possibility of their cancer growing.

What to expect after having active surveillance?

• You might need more prostate biopsies which can cause side effects, and which some men find uncomfortable and painful.
• Your general health could change, which might make some treatments unsuitable (surgery) though other equally good treatments are available.
• Your cancer might grow more quickly than expected, but the chance that this will happen is small.
• Not having treatment can cause high levels of worry in patients about the possibility of their cancer growing.

Who will organise the PSA test for me?

You will need to organise the blood test for PSA at your GP surgery. Please ask them to provide you with the results so that you can keep a record. You can use TrackMyPSA (opens in a new tab) or your own method.

What are the alternatives to active surveillance?

Other recommended treatment options can include:

• brachytherapy (a form of internal radiotherapy which involves implanting ‘seeds’ of radioactive material directly into your prostate gland under a general or spinal anaesthetic)
• external beam radiotherapy (beams of radiation to destroy the cancer cells)
• radical prostatectomy (removal of the entire prostate gland)

Where can I get more information on active surveillance?

• Active surveillance and watchful waiting for prostate cancer (opens in a new tab)
• Active surveillance best practice (opens in a new tab)

Who can I contact for more help or information?

Oncology nurses

• Prostate cancer nurse practitioner: 01223 216897 or bleep 154-620
• Uro-oncology nurse specialist: 01223 586748
• Bladder cancer nurse practitioner (haematuria, chemotherapy and BCG): 01223 274608

Non-oncology nurses

• Urology nurse practitioner (incontinence, urodynamics, catheter patients): 01223 274608
• Urology nurse practitioner (stoma care): 01223 349800
• Urology nurse practitioner (stone disease): 07860 781828

Patient Advice and Liaison Service (PALS)

Box 53, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge
CB2 2QQ
01223 216756
Email PALS

PatientLine: *801 (from patient bedside telephones only)

Chaplaincy and multi faith community

Box 105, Cambridge University Hospitals NHS Foundation Trust, Hills Road, Cambridge
CB2 2QQ
01223 217769
Email the chaplaincy

MINICOM System (‘type’ system for the hard of hearing): +44 (0)1223 217589

Access Office (travel, parking and security information)

01223 596060