21 August 2020
If you have low risk prostate cancer, Active Surveillance is increasingly being recommended as a management option for your disease, in order to avoid unnecessary and invasive treatments when it is clinically safe to do so. Estimates suggest about 60% of low risk prostate cancers in Australia are managed with Active Surveillance.
If you decide on Active Surveillance to manage your prostate cancer, it's important to follow your surveillance protocol, in consultation with your doctor and specialists. This ensures that if your cancer starts to grow, it can be caught and treated before it spreads beyond the prostate. If you miss any tests on Active Surveillance, you increase your risks of unchecked disease progression, which could be harmful.
So, what is Active Surveillance, and is it a good treatment option for you?
How are prostate cancer treatment decisions made?
In deciding how best to treat your prostate cancer, your doctor needs to determine the type of cancer you have and how likely it is to progress to advanced disease.
Cancers that are not likely to grow and spread are considered low-risk prostate cancer, while those that are more likely to progress to advanced disease are considered high-risk prostate cancer. The grade and stage of the cancer helps determine the risk level.
Grade: the aggressiveness of the cancer cells and how quickly they are expected to grow. This is based on the biopsy results and is determined by a pathologist. Low-grade cancers usually grow slowly and are less likely to spread. Higher grade cancers are more likely to grow quicker and spread to other body parts.
Stage: describes the cancer’s size and whether it has spread beyond the prostate. This is based on the digital rectal examination and imaging tests. Imaging tests include CT, MRI, bone scan and PMSA PET scans. The amount the cancer has spread gives an indication of how extensive the cancer is.
Your doctor will consider the level of risk from your cancer and other factors including your age, general health and your personal preferences before recommending the best treatment for you. If you have low risk localised prostate cancer you might be offered Active Surveillance. Occasionally, Active Surveillance is offered to men with intermediate risk (medium risk) prostate cancer.
Active Surveillance is not recommended for men with high risk or aggressive prostate cancer. Instead, active treatment like surgery or radiation therapy will be offered.
To learn more about prostate cancer grading visit PCFA’s website here.
What is Active Surveillance?
Active Surveillance is a treatment option for men with low risk prostate cancer. There is now strong evidence that it is safe for men with low risk prostate cancer to be regularly and carefully monitored. Occasionally, Active Surveillance is recommended for men with intermediate risk prostate cancer. In Australia most men with low risk prostate cancer choose Active Surveillance as their preferred treatment.
The aim of Active Surveillance is to closely monitor or survey the cancer for any signs or symptoms of disease progression that could cause harm. These signs may be an increase in the stage of the cancer determined by MRI or repeat biopsy, an increase in the grade of the cancer or a significant rise in the PSA level. Most cancers never progress and do not need any further treatment. If the cancer is seen to be progressing, treatment like surgery or radiotherapy will be recommended. It is quite acceptable for a man to start Active Surveillance but then change his mind and have active treatment later even if his cancer hasn’t changed.
Active Surveillance can delay the need for treatment for several years in some men and for others they may avoid ever needing to have active treatment for their prostate cancer.
Who can have Active Surveillance?
Active Surveillance may be suitable for you if you have low risk prostate cancer defined by:
- PSA levels less than or equal to 10ng/ml and
- low grade cancer – Grade Group 1 (Gleason score of less than or equal to 3+3=6) and
- early stage cancer that is localised within the prostate – TNM Stage 1 or 2.
Occasionally men with intermediate risk prostate cancer choose Active Surveillance. These men are often highly motivated to delay treatment or may have other health problems.
Why choose Active Surveillance?
Low risk prostate cancers are often slow growing and less likely to spread to other parts of the body.
Active treatments like surgery and radiotherapy can come with significant side-effects that will affect your daily life.
Research shows that many men who choose Active Surveillance never need active treatment. For others on Active Surveillance, treatment can be safely delayed for several years.
What does Active Surveillance involve?
Active Surveillance can be different for different men. Your doctor will advise you on your specific Active Surveillance monitoring protocol. It is very important that you keep track of your appointments and do not miss regular tests that have been scheduled for you.
Active Surveillance involves regular testing. Some of the tests you will have include:
- PSA testing - PSA will be checked at regular intervals. PSA levels fluctuate over time, even if the cancer isn’t growing. Your doctor will decide whether you need further tests by looking at the pattern of your PSA changes. Learn more about PSA testing here.
- Digital Rectal Examination (DRE) - This is where the doctor feels the prostate through the wall of the back passage (rectum) to check the size of the prostate and if there are any abnormalities or changes.
- MRI scan – An MRI scan is done before you start Active Surveillance to make sure the cancer hasn’t spread outside the prostate. It may also be done as part of your Active Surveillance plan, especially if your PSA test or DRE have changed.
- Biopsy - All men need a biopsy at diagnosis to determine the grade of the cancer before being offered Active Surveillance. During Active Surveillance, you will need further biopsies.
If your test results suggest that your cancer could be growing, you may be offered further tests to check on the cancer. If any changes are found, you could be advised to have active treatment that aims to cure the cancer.
Active Surveillance is continuing to be studied and protocols might change as new evidence becomes available. This could affect which tests are required and how often they need to be repeated. As they are developed, new tests may be offered to help predict whether treatment is needed or not.
Some questions to help you make your decision.
When deciding whether to undergo Active Surveillance, here are some things to ask your doctor:
- What do the tests tell us about my cancer?
- How do you know it hasn’t spread?
- What would happen if I don’t start treatment straight away?
- What are my options for treatment?
- What are the pros and cons of each option in my case?
- Are there other factors I need to consider before deciding?
- What are the risks from delaying treatment?
- What lifestyle changes should I be making?
- How often will I need to have repeat investigations such as MRI and/or biopsy
- If I start on Active Surveillance, what is the likelihood I will need to have active treatment in the future
Taking your partner or another support person with you to medical appointments can help you to make treatment decisions.
Who should move from Active Surveillance to treatment?
Active Surveillance has been shown to be a safe option for men with low risk prostate cancer to either avoid or delay the need for treatment. Men who remain on Active Surveillance have the same chance of living for 10 years as they would if they had chosen to have surgery or radiation therapy.
The length of time men remain on Active Surveillance is variable and many men may never need treatment. Some reasons men move from Active Surveillance to treatment include:
- Increase in cancer grade - the biopsy results show that the tumour is becoming more aggressive.
- Increase in cancer size – the tumour has become bigger and may have started to spread. This is determined by a PSA level increase, results from a biopsy and/or MRI scan.
- Anxiety - some men can feel very anxious because they are afraid their cancer will grow.
If you are on Active Surveillance and are thinking about starting treatment, understanding as much as you can about prostate cancer and the different treatment options can help you decide which option is best for you. Ask your doctor and/or Prostate Cancer Specialist Nurse for as much information as you need. It can also be helpful to discuss your options with your partner, family and/or close friends. Speaking to people at your local prostate cancer support group or through PCFA's Online Community can also help you decide.
Compliance is essential for a good result with Active Surveillance.
Research has found that many Australian men with low risk prostate cancer do not fully comply with prescribed Active Surveillance protocols. You can read the research here.
While the reasons for non-compliance require further research, possible barriers include individual factors, social and cultural demographics, lack of support, gaps in the health care system, and the need for improved patient-clinician communications.
It's vital to keep up with routine monitoring of your prostate cancer. If you don't, you increase the risk that changes to your prostate cancer may not be detected, leading to advanced disease and lower prospects for long-term survival.
PCFA is actively looking at ways to address awareness and action in order to improve outcomes for Australian men impacted by prostate cancer, consistent with the seven priority actions identified in our recently released Survivorship Essentials Framework, available here.
Visit PCFA for information and support at www.prostate.org.au/support/ or call on 1800 22 00 99.