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9: Active Surveillance

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Glossary of Terms

Glossary of Terms

ACTIVE SURVEILLANCE 9

What is Active Surveillance?

Many men with low-risk prostate cancer that has not spread are unlikely to come to any harm or decrease their life expectancy from their cancer. Such men may never need any treatment for their cancer as it is so slow growing or ‘lazy’. Men with low-risk cancer have the same survival benefit as those men treated with surgery or radiotherapy. Early treatment can lead to unnecessary side effects affecting quality of life. Instead, doctors may recommend monitoring or observation for men with these types of cancers and defer any treatment should the cancer gets worse. Active surveillance is therefore a strategy of regular, close monitoring of the cancer. The intent is still ‘cure’.

Who can be on active surveillance?

Some of the characteristics that help decide if active surveillance is a reasonable alternative to active treatment options (surgery, radiotherapy or brachytherapy) include: • The cancer is small • The cancer is confined to the prostate • PSA blood test is usually less than 15 • The Gleason score is 6 or 7, suggesting that it is slow growing • If the cancer starts to grow, then you can still have an operation or radiation with the aim of cure • There are no symptoms • You can do your everyday activities without concern about the cancer spreading • You understand the benefits and risks of your decision to be monitored

What other factors are considered for active surveillance?

• Age Younger men tend to live longer with their cancers, and therefore there is a higher chance that the cancer may progress. Although young men can be managed with active surveillance, they require long term follow-up

• General health You need to be fit enough to have other curative treatments such as radiotherapy or surgery, should it be required in future • Family history There may be a higher risk of prostate cancer getting worse in men with a strong family history. However, such men can still safely be offered active surveillance • Personal preference • Ethnicity

Are there any risks of active surveillance?

• The main risk of active surveillance is that the cancer can grow significantly or perhaps spread. This may limit treatment options in future. This is rare if you are monitored closely by a specialist • Some men feel anxious about having a cancer diagnosis but not being treated.

Other men feel anxious about the uncertainty of their cancer status • Frequent medical appointments

What happens with active surveillance?

On an active surveillance pathway, you can expect regular appointments to monitor the cancer. There is no internationally agreed time frame. At each visit, tests may include: • An examination of the prostate to assess any possible change or growth of the cancer • PSA blood test • MRI scan of the prostate - if there is concern about any clinical change or rising PSA, then the cancer may be reassessed with an MRI scan • Repeat prostate biopsy - this will usually only be done if the MRI scan suggests a change in the cancer characteristics. The biopsy will justify if it is safe to stay on active surveillance or move to active treatment options

Common Questions

1. Can I live without my prostate? Yes, a man can live without his prostate. The whole prostate may be removed for cancer or part of it when it is enlarged and causing symptoms. 2. What conditions other than cancer can affect the prostate? • Benign (non-cancerous) enlargement called BPH • Prostatitis - infection or inflammation of the prostate. 3. Do biological women have a prostate? No. 4. How big can the prostate get? There is no real upper limit. • A small sized prostate has a volume i of 30-40ml • A medium sized prostate has a volume of 40-80ml Low-risk prostate cancer is usually slow growing. The chances of the cancer spreading or dying from the cancer 10 years after diagnosis is very low. • A large sized prostate has a volume greater than 80ml.

Example of an active surveillance protocol

Year 1: PSA every 3-4 months At 12 months: Examination of prostate 12-18 months: Consider an MRI scan Year 2: PSA every 6 months and an examination of the prostate every 12 months This should continue every year until active surveillance ends

(NICE: 2019)

When does active surveillance stop?

• At any time when a man starts to feel uncomfortable about living with cancer • Patient preference to move to active treatments such as surgery or radiotherapy • Change in other health conditions limiting lifestyle, quality of life or life expectancy • Moving to watchful waiting • A repeat biopsy shows that the cancer grade has changed • An MRI scan shows that the cancer volume has increased

Common Questions

What is the difference between active surveillance and watchful waiting?

Both approaches have emerged over the past few decades after extensive medical research, showing that men with early, localised prostate cancer can delay treatment, especially older men. The key focus with active surveillance is deferring treatment until it is necessary but with the intent still on cure. Watchful waiting tends to be observation for older men, who have limited life expectancy. The focus is on quality of life

Is active surveillance the same as no treatment?

No, it is an observation strategy to treat the cancer if it is required in future

Is there an internationally agreed protocol for active surveillance?

No. There are guidelines that have been developed by many groups with areas of agreement such as, active surveillance should be the preferred strategy for men with low-risk prostate cancer. However, there is no agreement on eligibility or follow up strategy

Is there anyone who cannot be on active surveillance?

Common Questions Men who have locally advanced prostate cancer or CPG 4/5 (see staging chapter) 1. Can I live without my prostate? Yes, a man can live without his prostate. The whole prostate may be removed for cancer or part of it when it is enlarged and causing symptoms. 2. What conditions other than cancer can affect the prostate? Initially I thought all cancers require chemotherapy. • Benign (non-cancerous) enlargement called BPH It took a while for me to get my head around not • Prostatitis - infection or inflammation having any actual treatment. The potential side effects of the prostate. 3. Do biological women have a prostate?of the various treatments weighed heavily in my No. decision process. Today life continues - 3 years after 4. How big can the prostate get? There is no real upper limit. the dreaded diagnosis. Now I laugh; I relax; but I watch my cancer closely. • A small sized prostate has a volume of 30-40ml • A medium sized prostate has a volume of 40-80ml • A large sized prostate has a volume greater than 80ml.

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