Managing anxiety on active surveillance

Finding out you have prostate cancer can be overwhelming. If your healthcare team has recommended active surveillance, you might be feeling relieved that you don’t need immediate treatment.

But for many men living with cancer, even when it’s being carefully monitored, this can bring anxiety, uncertainty and emotional distress.

In this article, we’ll:

• explore how active surveillance can affect your mental health
• give you some practical tips to help you manage any anxious feelings you may be having
• share lots of useful resources
• direct you to organisations where you can find more information and support.

Active surveillance and your mental health

Life on active surveillance can be challenging – and it can affect how you think and feel about yourself and your future. It’s important to remember these reactions are completely normal, and you’re not alone.

Here are some common emotions men on active surveillance describe:

• Anxiety – having ongoing feelings of worry about whether your cancer might change or spread.
  
  
• Uncertainty – feeling like you’re living ‘in limbo’, unsure of what the future holds.
  
  
• Loss of control – feeling powerless or disconnected from your body.
  
  
• Isolation – feeling like others don’t fully understand what you’re going through.
  
  
• Low mood – struggling with the emotional ups and downs of waiting for results.

These feelings are normal and completely understandable. But knowing what to expect and finding ways to cope can help you recognise your feelings and regain a sense of control. Most men find they begin to feel less anxious over time.

Tips for managing anxiety

Managing anxiety during active surveillance involves both practical tools and emotional support. Here are some helpful tips and strategies:

Get the information you need

Understanding active surveillance - what it means, why you're on it and what to expect - can give you some reassurance. Being informed often helps to reduce the unknowns that can cause and fuel feelings of anxiety.

You can find out more about active surveillance by reading our information webpage or watching our introduction to active surveillance webinar.  

Our Specialist Nurses are also here to support you and help answer any questions you may have. If you’re not sure where to start, use our list of questions to help get the information you need.

If you’re trying to decide if active surveillance is right for you, you might find it helpful to use a decision-making tool. You’ll need to enter a few details about your diagnosis, so it's best to complete this with your doctor or nurse.

Keep a diary or journal

Writing about your thoughts and feelings can help you process your emotions and track patterns in your anxiety. Over time it can help you recognise triggers or situations that make you feel worse or better.

You might also find it useful to record your medical appointments, test results and any questions you have for your doctor. We’ve created a Life on Active Surveillance Diary to help you track your appointments, record test results and note down any important health and wellbeing information. 

You can download the diary or order our active surveillance fact sheet for a physical copy.

Reframe your thinking

It might help to shift the way you view active surveillance. This can be hard, especially when your gut feeling might be to treat the cancer and get rid of it. But active surveillance isn’t ‘doing nothing’ - it’s an active, careful approach that’s designed to monitor your prostate cancer while also protecting your quality of life.

You may want to try Cognitive Behavioural Therapy (CBT). This is a type of talking therapy that focuses on how your beliefs, thoughts and attitudes affect your feelings and behaviour. During CBT, you’ll identify and explore how these interact to cause anxiety, and work on changing them. 

Take care of you

It’s important to look after yourself, both physically and mentally, so try to find activities that help you relax and take your mind off things. This could be as simple as getting outdoors for some fresh air and exercise or spending time doing hobbies you enjoy. You could even try out other ways to relax, like breathing techniques, mindfulness or medication.  

You can read more about looking after your overall wellbeing, including more tips on dealing with stress and anxiety, on our Wellbeing Hub.

Getting the right support for you

If your anxiety becomes overwhelming or begins to affect your day-to-day life, don’t wait to reach out. Here are a few places you can go if you feel like you need support.

Professional support

Talking to your GP, a counsellor or a psychologist can make a big difference. There are also organisations and helplines that can offer support and guidance.

Peer support

Some men find that speaking to others who’ve been on, or are on, active surveillance is a great way to feel supported and get advice. Sharing your personal experience with someone else can offer comfort, reduce uncertainty and give you a safe space to speak openly with people who understand what you’re going through.

Why not try our One-to-One Peer Support Service, or find a local support group?

Helpful resources and organisations

There are lots of other organisations that offer practical support with managing feelings of anxiety and looking after your wellbeing more generally. These ones are a great place to start:

• The British Association for Counselling and Psychotherapy provides information about counselling and details of therapists in your area.
  
  
• NHS Every Mind Matters provides information and support for looking after your mental wellbeing, including an anxiety email support programme and a personalised Mind Plan.
  
  
• Anxiety UK offers resources and information to help if you’re struggling with anxiety.
  
  
• Penny Brohn runs courses and offers physical, emotional and spiritual support for people with cancer and their loved ones.
  
  
• Mind provides information and support around mental health issues, such as anxiety and depression.  

We're here for you

Do you need immediate support with any of the issues raised in this article? Whatever you'd like to talk about, our Specialist Nurses are here to help. You can call 0800 074 8383, send an email or write us a message on WhatsApp. 

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Josy Anderson Millington is a Senior Health Information Officer at Prostate Cancer UK, who is currently completing a Professional Doctorate in Health Psychology.