Coping with a diagnosis of metastatic breast cancer

People react in different ways to discovering they have metastatic breast cancer. 

It’s very likely you’ll experience many different emotions. Anxiety, fear and anger are normal when you are diagnosed with an incurable or life-limiting illness. You will probably have frequent mood changes.

We’re here with support and information to help you cope.

We share what others with metastatic breast cancer found helpful during their experience.

There are also options if you need professional help to manage the turmoil of emotions.

How you may feel

Finding out that breast cancer has returned and spread to other parts of the body can be devastating.

If this is your first diagnosis of breast cancer (called 'de novo' metastatic breast cancer) you may feel shocked and wonder why it wasn't found earlier.

People experience feelings such as:

• shock
• anger
• anxiety
• confusion
• fear
• disbelief
• sadness.

You may feel overwhelmed at the options for treatment, especially if you have no previous knowledge of breast cancer.

At first, your brain may be so busy you find it hard to sleep. This can make it difficult to think clearly and make good decisions.

It’s very common to worry about what is ahead for you. If you have a partner or family, you may also be concerned about how they are feeling and the impact on them.

The hardest thing can be facing an uncertain future but people tell us that making changes and planning ahead gives them a sense of control. We have practical advice for people Just diagnosed with metastatic breast cancer.

Things you can do to help manage emotions

A diagnosis of metastatic breast cancer is different for everyone. There’s no rule for how to handle emotions, you have to do what’s right for you. We have some strategies that can help.

Assess what really matters

Some people want to continue their normal daily routine as much as possible. This includes working when they feel well enough to do so. Others feel inspired to transform their lives completely.

It’s important to give yourself time after the initial shock of your diagnosis before you make any major changes. Talking to people – such as a counsellor or psychologist – can help you:

• explore your options
• clarify your goals
• think about what information you need to make decisions. 

For example, you may start thinking about who or what is most important to you and what you enjoy doing.

Maybe you’d like to focus on activities that haven't been a priority. You might want to see more of your family and friends, or simply spend time outdoors, watching movies or listening to music.

Many people focus more on their general health – eating well, meditating and doing regular exercise – which can improve their emotional wellbeing and physical wellbeing.

Don’t look for blame

It’s common for people with metastatic breast cancer to ask themselves questions such as:

• could I have done something differently?
• did I make the right treatment choices before?
• why was this not picked up earlier?

Remember, breast cancer and metastatic breast cancer are no one’s fault. You should never blame yourself.

Unfortunately, we still don't know why breast cancer spreads, or who is most likely to develop metastatic breast cancer.

Some breast cancers spread or return despite treatment and lifestyle changes. The cancer may spread simply because it is a fast-growing cancer.

It may help to understand the guidelines on scans after you finish treatment for early breast cancer. Current guidelines don't recommend regular whole body scans to detect metastatic disease in its very early stages after early breast cancer treatment. Research has shown that detecting metastatic cancer before there are any signs of it does not affect treatment outcomes or improve overall survival.

Metastatic breast cancer can be treated whenever it is found, even though it can’t currently be cured.

Know that it can get easier

At first, you may find it difficult to imagine you’ll ever feel calm or happy again.

It’s hard to believe that people live through this experience and go on to gain control and peace in their lives. But they do – and it’s worth reminding yourself of that, whenever you’re feeling particularly overwhelmed.

Some people cope by not thinking too much about the future. They concentrate on living for today.

You may find simple changes to your daily routine or attitude to your illness can help you make the most of the things that make you happy.

Find ways to manage uncertainty

Generally, we like to know what to expect in life, so uncertainty can make us feel uncomfortable or anxious.

Metastatic breast cancer adds a new level of uncertainty, but most people find ways to manage this.

For some, knowing all about their disease and how it's likely to be treated reduces some of the anxiety. Other learn to focus on the things they can control, then deal with things they can't control as they happen.

Relaxation, meditation, mindfulness or prayer may help with this.

Don’t hesitate to ask your doctor or a member of your treating team for more information if you need it. Call BCNA’s Helpline on 1800 500 258 for information, support, resources and for a referral on to the services you need. 

Other ways to cope

Our members have shared with us other ideas that have helped them.

• Write a list of ways you can participate in your own health care – small things like being well prepared and asking questions can help reduce your stress.
• Don't be afraid to ask for help or to accept help when people offer.
• Put yourself first. If it helps, screen your phone calls. Choose who you want to see and when. Some people start a blog or group email to keep family and friends up-to-date so they don't have to tell everyone individually. 
• Ask to see a breast care nurse. Breast care nurses are registered nurses, trained to support people with breast cancer. They can help you find your way through the health system and can be a regular point of contact.
• Connect with others in the private Online Network group, Living with metastatic breast cancer.
• Take time out. Do things you enjoy and say no to activities you don’t feel up to doing. Give yourself a 'cancer-free' day.
• Spend time with people who make you feel good.
• Talk about your emotions, which can help you process how you’re feeling. We have a list of where to find support 
• A good night’s sleep helps you to cope better both physically and emotionally. For help, read sleep problems and ways to improve them.
• Exercise when you can. Regular exercise has enormous benefits to health and wellbeing. It can also help to make you feel less anxious, stressed or depressed.
• Try relaxation or meditation to help keep your emotions in balance.

People share their experiences

People who have experienced breast cancer share their insights into what helped them feel supported.

Seeking information after a metastatic breast cancer diagnosis.