Finding out you have secondary breast cancer

Photo: Maria Waters and family
You might feel a range of emotions when diagnosed with secondary breast cancer, but you can go on to have peace and control

How you might feel

It can be devastating to find out you have secondary breast cancer, particularly if you have been through the trauma breast cancer in the past and thought you had overcome it. You may feel angry, shocked and scared, and it may take a while for the news to sink in. You'll probably worry about what lies ahead for you and your family. It can be comforting to know that many women have lived with secondary breast cancer for many years and have found peace in their lives.

'The primary emotion is fear, but try not to let the fear cripple you. Live one day at a time and live to the fullest - you are alive today and there is life after secondary breast cancer.' -- Voula

'You will have black moments but those moments will pass -- it might be one day, three days or a month, but it's important to remember it will pass.' -- Franca

Maintaining hope

Many women with secondary breast cancer say that, for them, hope is vital.

When you're initially diagnosed with secondary breast cancer, your feelings of hope might take a dive, but over time most women realise that hope hasn't gone, although its nature may have changed. For example, your hope may now centre on long periods of disease control and feeling well, or you may look forward to a special trip or event.

'A diagnosis of secondary breast cancer is not the end of the road; it is the start of a new journey. Some days you will be filled with fear and uncertainty, this is to be expected. Honour your feelings, they are valid; and always remember tomorrow is another day. Do not let anyone take away your hope.' -- Judy

There's no-one to blame

Try not to blame yourself or spend too much time thinking about what you could have done differently. Unfortunately, some breast cancers will spread whatever treatment a woman has received and whatever lifestyle choices she has made. It helps some women to understand that, unlike early breast cancer, finding secondary breast cancer early doesn't usually make it any easier to control.

'Being diagnosed with breast cancer was a huge blow. I found it harder the second time around and I was very angry! I thought I had done 'all the right things' with treatment and life style changes.' -- Judy

When your first diagnosis is secondary breast cancer

'My first diagnosis was of secondary breast cancer and I was completely ignorant about the whole thing. I thought from all the ads on TV that it was fine and it was curable. I needed to be told by somebody that it was more serious than an early breast cancer diagnosis.' -- Penny

For a small number of women, their diagnosis with secondary breast cancer is their first diagnosis of breast cancer. It's understandable that most women in this situation feel panic and uncertainty. It can seem like a bad dream. After the initital shock, you will gradually start to think a little more clearly and realise there are things you can do to cope with the situation.

  • Be informed. Sometimes the information may not be what you want to hear, but at least when you know your situation you can start thinking about how you will adapt.
  • Talk to your partner and loved ones about how you are feeling. Sharing thoughts and feelings generally leads to increased closeness and takes away the burden of trying to keep a lid on things.
  • Learn to do some 'self-talk'. Gloomy thoughts will often pop up and can gain momentum. Being able to challenge unhelpful thought patterns takes practice but is very worthwhile. Your GP may be able to teach you some techniques or refer you to a psychologist or other counsellor.
  • Put yourself first. Allow family members to screen your phone calls. Allow yourself to be the centre of your world. Choose who you want to see, and when.
  • If you don't have anyone close you can talk to, it may be helpful to talk to a member of your medical team or to other women in a similar situation through our Online Network.

What next?

It may take a while to work out how you now want to live your life. Take one step at a time - there is no need to rush into big decisions. Some women prefer to carry on with their usual daily routine, while others will want to completely alter their life. It can help to talk to those around you or to a health professional before making big changes.

'I started making drastic decisions -- I was going to quit my job. Talking to a psychologist was really valuable ... she helped me to think about things in different ways.'

Think about what information you need to help you make decisions. The Hope & Hurdles pack can help you.

'Spend time talking to people, most importantly your doctors, other health professionals and people who have experienced this themselves.' -- Jill

More information

Digital storytelling project

Life, what a ride!

In the video story below, Judy Shepherdson tells of her long battle with breast cancer, first early breast cancer, then advanced disease. She looks at how it has influenced her life and tells of her commitment to living her life to the full.

Downloads

 

Hope & Hurdles

Hope & Hurdles is a free, comprehensive information resource especially  for women diagnosed with secondary breast cancer. It is also useful for family members.

You can order it online, or by phoning 1800 500 258.

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