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Metastatic from the start

My biggest frustration was getting people to understand. People make an assumption that I had breast cancer a first time but I had no understanding about any of it, including the treatment or how I would cope. - Vanessa

Sometimes people are found to have metastatic breast cancer when they are first diagnosed with breast cancer. This means that the previously undiagnosed breast cancer cells have spread to the other parts of the body such as the bones, lungs or liver. This is referred to as ‘de novo’ metastatic breast cancer, meaning the breast cancer is metastatic from the start. This is not common – about one in 20 women diagnosed with breast cancer will have metastatic breast cancer from the start. 

If your first diagnosis of breast cancer is metastatic breast cancer, this has undoubtedly come as a huge shock to you. Many people describe this time as overwhelming, feeling they are being constantly bombarded with new information each time they go to hospital or see their doctors. 

The information on this page is designed to help you make sense of all the information being given to you. It is also designed to provide you with a basic understanding of breast cancer and what it means when it has spread to another part of the body.  

This page also contains some helpful tips to help you navigate the health system and learn about other ways that people have coped to help you understand that you are not alone. 

When your first diagnosis is metastatic breast cancer

My first diagnosis was of metastatic 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 people, their diagnosis with metastatic breast cancer is their first diagnosis of breast cancer. Most people in this situation feel panic and uncertainty. After the initial shock, you will gradually start to think a little more clearly and realise there are things you can do to cope with the situation. Below is a list of things that you might find helpful: 

  • Be informed. While the information may not be what you want to hear, staying informed helps you to understand your options. 
  • Think about what you want. Take it one step at a time. Talk to your medical team and ask lots of questions so that you fully understand your situation and the treatment plan. 
  • 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. 
  • Public or private health care- consider you options and the costs involved. Ask your doctor about what no-cost public health options may be available to you even if you have private health insurance. 
  • Ask to see a breast care nurse (BCN). They can help you find your way through the health system and can be a regular point of contact for information and support. BCNA’s Helpline can connect you to a breast care nurse if you don’t have one. Call 1800 500 258. 
  • Anxious thoughts will often pop up and can gain momentum. If you have trouble managing anxious thoughts, you might like to seek professional help. There may be social workers or psychologists at your treatment centre, or your GP may be able to help you or refer you to a psychologist or other counsellor  
  • Put yourself first. Allow family members to screen your phone calls. Choose who you want to see, and when. 
  • Allow others to help and support you. 
  • If you don’t have anyone close you can talk to, it may be helpful to talk to other people in a similar situation through our Online Network. 

How having metastatic from the start might influence treatment

There are some advantages for people diagnosed with de novo metastatic breast cancer compared to people who have progressed following an early breast cancer. The main advantage is that their cancer is ‘treatment naïve’, meaning it has not previously been exposed to any anti-cancer treatments and is therefore likely to be more responsive to treatment. There have been some reports of small numbers of people in this situation with no evidence of metastatic breast cancer following treatment.In addition, there are more treatment options available than for those who have received previous treatment for early breast cancer who may have already ’used up’ some of their options. 

The one positive was that my oncologist said that he more or less had an open book of treatments that he could offer me. 

Another positive that people sometimes describe is that they can feel the cancer in their breast getting smaller once treatments starts. Mammograms and breast ultrasounds may be used as a way of checking that the cancer in the breast is responding to treatment. Many people find this reassuring, knowing that the treatment they are having is working for them. 

Read more about treatment

Further information