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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 this page is designed to help you make sense of all of 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 tips to help you navigate the health system and learn about other ways that women 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 women, their diagnosis with metastatic breast cancer is their first diagnosis of breast cancer. Most women 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.
  • 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’. 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.
  • Talk to your treating specialist about the type of supportive care that might be available to you. You may find it helpful to connect with a breast care nurse or other member of a supportive care team, such as a social worker or counsellor
  • If you don’t have anyone close you can talk to, it may be helpful to talk to other women in a similar situation through our online network.

How having metastatic from the start might influence treatment

There are some advantages for women diagnosed with de novo metastatic breast cancer compared to women 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 women who may even be cured from metastatic breast cancer in this circumstance. 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 women 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 women find this reassuring, knowing that the treatment they are having is working for them.

Read more about treatment

Further information