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.
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.
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:
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.
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 about Treatment for metastatic breast cancer.
Find resources created with and for those who identify as LGBTIQ+ and have been diagnosed with breast cancer, at all stages of treatment
Resources for Indigenous women diagnosed with breast cancer, including stories from other First Nations women about treatments and support
Tips to ensure people in same-sex relationships have access to the right health professionals and support following a diagnosis
Let’s be Upfront about the extra challenges and different needs of LGBTIQ+ people when diagnosed with breast cancer.
Let’s be upfront about LGBTIQ+ communities that are affected by breast cancer.
Understand the main medical terms and acronyms you may find when you are living with a breast cancer diagnosis or going through treatment
Let’s be Upfront about navigating a breast cancer diagnosis as an Aboriginal or Torres Strait Islander.
*This article does not provide medical advice and is intended for informational purposes only.
Please consult a medical professional or healthcare provider if you're seeking medical advice, diagnoses, or treatment.