De novo metastatic breast cancer

Sometimes a person's first diagnosis of breast cancer is metastatic breast cancer. This is called ‘de novo’ metastatic breast cancer (metastatic breast cancer from the start).

It means that breast cancer cells have already spread to other parts of the body such as the bones, lungs, liver, or brain.

This diagnosis can feel overwhelming and scary. You have to learn not only about breast cancer, but metastatic breast cancer too.

There are many effective treatments for metastatic breast cancer.

Clinical trials are available that aim to find new and better treatments.

How you may be diagnosed

It can take some time and many tests before the doctors work out the exact diagnosis. This can be a frightening time.

Your diagnosis may come when tests and scans for early breast cancer show it has spread.

It can be distressing to find out that the aim of treatment has suddenly changed from ‘cure’ to ‘control’.

However you learn of your diagnosis, you will probably be referred to several specialists for more tests and appointments.

Your main cancer specialist will be a medical oncologist. Find out who else may be part of your treatment team.

What to ask your doctors

Some people have lots of questions for their doctors. Others don’t know what they need to ask.

If you can, make a list of questions about anything you don’t understand. Take this to your appointment.

Your doctors may not have all the answers when you are first diagnosed. The way you respond to treatment can make it easier for your doctors to answer some questions.

Common emotional responses to a diagnosis

Many people describe this time as overwhelming and exhausting.

You are dealing with a diagnosis of breast cancer and the fact that the cancer has spread to other parts of the body - 'metastasised'. At the same time, you are being asked to make decisions on the treatments being recommended to you.

It is common to feel many different emotions at this time. People say they have had a range of feelings including:

• anger that the cancer wasn’t picked up earlier
• relief to have a diagnosis and treatment plan after multiple tests and scans
• confusion about by why the cancer has spread so quickly
• devastation at how serious the diagnosis is
• guilt that they could have done something differently to prevent metastatic breast cancer.