Asking about metastatic breast cancer prognosis

When you are diagnosed with metastatic breast cancer, it is normal to wonder how quickly the cancer might progress and what your life expectancy might be. This is known as ‘prognosis’ – the likely outcome or course of the disease.

One of the first things people often ask when they find out their breast cancer has spread is ‘How long do I have to live?’.

A prognosis in metastatic breast cancer varies widely.

Some people want to know, others do not. This is your choice. You don’t have to discuss your prognosis with your doctors or anyone else if you don't want to.

Living well for many years with treatment

It is very common for people with metastatic breast cancer to be afraid of their prognosis. They believe their lifespan will be very short.

Although metastatic breast cancer is currently incurable, it is often very treatable. Many treatments are available now, which is why people are living longer. As new treatments become available, the average survival time is improving.

Most people live well for many years and often remain continually on treatment. They change drugs when their disease progresses, or side effects are too much to tolerate. 

Decide what you want to know

What one person wants to know about their prognosis may be different from another.

Some people simply want to know if they will be able to book an overseas holiday, reach a certain life goal or attend an important event.

Before you ask, you need to consider the impact of receiving this information.

It’s also ok to tell your doctor you don’t currently want information about your prognosis. Some people prefer not to speak about it at all. Others prefer their oncologist discusses it with family members instead.

What may affect the outcome

It’s important to remember that people and cancers are all different. Some subtypes of breast cancer have a better prognosis than others. This makes it impossible to predict life expectancy.

Many different factors affect survival times for people with metastatic breast cancer, including:

• the subtype of breast cancer (hormone receptor-positive, HER2-positive and triple negative)
• where the metastases appear, such as in the bones, liver, lung or brain
• how the cancer responds to treatment
• how long ago you finished treatment for early breast cancer
• how well you tolerate each treatment and any side effects
• any other health issues you have that are not related to cancer treatment. 

Talk to your healthcare team

When you are ready, talk to your medical oncologist. They know your subtype of breast cancer and how your disease is likely to progress.

Sometimes, it's better for doctors to talk about survival times as a range of scenarios. They may be able to give you ‘best case’, ‘most likely’ and ‘worst case’ scenarios, based on your individual situation.

If you choose to ask about the prognosis, it's important to remember this is only an estimate.

Find counselling support

You may want to talk to someone about your diagnosis or about the prognosis. Or you may need advice to help you decide how much you want to know.

Ask your treating team for a referral to a psychologist who specialises in cancer, so you can talk about your concerns and fears.

Our Helpline is also here to connect you with information and support. For other ways to find support, read Psychology and counselling support.

Consider clinical trials for metastatic breast cancer

Clinical trials often show the average 'progression-free survival' and 'overall survival' of people who try a new treatment or treatment combination.

However, clinical trial participants are often fitter and healthier than the wider population. The trial may not be an accurate assessment in a 'real world' population. 

We encourage you and your family to talk to your treating team about clinical trials, so you can be reassured that you can do well with treatment.

Resources

Video: New and emerging treatments for metastatic breast cancer
The importance and availability of clinical trials for those living with metastatic breast cancer.

Video: Living well with metastatic breast cancer
A medical and consumer panel discussion on the challenges around living with metastatic breast cancer. Topics include managing stress, uncertainty and anxiety.

Podcast: Metastatic breast cancer
Kellie Curtain talks to medical oncologist Professor Fran Boyle and Georgie Fyfe-Jamieson. Georgie was diagnosed with metastatic breast cancer in 2017. They discuss treatment decisions, dealing with anxiety and uncertainty, and living well despite the challenges.