New diagnosis of metastatic breast cancer

Being diagnosed with metastatic breast cancer can be a huge shock. Whether you’ve previously had early breast cancer, or your first diagnosis is metastatic, you may find it hard to make sense of what is happening.

We have practical tips for the first few weeks and months, including those shared by people with experience of metastatic breast cancer.

These can help you find your way and feel more in control. For many people, feeling in control helps them manage the emotional and practical issues that come with diagnosis.

Feelings of distress and anxiety are common but there are ways to cope with the emotions of a diagnosis.

BCNA Helpline is also here for support and information.

Try to be patient

It's very important that your medical team works out an exact diagnosis. It can take time to know what type of cancer you have, and where it has spread to.

During this process you will often have to have lots of different tests, such as:

• blood test
• CT scan
• PET scan
• whole body bone scan
• biopsy. 

Sometimes, results can take up to a week to come back. Waiting is often scary, and you might feel frustrated that it's taking so long. Try to remember, doctors need all the right information before making decisions or recommendations.

Your medical team will do everything to get answers as fast as possible. If they are worried about how you are doing or how long things are taking, they will let you know.

If you need support:

• contact our Helpline
• connect with people who know what you're going through in our Online Network.

Take your time

You may suddenly have a lot to read and understand about different treatments.

It’s helpful to know that you usually have time to think about what’s right for you. You probably won't have to rush into making decisions about treatment. 

If you need to, and your team says it's safe, take a week or 2 so you can:

• think about what you want to do, which may not be the same as what people close to you think
• talk about the options with friends, family or support groups
• ask for a second opinion, if you want to
• plan the support you will need while you are having treatment.

This may help you to decide what’s most important.

Taking time often doesn’t affect the outcome of your treatment. It can, however, make a big difference to how prepared and in control you feel.

Read about Treatments for metastatic breast cancer.

Understand your diagnosis

Take time to understand what your diagnosis means for you. We explain what metastatic breast cancer is.

Your test reports will have details about the type of cancer you have and where it has spread to. You can ask your GP or medical oncologist for a copy of your reports if you would like them.

Understand your treatment options

Most people find that they cope better when they know what to expect.

Once you know the type of metastatic breast cancer you have, read through the treatment options.

Everyone is different, so you need to find the level of information that suits you.

Other Australian and international websites have breast cancer information you can trust. Go to Reliable breast cancer websites. Remember that not everything will be relevant to your specific diagnosis.

If you have questions, talk to a member of your treating team.

Find a medical team that will work for you and with you

When you live with metastatic breast cancer, you will be dealing with your medical specialists for a long time. It’s important to find a treating team you can trust and who make you feel cared for.

Find out who is usually on your Treating team for metastatic breast cancer and how to find them. They may also refer you to allied health professionals to help you manage the disease.

Ask for second opinions if you think you need them.

Ask questions

Your medical team expects you to have questions about your treatment and care. Ask anything that will help you understand your situation and the treatment plan they are proposing.

Before appointments, write a list of the questions you want to ask. Put the most important ones at the top in case you don’t have time for all of them.

Not sure what to ask? Our members have created a list of what they found useful: Questions to ask when diagnosed with metastatic breast cancer.

Keep records

Try to keep a record of all the information, including any test results, you receive.

To help, take a family member or friend to appointments. They can help by taking notes about what the health professional says.

Keep a record of your bills and any Medicare or private health fund rebates you receive. This helps you stay on top of your expenses.

Store your medical or financial records in one secure place.

Understand the out of pocket costs

Your treatment will take place over a long period of time. Costs can add up, especially if you’re in the private health system.

Before you have tests, surgery or other treatment, it’s important to find out your ‘out of pocket’ costs. This means the cost or ‘gap’ that Medicare and your private health insurer do not cover.

Talk to your doctors and, if you have one, your private health insurer, before you decision on treatments. You can ask for a second opinion on costs if you need to.

Listen to shared experiences

People who have experienced breast cancer share their insights into what helped them feel supported.

• Seeking information after a metastatic breast cancer diagnosis

Resources

Video: Just diagnosed with metastatic breast cancer, what’s next?
Video: Living well with metastatic breast cancer
Video: Prioritising me - setting healthy boundaries
Podcast: Bittersweet: Living with Metastatic Disease
Podcast: D-Day: diagnosis shock
Podcast: In conversation with Kala and Emily: Living with metastatic breast cancer