It can be confronting and overwhelming to be diagnosed with
First steps and what to expect
Here’s what often happens in the first few weeks:
- Tests and scans - You’ll have scans and blood tests to understand where the cancer is and how to best to treat it. Some people also have a
biopsy to check for receptors (oestrogen, progesterone andHER2 ) or specific gene changes. - Meeting your care team - You’ll meet members of your care team, which may include a medical
oncologist , a radiationoncologist , a breast cancer nurse and other clinicians who support your care. Your GP often stays involved as well. - Treatment planning – Together, you’ll talk through your goals, review options and decide on a first treatment. Sometimes extra tests are ordered to make sure the plan matches your cancer’s subtype and situation.
Starting treatment
Many people begin treatment within 2-4 weeks of diagnosis, though it can be sooner or later. If symptoms are causing distress, symptom relief (supportive) care can start straight away. Other things to remember in the early days:
- People close to you may have questions. There are resources to help you decide what to share, when and with whom.
- Emotional support can help. You might need to talk to someone. Peer groups, counsellors and social workers can offer practical strategies for stress, sleep and coping. Telehealth and phone options may be available if getting to appointments is hard.
- It’s OK to ask practical questions. For example, Who is my main contact during working hours? Outside of working hours? What should I do if I feel worse?
If you’re feeling very unwell, tell your care team. Be honest about pain, nausea, breathlessness or anxiety. Being open about your symptoms will help you get the right help and medicines in those early weeks.
Common scans and tests explained
You’ll likely have several types of scans and tests. It may feel like you are getting many different scans. This is because each scan type has its own purpose, strengths and limitations. Used together, they help give your care team see the bigger picture – where the cancer is, how active it is, and how it’s responding to treatment.
How often?
After diagnosis, you may need a scan every 2-4 months until the cancer is stable, then less often. Timing depends on your situation and your treatment. Your care team will tailor this for you.
Types of imaging scans
CT (Computed Tomography)
- Often used to measure the size of
metastases in organs like the liver or lungs. - Can help to show lung inflammation (from some medicines or radiation)
- You may have to drink or receive contrast. Tell your team about any allergies or kidney problems.
PET (Positron Emission Tomography)
- Helpful for seeing active cancer
- Sometimes combined with a CT of specific regions of the body
- Not everyone needs a PET; your care team will advise you if it needs this information.
- Sometimes a PET-CT or
MRI may be used instead, depending on your situation.
- Especially useful for the brain or spine, and sometimes for bone or liver.
- You’ll lie in a tunnel-like scanner; let your care team know if you get claustrophobic – they can help you.
X-ray
- Usually for specific questions (e.g. pain in one area) rather than for whole-body checks.
Other tests
- It is used to determine your cancer’s subtype (based on the presence of oestrogen, progesterone,
HER2 receptors) and can check for gene changes. - A new
biopsy is usually recommended after diseaseprogression . This will determine whether your cancer’s subtype has changed.
Blood tests – Regular blood tests check your overall health, organ function (liver, kidneys), blood counts (red and white cells, platelets) and sometimes
Tumour markers can help in some situations to track trends, but they aren’t reliable for everyone. Your team will explain how (or if) they’ll be used in your care.- Blood tests are usually more frequent than scans and can also monitor treatment side effects.
You may have regular checks and tests depending on your treatment. These help spot and manage side-effects early. Examples include:
- Heart monitoring (usually echocardiogram every 3 months) with some
HER2 -targetd therapies (e.g. Herceptin (trastuzumab) or Enhertu (trastuzumab deruxtecan)). - Full blood counts (often weekly / fortnightly at first, then monthly) with CDK4/6 inhibitors or many chemotherapies.
- Liver function tests for several targeted therapies and chemotherapies.
- Blood sugar tests for alpelisib.
- Thyroid tests for some immunotherapies.
- Dental checks if on bone-strengthening medicines (zoledronic acid or denosumab).
Your care team should let you know which tests you’ll have and how often. If you’re unsure, it’s okay to ask for a simple plan in writing.
Tips for scan days
- Ask about preparation: whether you need to fast, need to drink contrast, or pause certain medicines.
- Bring comfort items: warm socks, loose clothing, music, or something to read while you wait.
- Plan for contrast: drink plenty water afterwards, unless your team advises otherwise.
- Know how you’ll get results: ask when and how results will be shared and who to contact with questions.
Planning and deciding on treatment
Your doctors and care team will work with you to decide about the best treatment for your cancer type. Decisions are based on many factors, including:
- Your cancer’s subtype (hormone receptors and
HER2 ). - Where the cancer is and how active it is.
- Your goals and preferences (what matters most to you).
- Your overall health and other health conditions.
- Previous treatments (if any) and how the cancer responded.
- Access and logistics (travel, costs, time).
Clinical trials that may be suitable for you.
You might hear about “lines of therapy.”
First‑line is the first treatment used for your current situation. If the cancer stops responding to the treatment or side‑effects are hard to manage, your team may suggest a second‑line treatment, and so on.
Tests to determine your MBC subtype
The first step in planning your treatment is usually confirming your subtype. This is the main way doctors will choose your treatment type. This is often done using a
Understanding subtype testing (IHC and ISH)
Two main tests are done on your breast cancer, these are:
Immunohistochemistry (IHC): Looks for hormone receptors (oestrogen and progesterone) and for
If hormone receptors are present, the cancer is HR+, which may respond to endocrine (hormone‑blocking) therapy.
In situ hybridisation (ISH, often called FISH)
Checks for extra copies of the
Note: You may also hear about
If your earlier breast cancer was tested years ago, your team may suggest a new
You can find out more here:
Genomic testing and personalised medicine
Genomic testing looks for specific DNA changes that may help guide your care. Sometimes, results point to targeted treatments and
Genomic testing can help to:
- Identify targeted treatments that may work for your cancer
- Give clues about how your cancer might behave
- Match you with
clinical trials - Support treatment decisions alongside other test results.
Ask your care team if genomic testing is right for you. Not every test changes treatment, and availability/coverage can vary. Genetic counselling is recommended when testing might uncover inherited risk.
Types of genomic testing
Types of genomic testing
Germline genomic testing (inherited cancer-risk genes)
Looks at the DNA you were born with (inherited from your parents). This helps identify inherited mutations (e.g., BRCA1/BRCA2 and others) that can increase breast and other cancer risks.
Results can sometimes open-up specific treatments (e.g., PARP inhibitors for some people with BRCA mutations).
If an inherited mutation is found, family members may be offered testing.
People may be offered germline testing based on factors like strong family history, younger age at diagnosis, or certain subtypes. If you’re not offered testing, you can ask about it. Your team will be able to advise you on eligibility, referrals, and costs.
Tumour molecular profiling/somatic genetic testing
Looks at the DNA inside the cancer cells (not inherited DNA). Cancers grow because of acquired DNA changes; sometimes these changes point to specific drugs or trials.
Examples include changes in PIK3CA (some HR+ cancers), ESR1, NTRK, MSI‑high/TMB‑high, or PD‑L1 testing in certain situations.
Your team will explain whether profiling is likely to help your situation, how results are used, and any costs or trial pathways.
Learn more:
- Germline genomic testing (inherited cancer risk)
- Tumour molecular profiling (somatic testing)
- Ask what decisions the test might change before you proceed with a test.
- Check whether testing is publicly funded, trial‑based, or private, and if genetic counselling is offered.
- Not all genomic findings have an available treatment—your team can help set expectations.
Decision-making tools for you
Making treatment and life decisions can feel overwhelming. You don’t have to do it alone. Tools and supports can help.
- Use decision aids. Ask your nurse or Cancer Council about decision aids. Some are also available online, such as this financial decision aid, BCNA financial Planning guide and can help you weigh pros and cons in plain language.
- Seek second opinions. This is always an option. Your
oncologist or GP can help with a referral. Another perspective can confirm a plan or highlightclinical trials you might consider. - Bring a support person. It’s your right to have someone with you. A support person can help take notes, ask questions and remember details.
- Record consultations (ask first) If it helps, you can request to record appointments so you can listen later. Ask your doctor or care team first to confirm they’re comfortable with you doing this.
- Write your questions Keep a running list on your phone or notebook.
Questions you can ask your oncologist
Here are some questions you could ask your
Tip: Start with your top three questions, then keep the rest for a follow-up appointment if time is short.
About your diagnosis
- What subtype of breast cancer do I have (hormone receptors and HERs)?
- Where has the breast cancer spread to?
- What tests do I still need?
- For each test or scan: What will it tell us and how will it help us make decisions?
About treatment
- What are my treatment options? What treatment do you recommend and why?
- What are the goals of this treatment?
- What benefits and side effects should I expect? How are the side-effects managed?
- How might this affect my day-to-day life (work, travel, driving, exercise, fertility/menopause, sexual health)
- How and when will we know if treatment is working?
- What happens if I don’t have this treatment?
- If my cancer stops responding or side-effects are too hard to manage, what’s next?
- Has my treatment and care been discussed at a multidisciplinary team (MDT) meeting?
- Are there
clinical trials I should consider now or later? What would make me eligible?
About scans and tests
- Which scans and tests are most useful for my situation?
- How often will I have them while things are stable? If things change?
- What side‑effects are you monitoring for with these tests?
- How and when will the results be shared with me? Who will explain them to me?
- If a result is unclear or worrying, what happens next?
Safety and urgent issues
- Which symptoms should I watch for that mean I should call urgently or go to emergency?
- Who is my main contact between appointments? Is there an after-hours number?
- Are there medicines, supplements or vaccines I should avoid or time carefully with treatment?
Daily life and support
- How might my treatment impact on my ability to work? Can you provide a medical certificate if needed?
- Are there activities I should avoid or adjust? What exercise is safe for me?
- Can you refer me to supportive care (e.g. a breast nurse, social worker, psycho-
oncology , physiotherapy, palliative and supportive care for symptom management)? - What financial or practical supports are available (travel assistance, parking, Centrelink, sick leave options)?
Genomic testing and records
- Should I consider germline genomic testing (inherited risk)? If so, will genetic counselling be offered?
- Is tumour molecular profiling (somatic testing) likely to inform my treatment or access to
clinical trials ? - Can I have copies of my reports (pathology, imaging) and a written treatment plan?
- Where can I view results (e.g., patient portal/My Health Record)?
Second opinions and preferences
- Could you help me arrange a second opinion?
- Can we discuss my preferences and priorities (e.g., balancing benefits and side‑effects, ability to travel, time in clinic or hospital versus at home)?
- What decisions can we revisit later if I need more time?
Talking about prognosis
Talking about
When you are first diagnosed, a common question that you might have is ‘how long do I have to live?’. People have different preferences about how much they want to know about their
What ‘
If you want to ask about
- Can we talk about my outlook in terms of best case, most likely and worst case scenario?
- Given what you know about my cancer and how it’s responding, what feels realistic for the next few months? And the longer term?
If you’d rather not know right now (or ever):
- Tell your team: ‘For now, I’d prefer not to hear timelines or numbers’
- You can nominate a support person to receive information on your behalf.
- Ask your team to focus on what happens next, symptom relief, and what to watch for, without timelines.
What we know, honestly:
Metastatic breast cancer isn’t considered curable. Many people live for years, especially when treatment controls the cancer and symptoms are well managed.- Responses vary. Some people have long periods where the cancer is well controlled or not detectable on scans; others need to change treatments more often.
- New treatments and
clinical trials continue to expand options. Ask whether any apply to you now or later.
Take‑away:
You can choose how much information you receive and when. If
Understanding your treatment team
You’ll meet many different specialists who will work together to support you and your care:
- Medical
oncologist - Leads your cancer treatment plan (e.g.endocrine therapy ,targeted therapy ,chemotherapy ,immunotherapy ). They help decide when to start, pause of change your treatments. - Radiation
oncologist - Plans and deliversradiation therapy (if needed), often to relieve symptoms such as pain. - Breast care nurse - Often your day-to-day point of contact, although depending where you are being treated it might be a general cancer nurse. They help explain information, coordinate your care and connects you with support.
- GP - Continues to manage your overall health. Even though you have
metastatic breast cancer and are being seen by several different specialists, it’s very important to continue to see your GP for routine care, prescriptions and vaccinations. - Palliative (or supportive) care specialist - Focuses on symptoms and quality of life at any stage (not just near end of life).
- Allied health – Professionals who support day-to-day wellbeing, such as physiotherapists, occupational therapists, dietitians, psychologists, and social workers. Some people also see ‘Integrative
oncologists ’ for who focus on providing holistic care including evidence-based complementary supportive care such as mindfulness and acupuncture. - Pastoral care - Support for emotional, cultural and spiritual wellbeing, available to everyone, whether or not you are religious.
Don’t be afraid to ask who everyone is and what their role is.
Finding a breast care nurse
Breast care nurses are specialised nurses who can:
- Help you understand your diagnosis and treatment
- Coordinate your care between different doctors
- Provide emotional support to you and the people close to you
- Connect you with practical help (financial, transport, peer support, counselling)
Some hospitals have specialised
Where to find one:
- Ask your
oncologist for a referral to a breast care nurse or cancer care coordinator - McGrath Foundation – helps connect people with a breast care nurse no matter where you are in Australia
- Cancer Council - call their information and support line 13 11 20 to find out about services near you.
Coping with the trauma of diagnosis
It’s completely normal to feel shocked, scared, angry sad or numb when you’re diagnosed with
What might help:
- Give yourself permission to feel whatever you’re feeling. You don’t have to ‘stay positive’ all the time.
- Take things one day at a time. Break tasks into small steps; you can press pause on non-urgent decisions.
- Accept help from family and friends. Let people do practical jobs (meals, lifts, childcare, paperwork). Use the ‘Gather my Crew’ app to coordinate your family and friends.
- Talk to a counsellor or psychologist. Ask your GP about a Mental Health Plan, which provides access to Medicare-subsidised sessions. You can request someone with cancer experience and ask about telehealth if that is easier for you.
- Connect with others who ‘get it’. Consider joining a support group when you’re ready. Many are online (including private Facebook groups) and can specialise to specific groups e.g. young women’s support groups, MBC sub-types (e.g. triple-negative MBC) or particular MBC treatments such as Enhertu.
- Stay informed – use this Info Hub and follow MBCAA on social media to stay informed about programs and supports
- Hear from others living with
metastatic breast cancer. Personal stories can help you feel less alone. You’ll find some stories on this Hub or via trusted organisations like Breast Cancer Network Australia.
Crisis support available 24/7:
- Lifeline: 13 11 14
- Cancer Council Information and Support: 13 11 20
You don’t have to be strong all the time. Asking for help is a sign of strength. Tell your care team how you’re feeling—support is available for you and for the people close to you.
How to share your diagnosis
You’re in charge of what you share, when, and with whom. It’s okay to take time to process your diagnosis before telling others, and it’s okay to tell only a few trusted people. You can always share more later.
To family and friends
- It is fine not to share your diagnosis widely.
- Sometimes you might want time to process your diagnosis yourself before sharing, and that is okay.
- You can choose who in your life you tell, and if or when you are ready to tell them
- Be as honest as you feel comfortable with. You can keep details simple.
- Let people know specific ways they can help (meals, transport, childcare, admin, housework)
- Share this Info Hub if you’d like others to learn about what to expect and how to support you
Consider nominating a contact person to pass on updates so you don’t have to repeat yourself.
To children
Children often sense when something big is happening. Honest, age‑appropriate conversations can reduce fear and confusion. Talking to your children about your diagnosis is important.
- Keep language simple and clear; avoid euphemisms like ‘a bit sick’.
- Reassure them that there are treatments to help control the cancer and manage symptoms
- Let them know your treatment plan, who’s caring for you, and who is caring for them
- Invite questions; it’s okay to say, ‘I don’t know yet, but we’ll ask and find out together’
- Use resources designed for kids: Canteen Australia
Example phrases
- Young children (under ~8): “The doctors found cancer in my body. I’m having treatment to help it. You’ll be looked after by me/Dad/Grandma, and if plans change, we’ll tell you.”
- Tweens/teens: “I have
metastatic breast cancer. It can be treated and managed, sometimes for many years, but it isn’t considered curable. We’ll always keep you in the loop about my scans and any treatment changes.”
Common worry to address
- Kids often worry “Who will look after me?” Reassure them they’ll always be cared for and share what the plan is if things change.
- “You will always be cared for. If I’m at the hospital, [Dad] and [Aunty] will be here. We have a plan.”
To your workplace
You’re not legally required to disclose your diagnosis to your employer, but letting them know some information can help them support you
- Focus on practical matters: time off for appointments, flexibility (start/finish times, work-from-home), temporary or longer-term changes in working hours or duties.
- Know your rights: Fair Work Comission. Ask about workplace policies, leave options and who your main HR contact is.
You can request privacy and agree on who will be told.