It can be overwhelming after being told that you have or may have breast cancer. A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'
This support resource can help to guide you, your family, and your friends through this experience.
Information and support
If you need additional information or would like support, you can visit the breast cancer page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.
If you need a translator, call TIS on 13 14 50 or visit the TIS National website.
1. Initial investigation and referral
Sometimes, people with breast cancer may not exhibit any symptoms. Breast cancer can sometimes be detected via regular breast screening (a mammogram) in women aged 50-74 years.
Symptoms of breast cancer may include a change in the shape or size of a breast, a new lump or lumpiness, redness, thickening or dimpling skin, unusual breast pain that does not go away, or changes to your nipples such as discharge, redness and becoming inverted.
Your general practitioner (GP) will look at your armpits to check for lumps.
Initial tests you may have:
Physical examination
Your GP will check the look, feel and shape of your breasts.
Mammogram
A type of x-ray of the breasts. Each breast is pressed between two X-ray plates to take a picture of it. A mammogram can show changes that are too small to feel.
Ultrasound
Soundwaves are used to make a picture of the breasts and/or armpits.
Biopsy
A small sample of breast tissue is taken using a needle to check under a microscope.
Referrals:
If your GP has concerns, you will be referred to a breast cancer specialist at a public hospital or in private practice for more tests. Breast cancer specialists are doctors who are highly trained in breast cancer.
Breast surgeons can be found at the Breast Surgeons of Australia and New Zealand's website.
You can bring a family member or friend with you to your appointments.
Timeframes:
Your specialist appointment should happen within two weeks of referral. If you can’t get an appointment within this time, follow up with your GP.
Questions you might want to ask
- Can I choose whether I go to a public hospital or private practice?
- Can I choose the specialist I see?
- How much will appointments cost me?
2. Diagnosis and staging
A specialist will do more tests to see if you have breast cancer. This process of working out if you have a medical problem is called making a diagnosis. You might have one test or a mix of tests:
A mammogram, ultrasound, and a biopsy (as explained above), along with:
Magnetic resonance imaging (MRI) scan
A scan where a powerful magnet and radio waves are used to create a detailed picture of the breast and can be useful for some women with breast cancer.
These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.
Timeframes:
Results should be available within two weeks from when you have the tests.
Questions you might want to ask
- What is breast cancer?
- What tests will I have?
- How much will tests/appointments cost?
- Where should I be treated, and do I have a choice?
- What stage is my cancer?
- What support services are available to me?
3. Treatment
There are several ways to treat breast cancer. Your specialist will talk to you about your treatment options.
You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.
You might have one treatment or a mix of treatments:
Surgery is where the cancer is cut out. Surgery is almost always done for people with early breast cancer.
Breast-conserving surgery is where only the cancer and a small area around it are cut out. It can also be known as wide local excision or partial mastectomy.
If the lump can’t be felt, a guide wire or other marker will be inserted into the breast by ultrasound or mammogram on the day of your surgery or before, which helps the surgeon find the breast cancer. A local anaesthetic is first injected into the breast, so you don’t feel pain. A mammogram will help ensure the wire/marker is in the correct position before the surgery begins.
Mastectomy is where the breast is removed. You can usually choose to have reconstructive surgery straightaway or later if you have a mastectomy, or not at all. Reconstructive surgery is surgery where a surgeon rebuilds the breast.
Surgery to remove lymph nodes. Some lymph nodes in your armpit may also be removed. This is called sentinel lymph node biopsy or axillary node clearance. This shows if the cancer has spread to the lymph nodes in the armpit and helps with treatment decisions.
Chemotherapy uses drugs to kill cancer cells and stop the cancer growing. It might be used before or after surgery.
Targeted therapy uses drugs to attack specific features of cancer cells to stop the cancer growing.
Endocrine therapy is a type of hormone therapy. It stops your body making certain hormones or blocks the way the hormones work in your body. It helps to reduce the size and slow down the spread of the cancer. You may receive hormone therapy for 5 years, and sometimes longer.
Radiation therapy uses x-rays to kill any cancer cells that may be left in the breast and/or axilla (armpit) after surgery. For people with early breast cancer, radiation therapy is almost always recommended after breast conserving surgery. Radiotherapy is sometimes recommended after mastectomy.
For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available.
Timeframes:
Chemotherapy should start within four weeks of agreeing to your treatment plan, if it is the first treatment you have. Surgery should start within five weeks of agreeing to your treatment plan, if it is the first treatment you have.
You can ask your GP for a referral to another specialist for a second opinion.
Clinical trials
You may be offered to take part in a clinical trial. Clinical trials are used to test whether new treatments are safe and work better than current treatments. Many people with cancer are now living longer, with a better quality of life, because of clinical trials.
Complementary therapies
Speak to your healthcare team about any complementary therapies (including dietary supplements like vitamins) you use or would like to use. Something as common as vitamins might not work well with your treatment.
Risk of lymphoedema
Some treatments for cancer, commonly surgery, involving the breast or lymph nodes in the armpit, may increase your risk of developing lymphoedema (swelling of a body region). Your specialist should discuss this risk with you and arrange for it to be managed appropriately.
For more information on clinical trials, visit the Australian Cancer Trials page.
Questions you might want to ask
- What treatment do you recommend?
- Where will I have to go to have treatment?
- What will treatment cost and how much of the cost will I have to pay myself?
- What activities/exercise will help me during and after treatment?
- Can I still work?
- How will the treatment affect my day-to-day life?
- Who are the people in my team and who is my main contact person?
- What side effects could I have from treatment?
- Who do I contact if I am feeling unwell or have any questions?
- Will treatment affect my ability to have a child?
4. After treatment
Recovery
Cancer treatment can cause physical and emotional changes.
Follow-up care plan
Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:
- who your main contact person is after treatment
- how often you should have check-ups and what tests this will include understanding and dealing with side effects of treatment
- how to get help quickly if you think the cancer has returned or is worse
- how to reduce your risk of future breast cancer
Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.
Other information you may get:
- signs and symptoms to look out for if the cancer returns
- late effects of treatment and the specialists you may need to see
- how to make healthy lifestyle choices to give you the best chance of recovery and staying well.
For more information, visit After Cancer Treatment.
5. If cancer returns
Sometimes cancer can return after treatment. It can come back in the same place or can appear somewhere different in your body. If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.
Treatment will depend on how far the cancer has spread, how fast-growing it might be and the symptoms you are experiencing.
Questions you might want to ask
- Where is the cancer and has it spread?
- What are my treatment options?
- What are the chances that the treatment will work this time?
- Is there a clinical trial available?
- Where else can I get support?
Advance care planning
Your GP or healthcare team may talk with you, your family and carer about your future treatment and medical needs. Advance care directive Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.
For more information, visit After Cancer Treatment.
Palliative care
Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.
Speak to your GP or specialist or visit Palliative Care Australia.
Making treatment decisions
You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.
For more information, visit Advanced Cancer Treatment.
Questions you might want to ask
- What can you do to reduce my symptoms?
- What extra support can I get if my family and friends care for me at home?
- Can you help me to talk to my family about what is happening?
- What support is available for my family or carer?
- Can I be referred to a community support service?
6. Questions of cost
You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be. If you have concerns about costs talk to your healthcare team or a social worker about:
- being bulk-billed or being treated in the public system
- help with accommodation during treatment
- the possible financial impact of your treatment
You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.
7. Further support
Listen to audio in your language
Breast cancer support
You can speak to specially trained staff at Cancer Council on 13 11 20. They can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.
For free resources about breast cancer, or to find support available in your area, call Breast Cancer Network Australia on 1800 500 258 or visit their website.
If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.
For support and advice for carers, call the Carers Association on 1800 242 636.
More support options
Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focussed on the post-treatment survivorship phase
• Telephone: +61 3 9656 5207
• Website: www.petermac.org/cancersurvivorship
beyondblue
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au
Look Good, Feel Better
A non-medical, free community service program dedicated to teaching women how to manage the appearance-related side-effects caused by cancer treatment
• Telephone: 1800 650 960 (Monday to Thursday 9.00am to 5.00pm)
• Website: www.lgfb.org.au
Cancer Australia
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au
Breast Cancer Network Australia
Specific information on breast cancer
• Telephone: 1800 500 258
• Website: http://www.bcna.org.au/
McGrath Foundation
Contact a breast care nurse
• Telephone: 1800 183 338
• Website: www.mcgrathfoundation.com.au
CanTeen
Australian organisation for young people living with cancer offers support, information, and resources
• Telephone: 1800 226 833
• Website: www.canteen.org.au
Care Search: Palliative Care Knowledge Network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au
National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au
NEMICS A common path: Breast cancer
Videos offering support and advice from people who have been through cancer.
• Visit: www.youtube.com/c/ACommonPathCancersupportandadvice
Optimal care pathways have been developed for health professionals and health services. However, patients and carers may find useful information in this version to help understand the processes their treating health professionals are following.