Breast Cancer Screening and NF1: What Women in Western Australia Need to Know
- Jul 9
- 3 min read
Updated: Jul 16
Breast cancer is common in Australia, but for women living with neurofibromatosis type 1 (NF1), the conversation needs to start earlier. In the general population, breast cancer risk increases with age, and most breast cancers are diagnosed in women over 50. For women with NF1, however, the risk of developing breast cancer before 50 is five times higher than for women without NF1. This means breast awareness and screening plans should not be left until midlife. The clinical recommendation is to start screening yearly from the age of 30.
Challenges in Breast Checks with NF1
NF1 can already make breast checks feel more complicated. Neurofibromas and other NF-related changes may make it harder to know what is “normal” for your body. That is why it is important to talk with a GP, specialist, or genetics service about your personal breast cancer risk and what type of screening is right for you.
Recommended Screening for Women with NF1
For women with NF1, yearly breast screening from age 30 is recommended in specialist guidance. Screening may involve:
Clinical breast exam
Mammogram
Breast MRI
Ultrasound
A combination of these tests
The choice of screening depends on age, breast density, symptoms, family history, and medical advice. A mammogram uses a low-dose X-ray to look for early signs of cancer, while MRI can be useful for younger women because breast tissue is often denser before menopause, which can make it more difficult for mammograms to detect changes that may indicate cancer.
Screening Services in Western Australia
In Western Australia, BreastScreen WA provides free screening mammograms every two years for women aged 40 and over who have no breast symptoms, with women aged 50 to 74 actively encouraged to attend. This is an important service, but it does not fully meet the needs of women with NF1 who are recommended to start screening a decade earlier and require more frequent screening.
If you are under the age of 40, have NF1, and are unsure what screening you should be having, the best first step is to speak with your GP or specialist and ask for a personalised screening plan. Explain your increased risk and ask about what to do next.
You may ask your GP to refer you via the Central Referral Service (CRS) to the High-Risk Breast Screening Clinic for a bulk-billed MRI. Alternatively, you may choose to access screening through a private provider, which may involve out-of-pocket costs. Referral discussion should begin in your late 20s so that you are established within the system and eligible for a breast screen MRI when you turn 30 years old. It usually takes a few months to get in. You can ask your GP to send in a referral.
Screening vs Symptom Checking
It is also important to know the difference between screening and checking a symptom. Screening is for people who do not have symptoms. If you notice a new lump, nipple change, discharge, skin dimpling, swelling, persistent pain, or any breast change that is unusual for you, do not wait for a routine screening appointment. Book in with your GP as soon as possible so the change can be assessed.
Being aware of what is normal for your breasts and recognising when changes occur is crucial for monitoring breast cancer. If you notice anything abnormal, consult with your GP as soon as possible. Be Breast Aware!
Advocating for Your Health
Breast cancer is often easier to treat when detected early. For people with NF1 in WA, the key message is simple: know your body, ask about your risk, and do not be afraid to advocate for earlier screening.
Sources and further reading
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