Every year about 450 New Zealand women are diagnosed with invasive lobular breast cancer (ILC). Unlike most invasive breast cancers which begin in the milk ducts (ductal), ILC starts in the milk lobules and then spreads to the surrounding tissue. ILC cancer cells grow in single file or in single-cell layers that are harder to detect by touch or on a mammogram than the masses (lumps) that form with ductal breast cancers. Dimpling or thickening of the skin is often the first sign of ILC. It may not show up on a mammogram.
Once diagnosed, ILC is graded, staged and tested for hormone or HER2 receptor status, in just the same way as other breast cancers. Very often ILC is hormone receptor positive and endocrine therapy is recommended after surgery and/or radiation.
Because ILC cells grow differently, their pattern of spread to other organs is often different from that seen with other breast cancers. A lack of research on metastatic ILC means the treatments available are the same as for ductal, despite limited evidence of their effectiveness for lobular. There are no standard protocols and clinicians must work with their patients on a case-by-case basis.
Understandably, ILC patients around the world are concerned about the lack of awareness and research on a type of breast cancer that affects up to 15% of those diagnosed.
New Zealand Metavivor Shirley Nesbit explains “My lobular breast cancer was found in my bones when I had a sore hip and it still didn’t show up in my mammogram. The standard imaging can only see it in my bones – only the FAPI-PET scan being trialled found it in other organs”.
Shirley is raising awareness of ILC and calling for more research. “It’s great to see the push for research into lobular breast cancer in other countries. It is not the same as ductal breast cancer, is hard to see on standard imaging and may respond differently to treatment – we just don’t know enough about what works.”
At Shirley’s prompting, BCAC’s Fay Sowerby looked into what’s happening in New Zealand with ILC. Fay noted world-leading research on the cadherin gene (which is important in ILC) at the University of Otago, a clinical trial of a new scanning technique at several NZ sites, and data from the Breast Cancer Register being used to study ILC at the population level. Fay concludes that “The real opportunity now is to connect these pieces into a coordinated national research strategy that moves us from awareness of biological differences to subtype-specific evidence and ultimately to ILC subtype-specific care.” You can read Fay’s report here.
To learn more about ILC, check out this 2024 webinar produced by the Breast Cancer Foundation.
You can also read more about ILC from Breast Cancer Trials here.
27 May 2026
