The sneaky breast cancer I almost missed — and how other women can look out for it

The moment the tips of my fingers detected a lump in my breast, a white, cold fear flooded through me.

It was a nondescript day during the usual end-of-year chaos, so the mental turbulence of receiving the eventual breast cancer diagnosis mingled with prize-givings and school concerts.

To steady my mind, I reassured myself that early-stage breast cancer was curable, my doctors were confident and the course was clear.

So, when my surgeon told me after she had removed the tumour that there was also a second type of cancer in my breast, I fell apart.

By this point, I had undergone a mammogram and an ultrasound and there was no hint of a second cancer.

The original tumour was obvious to the touch, but neither I nor the doctors who examined me had detected any other change.

A few weeks earlier, I didn’t know there were different forms of breast cancer. Now, the disease was landing a one-two punch.

The second blow had me reeling because my doctors had no idea how big the cancer was, or where it was located.

I now know all of that is typical of this type of breast cancer — including the lack of awareness.

The second cancer I had is called lobular breast cancer.

No-one I’ve spoken to outside of medical circles or cancer support groups has heard of it.

Most women I’ve told about my diagnosis are visibly shocked to discover there’s a detection-evading form of the disease.

So, over the past few months, I’ve gone back to the clinicians who treated me and other experts in the field to find out what we know about lobular breast cancer, and how women can look out for it.

How common is lobular breast cancer?

Lobular breast cancer accounts for 10-15 per cent of all breast cancers.

Around the world and in Australia it is on the rise.

In the four years to 1990, lobular cancer accounted for about 8 per cent of Australian breast cancer cases.

By 2019, that had risen to around 13 per cent, which is between 2,000 and 3,000 women per year.

If the number of lobular breast cancer cases were recorded separately from other breast cancers, lobular would be more common in Australian women than ovarian and cervical cancer.

And yet there is only one government-funded Australian project researching lobular cancer.

The National Health and Medical Research Council said that in the past 12 years, it had only received one application that contained the term “lobular”.

Cancer researcher Dr Amy McCart Reed from the University of Queensland is working on the project.

She said there was a strong push in the US to raise awareness about lobular breast cancer and drive more research funding towards it.

“In Australia, not a huge amount of lobular breast cancer research is undertaken,” she said.

Her team is looking at the special features of lobular cancer cells to see if they can find a drug that could target them.

“We should have targeted therapies for lobular breast cancer patients because these tumours are inherently different,” she said.

How is lobular cancer different to other types of breast cancer?

The most distinct feature of lobular cancer is that it often grows in single-file strands of cells that spread out through the tissue.

This was clear to me when Professor Andrew Field — the pathologist who discovered lobular cancer in my breast — showed me images of the two cancers I was diagnosed with.

At his laboratory at St Vincent’s Hospital in Sydney, he pulled up a photo of the lump I had removed.

The cancerous mass is obvious to a naked eye, but what was hiding alongside it took a microscope to find.

In an astonishing stroke of good luck (which he called “doing his job”), when Professor Field examined the tumour, he spotted cells of lobular cancer in the thin margin around it.

Even on the images he showed me under a microscope, it’s hard to discern the strings of cells that spread out like lines of little ants.

Because of what Professor Field discovered, I went back for more extensive surgery, which revealed multiple sites (or foci) of lobular cancer throughout my breast.

“We found 13 of these little foci and they are very separate from each other,” Professor Field said.

It is this diffuse growth pattern that helps lobular cancer stay hidden and means it is often diagnosed at a more advanced stage.

Why is lobular breast cancer harder to detect on medical images?

Before we go any further, it’s important to note that mammograms are effective tools for picking up breast cancer.

In fact, Australia’s breast screen program, which uses mammograms, detects about half of all invasive breast cancer cases in women aged 50–74 and nearly 60 per cent of those are caught early.

That said, none of the 13 places lobular cancer set up shop in my breast showed up on my mammogram.

So, I took my images to radiologist Professor Mary Rickard, who specialises in breast imaging at the Sydney Breast Clinic, to find out if she could see anything other radiologists missed.

She couldn’t.

Because lobular cancer forms as strings of cells, it doesn’t always show up as a discernible shape on a mammogram.

What made it extra difficult was breast density.

My breasts happen to be extremely dense. In fact, my surgeon once described my mammogram as “like looking at a snowstorm”.

When you look at a mammogram, the white bits are the glands, ducts and fibrous tissue; the black is fatty tissue.

Women who have dense breasts, or more fibro-glandular tissue, will have more white show up on a mammogram.

Because radiologists look for changes in the shape or pattern of the tissue, cancers can be hard to spot in mammograms for women with dense breasts.

“The denser the breast, the more difficult to find a cancer generally, and lobular is more difficult than other cancers,” Professor Rickard said.

What should women do to check for lobular cancer?

Professor Rickard wants all women who have a mammogram to know their breast density, which is rated from A to D, with D being the most dense.

“We would normally recommend that anybody who has a C or D density went on to ultrasound examination,” she said.

Ultrasound imaging uses high-frequency soundwaves to examine internal structures, so it can be useful for finding tumours in dense breasts.

But Professor Rickard said this technique could also struggle to identify a lobular cancer that has grown in between the breast tissue, rather than as a mass.

“Mammograms are not sensitive for it, ultrasound is not sensitive for it,” she said.

That’s not to say they will never pick it up, but rather that women who are still worried should consider a form of imaging that uses an injected contrast dye.

Professor Rickard said MRIs and contrast-enhanced mammography detect 90 to 95 per cent of cancers.

“All tumours are more likely to be picked up by a contrast image,” she said.

Why you should ‘advocate strongly for yourself’

Unfortunately, the government does not subsidise contrast mammograms and only offers a subsidy for MRI to very high-risk patients.

But knowing your own breasts is free.

That’s why women are now recommended to not just check for lumps, but to be “breast aware”.

Professor Rickard said that meant knowing the size and shape of your breasts and looking for any change such as a thickening or hardening, the skin or nipple pulling in, discharge from the nipple, or distortion in the shape of the breast.

“People need to be aware that their breast looks different, feels different, not just that they have a lump,” she said.

Vicki Durston from the Breast Cancer Network Australia said her organisation now promoted “breast awareness”, encouraging women to be familiar with their breasts so they could pick up changes early.

“If you notice a change that is unusual for you, it is important you see your doctor as soon as possible,” she said.

Dr McCart Reed said many lobular patients reported a sense of thinking something was not right.

She wants women to know they should see a doctor about any changes they notice and to follow up if they still think something is wrong.

“Advocate strongly for yourself,” she said.

It’s now been four years since the day I sat across from my breast surgeon trying to wrap my head around having the misfortune of being diagnosed with two types of breast cancer at once.

Now, I’m thankful I did, because the one that was possibly the biggest threat would have gone unnoticed, had it not been for the luck of finding the other one.