Her mammogram was clear. Three months later, Sarah had stage 3 breast cancer.
Sarah Starkey knew something wasn't right. What she didn't know was that she had extremely dense breasts, or that breast density could make cancer harder to detect on a mammogram. Now she wants other women to have information she never had.
Sarah Starkey had a palpable lump. Breast pain. Nipple changes. A family history of breast cancer.
Then her mammogram came back clear.
Three months later, the 48-year-old mother was diagnosed with stage 3 triple-negative breast cancer.
By then, she had a large tumour and the cancer had spread to multiple lymph nodes.
There was one crucial piece of information Sarah didn't have when that reassuring mammogram result arrived.
She had extremely dense breasts.
“I'd been having mammograms for years. I'd always been clear,” she says.
“But women have no idea that that mammogram might not actually work as well for them.”
‘I thought my boobs were fine’
Sarah had been having regular mammograms since becoming eligible for screening at 45.
When she had her mammogram last September, she was already experiencing breast changes, including pain, nipple changes and a palpable lump.
The mammogram found no evidence of cancer.
In the months that followed, Sarah developed lumps in her armpit and saw three different GPs.
She says breast cancer was not raised as a possible explanation for the armpit lumps, and none of the three GPs examined her breast.
She was initially prescribed antibiotics and later referred for an ultrasound.
Sarah knew something wasn't right.
But she kept coming back to one thing: she'd just had a clear mammogram.
“I kept saying, ‘This can't be related to my breast, can it? Because I've had a clear mammogram.’
“I was living under this false idea that my boobs were fine because I'd had a clear mammogram.”
Private health insurance helped Sarah access further investigation more quickly, eventually leading to a biopsy.
Five days later, her GP called.
“At that point, I knew.”
It was cancer.
What Sarah didn't know
Sarah's cancer diagnosis was devastating.
But it also left her with a question.
Why wasn't she told she had extremely dense breasts?
Breasts are made up of a mixture of fatty, fibrous and glandular tissue. The more fibrous and glandular tissue a woman has, the denser her breasts are.
You can't tell your breast density by looking at your breasts.
You can't feel it.
And having firm or larger breasts doesn't necessarily mean they are dense.
Breast density is identified through breast imaging.
And it matters.
White on white
On a mammogram, fatty breast tissue appears darker.
Dense breast tissue appears white or light grey.
Cancer can appear white too.
That means a tumour can be considerably more difficult to see in dense breast tissue because it may be obscured by the tissue surrounding it.
But there is another reason breast density matters.
Dense breasts are also associated with an increased risk of developing breast cancer.
Health New Zealand says women with higher breast density are two to five times more likely to develop breast cancer than women with low breast density.
Sarah had extremely dense breasts.
But she didn't know it.
So when her mammogram found no evidence of cancer, she had no reason to know that her breast density could make a cancer more difficult to see.
And Sarah is far from the only woman who doesn't know her breast density.
BreastScreen Aotearoa does not currently measure or report breast density as part of routine screening.
So why aren't women being told?
Health NZ says introducing routine breast-density reporting isn't as simple as adding another line to a mammogram result.
National Director Prevention Screening Alana Ewe-Snow says reporting density would need to be supported by clear advice for women, agreed follow-up pathways and access to any additional assessment or imaging that may be appropriate.
There are also questions around cost, equity, workforce and imaging capacity.
Health NZ says it is considering what would be required to introduce breast-density reporting safely and equitably. No decisions have yet been made.
Sarah's position is considerably simpler.
Give women the information.
“Women need to be told if they have dense breast tissue and they need to be told what their options are.”
A clear mammogram isn't a guarantee
None of this means women should stop having mammograms.
Health NZ says mammograms find eight or nine out of 10 cancers in women aged 45 to 69.
But they don't find every cancer.
“A mammogram may look normal even if there is cancer somewhere in a breast,” Ewe-Snow says.
That makes knowing what is normal for your own breasts important, even if you've recently had a clear mammogram.
A new lump, nipple change, unusual discharge, skin change or other persistent change needs to be discussed with a healthcare provider.
And if something doesn't feel right, a recent clear mammogram shouldn't stop that conversation.
Depending on a woman's symptoms and individual risk, further investigation may include ultrasound, three-dimensional mammography, known as tomosynthesis, or MRI.
That doesn't mean every woman with dense breasts needs additional imaging. What is appropriate depends on the individual and should be discussed with a healthcare provider.
But women can only have that conversation if they have the information in the first place.
What happened to Sarah
By the time Sarah was diagnosed, she had a large tumour and cancer had spread to lymph nodes in her armpit and neck.
For a week, she and her family waited for a PET scan believing she could be facing stage 4 disease.
The scan showed no distant spread.
She was diagnosed with stage 3 triple-negative breast cancer, an aggressive form of the disease.
Six months of chemotherapy followed.
Then a mastectomy and full lymph-node clearance.
All 18 lymph nodes removed contained cancer, and chemotherapy had killed only about half of the cancer.
Sarah says she has been classified as having a high risk of recurrence and continues to undergo treatment, with radiation still to come.
Her future, she says, remains “very, very uncertain”.
She has also been privately funding pembrolizumab, known as Keytruda, as part of her treatment. Her family estimates the private treatment costs associated with the immunotherapy have exceeded $80,000.
“It shouldn't come down to whether you can afford additional investigation and treatment yourself,” she says.
Why Sarah is telling us
Sarah can't know whether being told about her breast density would have changed what happened to her.
And that isn't the claim she is making.
What she does know is that she would have wanted the information.
She describes herself as tenacious. She kept going back because she knew something wasn't right.
Not every woman will.
“Women shouldn't have to fight that hard to be heard.”
Sharing something this personal publicly isn't something Sarah ever imagined doing.
But if another woman reads her story, finds out her own breast density or asks questions she might not otherwise have asked, it will have been worth it.
“I just hope that it helps someone else not have to go through what I'm going through.”
Sarah's mammogram was clear.
Her cancer was still there.
And the information she wishes she'd had is simple: her breast density.
So know yours.
And if you don't know, ask.
A note about this story
This article is for general information and awareness and is not a substitute for individual medical advice. Breast density is only one factor in breast cancer risk, and having dense breasts does not mean you have or will develop breast cancer.
Mammograms remain an important breast cancer screening tool. If you notice a new or unusual breast change, speak to your GP or healthcare provider, even if you have recently had a clear mammogram.
Useful links
Information about what breast density means, how it affects mammograms and the different levels of breast density.
Information about breast changes to look for and when to see your doctor.
Information about mammography, screening and other breast imaging.
Information about New Zealand's national breast screening programme and eligibility for free mammograms.
Need to talk to someone?
Breast Cancer Foundation NZ's specialist breast nurses can answer questions about breast health and breast cancer on 0800 226 8773.
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