The cancer her mammogram missed
When Sarah Starkey received the all-clear following a mammogram last September, she believed breast cancer had effectively been ruled out.
It hadn't.
Three months later, Starkey, 48, a Swannanoa mother and volunteer firefighter, 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.
What Starkey didn't know when that reassuring mammogram result arrived was that 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.”
Now, as she continues treatment and faces an uncertain future, Starkey wants other women to know their breast density.
BreastScreen Aotearoa does not currently measure or report breast density as part of routine screening.
‘I thought my breasts were fine’
Starkey had been having regular mammograms since becoming eligible for screening at 45.
When she had the mammogram last September, however, she already had concerns about her breasts, including pain, nipple changes and a palpable lump. She also had a family history of breast cancer.
The mammogram found no evidence of cancer.
In the months that followed, Starkey developed lumps in her armpit and saw three different GPs.
Starkey says breast cancer was not raised with her 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.
“I knew there was something wrong,” she says.
But the clear mammogram remained in the back of her mind.
“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 her access further investigation more quickly, eventually leading to a biopsy.
Five days later, her GP called.
“At that point, I knew.”
The biopsy had found cancer.
An uncertain future
Starkey 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. Instead, Starkey was diagnosed with stage 3 triple-negative breast cancer, an aggressive form of the disease.
She underwent six months of chemotherapy followed by a mastectomy and full lymph-node clearance.
All 18 lymph nodes removed contained cancer, and chemotherapy had killed only about half of the cancer.
Starkey says she has been classified as having a high risk of recurrence. She is undergoing further treatment, with radiation still to come.
Her future, she says, remains “very, very uncertain”.
Why breast density matters
For Starkey, one question has become impossible to ignore.
Why wasn't she told she had extremely dense breasts?
Breasts are made up of fatty, fibrous and glandular tissue. The greater the proportion of fibrous and glandular tissue, the denser the breast.
Breast density cannot be determined by how breasts look or feel. It is identified through breast imaging.
And it matters for two reasons.
Women with dense breasts have an increased risk of developing breast cancer, but density can also make cancer more difficult to detect on a standard mammogram.
On a mammogram, fatty tissue appears darker, while dense breast tissue appears white or light grey.
Cancer can also appear white.
That means a tumour can be much more difficult to distinguish against dense tissue and, in some cases, can be masked by it.
Health NZ says women with higher breast density are two to five times more likely to develop breast cancer than women with low breast density.
For Starkey, who had extremely dense breasts, that is what makes the clear mammogram she received while already experiencing breast changes so significant.
She knew the mammogram had found no evidence of cancer.
What she didn't know was that her breast density could make cancer more difficult to see on that mammogram.
Depending on a woman's symptoms and individual risk, other imaging can include ultrasound, three-dimensional mammography, known as tomosynthesis, and MRI.
Which imaging is appropriate depends on the individual and should be discussed with a healthcare provider.
National Director Prevention Screening Alana Ewe-Snow says introducing routine density reporting would need to be accompanied by clear advice, agreed follow-up pathways and access to any additional assessment or imaging that may be appropriate.
Health NZ says it is also considering costs, equity implications and workforce capacity. No decisions have yet been made.
For Starkey, the argument is much 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
Starkey is not suggesting women stop having mammograms.
Health NZ says mammograms find eight or nine out of 10 cancers in women aged 45 to 69, but acknowledges they do not find every cancer.
“A mammogram may look normal even if there is cancer somewhere in a breast,” Ewe-Snow says.
Women are advised to look for changes between mammograms and talk to their healthcare provider if they notice symptoms.
For Starkey, that message is critical. Her clear result influenced how she interpreted what was happening in the months that followed.
Starkey 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.”
The price of treatment
Starkey has been privately funding pembrolizumab, known as Keytruda, as part of her treatment.
Her family estimates the private treatment costs associated with the immunotherapy have now exceeded $80,000.
“It's not just the drug that you pay for, it's the administration of it,” she says.
“It was roughly $10,000 a month.”
For Starkey, being able to use private health insurance during her diagnosis and later pay for treatment has made her acutely aware that other women may not have the same options.
“It shouldn't come down to whether you can afford additional investigation and treatment yourself.”
Walking for Sarah
Through the uncertainty of treatment, Starkey says the support of the firefighting community has been extraordinary.
It began in Murchison, with a brigade and community she had no previous connection to.
“The Murchison brigade started fundraising even though I had no connection with them. One very tenacious young woman decided what was happening wasn't okay and rallied their community.”
Starkey and one of her sons travelled to Murchison for the fundraiser, which raised more than $10,000.
Then her own brigade picked up the baton.
On September 18, firefighters from Swannanoa Volunteer Fire Brigade and neighbouring brigades set off at 3.30am for the 58.5km Walk for Sarah, raising over $40,000 to help Starkey and her family with the financial impact of her treatment.
“I'm incredibly humbled by the amount of support they have given me and my family.”
Putting her story into the public arena was never something Starkey expected to do. She decided to speak publicly in the hope her experience might help another woman.
“I just hope that it helps someone else not have to go through what I'm going through.”
Her future may be uncertain, but the message she wants other women to take from her experience isn't.
Know your breasts.
Know your breast density.
And if something doesn't feel right, keep asking questions.
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