Leehane Stowers was just 35 when she was diagnosed with breast cancer and felt scared and in the dark as to what her best option was.
"I had all these questions and was just being told no for everything, I didn't really have much understanding of what was going on."
The Auckland woman, who is part Māori and part Samoan, is part of a group of people a new report shows are most at risk of dying from the cancer - the country's third most common.
The research was included in a report from Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register, titled 30,000 voices: Informing a better future for breast cancer in New Zealand and released today on World Cancer Day.
The report, covering 30,000 patients diagnosed from 2003 to 2019, says despite significant improvements in overall survival rates, breast cancer remained deadlier for Māori, Pasifika, and younger women 10 years on from diagnosis.
Pacific women are 52 per cent and Wāhine Māori 33 per cent more likely to die from breast cancer within 10 years than Pākehā.
And Pacific women had the highest rate of stage 3 and 4 breast cancers and of HER2+ (a more aggressive subtype) cancers and more grade 3 tumours than all other ethnicities.
Younger women, aged under 45, had a much lower 10-year survival rate, 82 per cent, than the 45-69 age group, at 89 per cent.
Stowers' story spans six years, visits to multiple oncologists, numerous changes between the medication, and times when she had little understanding of what was going on.
It was 2015 when Stowers was diagnosed with breast cancer. As the doctor walked into the room carrying cancer pamphlets, she started crying.
He hadn't said anything, but she knew what would come next.
She was only at the doctor's clinic to check an injury she thought was fitness-related, but a breast check found something she couldn't even feel.
"I spent a whole month going in for more tests and no one really told me anything. When I found out there was also a cyst in the other breast, I asked if I could have both breasts removed and they said no, but they didn't explain why," she said.
After being diagnosed, she had a mastectomy and fertility treatment and was offered the option of chemotherapy treatment but turned it down.
"I was scared and didn't feel educated enough about it. I didn't think the chemo would guarantee anything, and thought radiation treatment would be less harsh."
Stowers was given the all-clear, and three years of hormone treatments followed, until 2018 when she got a swollen abdomen.
After a week in bed, she went to A&E where she was sent for an ultrasound.
"The ultrasound found a mass on my liver and I had to go through another month of tests before I found out my breast cancer had come back and spread to my liver," she said.
"I didn't know what it meant when my oncologist told me it was terminal. He said I'd be put on palliative care and I'd just wait. He gave me the impression that I wasn't going to be around for much longer."
Stowers saw another oncologist who diagnosed her with hypercalcemia, where her calcium levels were too high and at a life-threatening state, and she was placed on chemo.
"This made me confused because no one had said before that chemo would work for me. Five months on that got me out of that situation, I think it saved my life," she said.
She started on another hormone treatment, but after three months, her scans showed there was more disease progression.
Another oncologist told her the hormone treatment wasn't working and she was given a low-dose chemo which she has been on weekly for the past six months
"I'm feeling the most normal I've ever felt now, I didn't realise the hormone treatment was causing so many side effects."
Stowers' scans just before Christmas showed that her cancer had decreased by over half.
"I've lived another three years since I was told I was terminal. Feeling the way I do now, I feel like I've got lots of years left in me at 41. "
Stowers, who also lost her nana to cancer, says she is sharing her story to encourage others to speak up and not to be shy asking questions.
"Keep asking questions until you get your answers, and talk to as many people as you can to get the information you need.
"One of the hardest things for me was learning I had cancer at 35 years old, and not being told very much, or getting walked through the process at all."
Ah-Leen Rayner, chief executive of Breast Cancer Foundation NZ, said more attention needed to be given to 10-year survival rates rather than the five-year rates, which were often standard practice.
"The improvements in survival are a tribute to our dedicated cancer specialists and the BreastScreen Aotearoa screening programme.
"But we need to stop talking about five-year survival. That's no longer an acceptable measure of success.
"We're still losing more than 650 women to breast cancer every year, and our comprehensive review of the Register data shows our Māori, Pasifika and younger women, and those with larger or more aggressive cancers, are being left behind."
The report found that of all breast cancers diagnosed in 2020, 7 per cent fewer were found by mammogram than in 2019 which it said was likely a result of paused and reduced screening during the Covid-19 lockdown, meaning they were diagnosed later than they should have been.