Janice Wall (left) and cousin Rona Wall were both diagnosed with breast cancer. They think wahine Māori should be eligible for free mammograms before the starting age of 45. Photo / L McMichael
Kaua e whakamā. Don't be shy to ask for help.
Janice Wall is not normally shy - till now.
Although the Waitahanui woman is an active promoter of Māori women's health, Janice found herself strangely reluctant to make a appointment to check out the strange lump in her breast.
Her cousin Rona Wall felt the same. Despite repeated doctor's visits, it was years before Rona summoned up the courage to push for a mammogram to investigate a breast lump.
For Janice, 41, the proud mother of a new baby daughter, finding a lump was a shock.
But, not enough to make her call the doctor. Instead, she did what many women do.
"I tried to ignore it," Janice says.
She was scared of going to the doctor, scared of having a mammogram, scared the result would be positive.
But Janice had reckoned without her mother Josie Wall, who pushed her to seek help. She also shared her story with Rona, whose advice was the same: get a check.
Janice talked to her GP, who referred her for a mammogram. But the appointment was slow in coming through. After five weeks of waiting, Janice went back to Taupō Medical Centre and saw nurse practitioner Hine Loughlin, who chased it up. The mammogram revealed a lump.
Next were two specialist assessments, with both specialists saying they did not think the lump looked suspicious. Janice had a biopsy, then heard nothing further. The next communication was an email, saying she had been scheduled for breast surgery. Janice rang the hospital.
"I said 'what am I scheduled for?' And the poor admin lady had to tell me [it was cancer] over the phone. And I was lucky, I was at my sister's place. I was freaking out because I had an eight-week-old baby and an 11-year-old niece who I had just taken into care."
The lump was stage one cancer. It was removed two weeks ago, along with some sentinel lymph nodes from under her arm. Janice is presently recovering and praises the skill and care of surgeon Anupam Modi and breast cancer support nurse Amanda.
"Even though I have had the operation, I still have cancer. It doesn't just disappear."
Now she's teamed up with Rona to tell their stories in an effort to encourage other wāhine Māori of the importance of getting breast checks.
Rona, 39, was only 16 when she had a lump removed from her breast. When she was 24, she found another. Because she had had a baby, the doctor told her it was likely a blocked milk duct.
But the lump never went away despite more doctor's visits. Rona says it got to the point where her breast started to look deformed. In May 2019 she plucked up the courage to visit GP Lance O'Sullivan in Rotorua, who took her concerns seriously.
"I said I just wanted peace of mind. He put me through for an urgent mammogram and boom! I had stage three breast cancer, had a full mastectomy and a reconstruction and it had spread to my lymph nodes."
Rona intends to pursue her case via the office of the Health and Disability Commissioner and says it's vital for women, who know their bodies best, to push to have their concerns heard - although she adds, they shouldn't have to.
Both Rona and Janice say it's worrying that many women are diagnosed with breast cancer before they reach the age for free mammograms and think wāhine Māori should get mammograms younger.
Women have to be 45 before they qualify for Breastscreen Aotearoa's free two-yearly mammograms although they are recommended from age 40 onwards. Cost is also a barrier. To self-fund a mammogram in Taupō is $178.
Janice says women need to demand the services they require and if it helps them feel more comfortable, they should approach a Māori clinician they can trust. Even despite her experience with women's health issues, bringing Smear Your Mea cervical screening to marae around the Tūwharetoa rohe and collecting for the Breast Cancer Foundation, Janice still felt embarrassed about asking for help.
"For us, it's a cultural barrier," Janice says. "It's first recognising that it's a lump, second being able to talk to people around you and thirdly being able to take encouragement from women to go and get it checked up. If you don't have that around you, women are just going to sweep it under the carpet because sometimes it's easier to pretend nothing is wrong than confront the possibility of cancer.
"I want to encourage our Māori women to go and get tested and have the follow ups and if they are not following up, to make sure that they follow it up."
The Breast Cancer Foundation says breast cancer is the most common cancer for Kiwi women (although it also affects men too). While it is less common in young women, 6 per cent of breast cancer occurs under the age of 40. Wāhine Māori are more likely to be diagnosed with breast cancer than non-Māori and more likely to die of the disease. In 2015 the mortality rate for wāhine Māori was 1.8 times higher than the non-Māori rate and 93 wāhine Māori died.
This month is Breast Cancer Awareness Month. To donate, visit breastcancerfoundation.org.nz.
Local Democracy Reporting obtained the decision through the court.