She always had her routine smears, but Haley Brock had to go back to the doctor four times before the cervical cancer that almost took her womb was detected.
The 31-year-old narrowly avoided a hysterectomy, but the radiation treatments have forced her into medical menopause.
The mum-of-two can never have any more babies. Its not even possible for me to have another child, she says. I would have liked to make that decision myself.
Shes still suffering from the aggressive treatment which was needed to kill the cancer which was not picked up by a smear test, and which her GP initially suggested was just stress.
Mori doctors are urging the Ministry of Health to reconsider postponing a self-swabbing cervical cancer programme they say is more effective, less invasive and more affordable. (First published in August 2020)
READ MORE:* GPs call for HPV self-tests as current cancer screening not as good ‘as it could be’* Cervical cancer: Why women avoid getting smears* Women’s health ‘held together by fax machine’ as Ardern Govt fails to fund modern HPV testing* Women keep dying of preventable cervical cancer while self-test screening delayed
Today, shes grateful to be alive but angry that there is a better, more effective test that could be saving women from getting cervical cancer and dying from it. If I had done that test, maybe things could have been different.
Cervical smears are no longer the best way of preventing cancer, a fact thats been known since at least 2015.
Modelling used by the Ministry of Health has predicted the HPV viral DNA test would be at least 15 per cent more effective in reducing deaths and cancer incidence, and save around $3.2m per year.
The HPV test for cervical cancer is more effective. It would have prevented at least 90 Kiwi women from getting cancer if it had been implemented in 2018, when planned.
That means at least 90 women whose cancer could have been prevented since the planned new programme was shelved by Jacinda Arderns Labour Government in 2018.
Stuff can also reveal the number of those taking smear tests has fallen, with a 10 per cent drop or 30,000 fewer women taking the test from January to October 2020.
This modelling was done in 2016 based on the effectiveness of the HPV test and the fact more women would be likely to take the easier, less invasive test.
Clinicians now say this is likely to be an underestimate, with new research suggesting Mori women would be ten times more likely to do the HPV test by self-swab if it was mailed out to them at home.
The World Health Organisations target for elimination is 4 cases per 100,000. The rate in New Zealand is currently around 8, so would have to halve.
Haley Brock with son Oliver Brock, 2, at their home in Pukekohe, Auckland.
This is entirely possible, says Victoria Universitys Professor Bev Lawton. Think of the uptake there would be, its huge. Its not only the cancer, we are talking about the pre-cancerous changes we can get earlier.
And while the Government delay implementing the programme, the current smear test is getting less effective. This is because as more HPV-vaccinated girls grow up, laboratories get worse at spotting the virus.
For an increasing number of women, this test as a first line of defence does not work.
Its unsafe for any woman who is unable to have the best modern science, and its particularly unsafe for Mori, Lawton says. Its just completely substandard.
The cervical cancer death rate for Mori women is more than twice that of Pkeha. Coverage varies nationwide, with Ministry data showing some parts of the country are screening only half of Mori women. The coverage target of 80 per cent of all eligible women has never been met.
Ethnic minorities, poor, disabled, obese and trans and gender diverse people are under-screened.
In 2018, a parliamentary inquiry said introducing the new test should be done immediately. Any delay in implementing primary HPV screening will have significant adverse effects and risks.
Ginny Niwa was eventually diagnosed with cervical cancer in the UK after having clear smear tests in NZ. In the UK, she was told her cancer would have been there for at least three years. She’s advocating for a new test that the Government has failed to fund. She is pictured with her daughter Indi Niwa, 17 months.
It described unnecessary cervical cancer as a serious threat.
Stuff asked Associate Minister of Health Ayesha Verrall what she thought of diagnoses being missed because of the delay, if she supports funding for primary HPV testing, and when a new programme should be implemented.
In a statement, spokeswoman Ranjani Ponnuchetty said: The Minister is working hard on this issue. Regarding any funding decisions, they are matters for Government Budgets.
Keep a journal of your bleeding
Around mid-2020, Brock started feeling awful. She crawled into bed every night, exhausted. She went to her doctor, who told her she was likely stressed.
Soon afterwards, Brock went for her routine smear. She told the nurse she had been having horrific period cramps which were very unusual. She was told to come back if they got worse.
The smear test result came back negative.
A month later, she started bleeding. Ive always had regular periods, I havent been on contraception for years so I knew there was something going on down there.
Haley Brock with daughter Ellie Brock, 7, and Oliver Brock, 2. She struggles to walk her daughter down the road to school, but has been formally told she is in remission.
She went back to the GP, where she was offered an STI test and given an internal exam before being told everything looked normal. She said she was sent home with instructions to keep a journal of her bleeding for three months.
Two weeks later her husband made her call again. I was so tired because of how much I was bleeding, it was horrendous. She was given an appointment for ten days later.
That GP made an urgent referral to a gynaecologist. Brock thought she was being referred for childbirth-related injury. Instead, she was told she had a four-centimetre tumour that looked cancerous. They talked about hysterectomy and radiation treatment, and I was just like; What? But I did everything right, my smear test was fine how can this be?
I thought smear tests were keeping me safe, which is why I always had one.
Brock had Stage 2B cancer. Over the next seven weeks she endured five rounds of chemotherapy, 27 courses of radiation, and four of brachytherapy, which is an internal radiation therapy.
Shes yet to be officially put in remission, but doctors think the tumour has gone. Yet her body has been ravaged by the treatment, and she still struggles to walk her daughter to school. When I think all of this could have been prevented, I feel sick. I feel ripped off.
We can eradicate this, and we should be.
Ginny Niwa had to have her cervix removed as part of her cancer treatment. She counts herself lucky to have ppi Indi Niwa, 17 months.
Taranaki nurse Ginny Niwa was diagnosed with Stage 1b1 cervical cancer in the United Kingdom in 2015. She had three previous smears in the past five years in New Zealand, in 2010, 2012, and 2014.
Her specialist told her histology results revealed the cancer had been there for around three years.
She continued to have symptoms of spotting after her negative smear result in 2014, which made her go to the doctor while on her OE in the UK. I told the doctor; Ive had smear tests in New Zealand, even more frequently than youre meant to, and theyve all come back normal.
Her mum came to stay with her for six weeks while she had treatment including pelvic lymph node and a radical trachelectomy (RT) or cervix removal. During her pregnancy with daughter Indi, now 17 months, stitches had to be placed in her uterus to prevent premature labour.
Niwa says she wasnt entitled to an obstetrician through the public system as RT was not funded, so had to pay $5000 for care during her high-risk pregnancy. She now pays for a colposcopy to check for a return of any abnormal cells every six months.
Ginny Niwa with daughter Indi.
Its not that I blame the New Zealand system for missing it, but it was definitely scary and frustrating. I want to see a better system in place which is actually accessible for people as well.
If I wasnt a nurse things might be different, and many women wouldnt be able to fight for themselves. Also, we shouldnt have to.
Niwa says a less-invasive test would be a game-changer. That would be massive, Im sure the uptake of it would be huge.
Women in the self-swabbing study run in Auckland by Massey University agreed. Why arent all women offered to do this?; It was so quick and easy; OMG that was so much better; and, I never want to have another smear, some of the feedback reads.
This is what women need.
Smear testing is still an effective defence against cervical cancer, and has reduced the death rate by 70 per cent since screening began in 1990.
Cabinet minister Kiri Allan’s shock cancer diagnosis has highlighted the need for Mori women to get a cervical smear – that could save their life, and reverse the terrible statistics.
What new HPV screening could look like
Massey University molecular microbiologist Collette Bromhead says the HPV test is done on a self-swab thats around the size of a tampon applicator.
The self-screen could be done at the doctors clinic, by the woman or her doctor. It could also be done at home, and sent through the post.
It is a PCR test, like the test for Covid-19, and picks up the levels of HPV virus in the system. It is extremely effective, and it costs less to implement, Bromhead says.
It is likely New Zealand would go with a universal self-screening model. This would mean one routine HPV self-screen every five years, instead of the three years required for the less effective cytology (smear) test.
The exact pathway for treatment is still under discussion by the ministrys National Screening Unit, and will then need to be put out for public consultation.
In Australia, women who test negative are not required to re-test for five years. Those who test positive for medium-risk HPV strains go on to have a cytology smear, which can detect the change in the cells and determine next treatment. Those with a high-risk result go straight to colposcopy.
This is similar to the model New Zealand was planning on implementing in 2017.
Cervical cancer is almost entirely preventable through HPV vaccination, screening and treatment.
The best way to prevent cervical cancer is the HPV vaccine, free for boys and girls aged 9-26 years.
Young people vaccinated by Gardasil will still need to be screened when they age into the system, as the vaccine doesnt cover all cancer-causing HPV viruses.
Ministry of Health National Screening Unit manager Stephanie Chapman said there were many gains in introducing the new screening test. It would take two years from being funded to implement.
