Ovarian cancer: Why under-diagnosed Kiwi women face devastating outcomes
Kim Lannon thought she was burnt out. It was the end of 2021, and the assistant principal of a central North Island primary school felt sick in the mornings. She had led teachers and pupils through a year of Covid disruptions and was losing weight. She often felt as though she might throw up.
Three months before, she had gone to her GP with abdominal pain, which was diagnosed as indigestion. When the then-53-year-old needed to sit down to rest, a relieving teacher raised the alarm. Lannon recalls, “The teacher said, ‘This is so abnormal. Have you seen a doctor?’
“I was so tired. I couldn’t stand up when I was cooking dinner. I went to the doctor and she touched my pelvic area and it felt like I had hit the roof.’’
Two months later, tests confirmed she had ovarian cancer – aggressive and stage 4, it had metastasised and she has no chance of surviving it. Two years on, 56-year-old Lannon no longer works, has paid for some drugs that aren’t publicly funded, and is on a treatment plan. But near the end of July she was told she had very little time left.
Before her diagnosis, Lannon had never heard of ovarian cancer. Breast cancer is a mainly female cancer that is widely known, but ovarian cancer has symptoms that are often undiagnosed and there is no screening programme for it. In New Zealand, ovarian cancer is the most deadly form of gynaecological cancer. Every day, one woman is diagnosed with ovarian cancer; each week, five women die of it – that’s about 260 women dying annually, often young and often living shorter lives than if they’d been diagnosed in Australia, Scandinavia or England.
Our survival rates are low compared with other countries against which we benchmark ourselves, such as Norway, Denmark, the UK and Australia. Oncologists point to survival rates across the Tasman, where half of all the women diagnosed live beyond five years. Here, only a third makes that distance.
Ovarian cancer survival rates here have not increased at the same rate as Australia’s in the past 20 years, and critics say it is because we don’t have the same access to drugs and treatment. Most cancer is caught at stage 3, because symptoms are often not picked up – one study found nine out of 10 women with ovarian cancer had presented to their GP with symptoms before the cancer was detected.
Lannon has medical insurance that has gone towards some unfunded drugs. But she has paid for others, including about $15,000 on bevacizumab (Avastin) – a drug that slows cancer growth and gives women a longer lifespan – which her insurance only partly subsidises. In a report to the government’s health select committee last year, the Cure Our Ovarian Cancer charitable trust explained that ovarian cancer accounts for more than half of all gynaecological cancer deaths. It said we have the worst emergency ovarian cancer diagnosis rate of comparable health systems: 42% of women diagnosed via an emergency department will be dead within a year, compared with 17% diagnosed after a GP visit. Almost half of all New Zealand women are diagnosed when they turn up at EDs in terrible pain.
Jane Ludemann is a case in point. She was 32 when she went to Christchurch Hospital needing emergency surgery – a 6cm tumour had made her ovary twist, cutting off the blood supply and causing extreme pain. The optometrist had been back and forth to the doctor over the previous two years. Displaying eight of 10 ovarian cancer symptoms, she wondered if she was a hypochondriac: “I even saw two specialists and not one suggested the possibility of ovarian cancer.”
When finally detected, her cancer (low-grade serous carcinoma) had only just spread: if it had been caught earlier, she would have been cured. She has been on cancer treatment ever since – a 12-weekly injection and a daily tablet, both of which are funded.