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.
Now 38, Ludemann founded Cure Our Ovarian Cancer and is trying to raise money for research while also raising awareness about ovarian cancer.
In other countries, diagnosis is improving, but she is alarmed that although prostate cancer survival rates have more than doubled since the 1970s, rates for ovarian cancer have not.
She says restricted ultrasounds (the best screening tool to check for symptoms) and late diagnosis are huge issues. Since 2000, only $550,000 has been spent here on ovarian cancer research.
“When breast cancer is caught early, doctors can say they’ve got a really good chance of curing you. There are huge inequities with ovarian cancer; how far behind it is in treatment. I feel really passionately about research because ovarian cancer hasn’t had that investment that other conditions have had to find the really good treatments that we need to treat it effectively.’’
She has a wishlist of drugs that aren’t funded here but are in Australia. There, ovarian patients are also able to be part of clinical trials.
“New Zealand women with ovarian cancer are 20 years behind Australia in the treatments that they’re receiving, because of the combination of the drugs we don’t fund and the drugs that are being studied that we can’t access.’’
Long-term goals
When she found out she had aggressive ovarian cancer, Lannon says, “I didn’t know that I couldn’t be cured – that ovarian cancer was something I had to live with. I was naive to what I was facing.”
Her oncologist told her the tumour was too big, so she needed three rounds of chemotherapy, then debulking surgery (surgery to remove cancerous tissue in the pelvis) and aorta lymph nodes removed.
The mother of three adult sons discovered her type is genetic: she carries the BRCA 1 gene, which means she has a high chance of having breast or ovarian cancer.
Although she has a positive outlook, she hit a bump earlier this year when she suffered intense pain. “I thought, ‘I’ve got this cancer at stage 4. Just let it take me and let’s get this over and done with.’ I really didn’t think I could go through with more treatment.
“My oncologist was amazing and assured me that after two rounds of chemo, I would be fine, and with Tramadol in the meantime to treat the pain, I could survive this for a bit longer.”
Home is a block of land where she lives with her husband, Seamus, and one of their sons. Avastin makes her tired and has given her high blood pressure.
She struggles to walk down the driveway. “I manage a little bit of gardening and would like to start going back to pilates.’’
For now, she is on a chemotherapy drug and combining that with bevacizumab (Avastin).
The 56-year-old wants her story to make a difference: a diagnosis like this is a chance to alert and educate others; to turn her trauma into something positive.
If she could turn back time, she wishes her early symptoms were warning signs and not misdiagnosed as indigestion, although her cancer was fast growing. “It has been important for me to set some long-term goals.”
Earlier this year, she set a goal of still being alive at 60 but the latest news has put paid to that. She told the Listener her family and friends were visiting and she hoped to have a party.
No proper screening tests
In Nelson, Dr Kate Gregory is one of three medical oncologists at Te Whatu Ora – Nelson Marlborough (the former Nelson Marlborough DHB). Her speciality is gynaecological, breast and melanoma cancers. She is particularly concerned about late diagnosis and lack of access for ovarian cancer patients to “drugs that we, as an oncology community, feel would have a real impact in terms of people’s survival”.
“It’s distressing for patients because they’re on chat rooms with people in America and England and Australia and they can see people with comparable cancers at comparable stages getting different treatments. It’s also distressing for clinicians.”
Avastin is a standard drug treatment in Australia and the UK. Gregory, who is the co-medical director of the Cancer Society, says: “Avastin blocks [the cancer forming its own blood supply]. Patients who are able to receive that drug do have what we call longer disease intervals – the amount of time before they need another treatment – over and above what you get with chemotherapy alone.
“Australians have access to these drugs and so many more clinical trials. Some of the drugs now being trialled are probably going to become the standard of care in 10-20 years’ time. Sometimes, people can get drugs as part of a clinical trial. But one of the problems in New Zealand is that they’re compared with the standard of care. So, New Zealanders can’t go into the trials because we’re not giving the standard-of-care treatment.’’
Gregory paints a bleak picture about the diagnosis and treatment of ovarian cancer. Money drives the gap between those who can access drugs and those who can’t. She believes about 200 women a year need Avastin, but not all can afford it. “It’s really demoralising for patients and it’s demoralising for doctors as well, when you know that these treatments are out there, and this is not a problem that’s just seen with ovarian cancer.’’
Currently, there is no proper ovarian cancer screening test globally. It is usually confirmed after symptoms are reported via a vaginal ultrasound and a specific cancer antigen 125 (CA 125) blood test, but this can be inaccurate. Most of Gregory’s patients went to their GP first with symptoms, but ovarian cancer was usually not suspected until the cancer had progressed to stage 3. And if women do need gynaecological surgery or radiation oncology, that is concentrated in the main centres – her Nelson patients need to travel to Christchurch, for example.
Pharmac is aware of ovarian cancer drugs that clinicians here would like to prescribe and has earmarked three for future funding. Pharmac’s acting director, pharmaceuticals, Geraldine MacGibbon, says it has to consider applications for drug funding within a fixed budget. Three ovarian cancer drugs – niraparib, Avastin and Caelyx – have been recommended by its clinical advisers. “We empathise with all New Zealanders who are unwell and their whānau who support them, MacGibbon says. “Hearing how medicines impact the lives of New Zealanders is really important in helping us understand what treatments we should be funding.”
Not that lobbying or speaking out necessarily helps speed things up. Avastin has been on the “recommended for funding” list for a decade, says Lucy Elwood, outgoing chief executive of the Cancer Society. Elwood says although it is promising that three drugs are on the list for future funding, a 2021 report for pharmaceutical industry body Medicines New Zealand found it takes an average 7.7 years for Pharmac applications to be approved. Across 20 comparable OECD members, this country’s process is consistently slow. “That report showed New Zealand was twice as slow to publicly fund modern medicines compared with the OECD20 average.”
Excruciating pain
Across the Tasman, former Waitara resident Monica Crean is part of a clinical trial to find a drug that might slow down and control her ovarian cancer. In November, the 41-year-old moved to Perth with husband Brian to be closer to Australian-based family.
The decision has also saved the couple money on cancer drugs unfunded here but free in Australia. Just before Christmas 2021, Crean went to Taranaki Base Hospital with excruciating stomach pain. Working in an office job at the time, she was investigated and quickly diagnosed with stage 4, inoperable ovarian cancer. Last year was a blur, with rounds of chemotherapy in New Plymouth and trips back and forth to a private hospital in Palmerston North for Avastin, for which she had to pay $3300 a pop. The couple spent $20,000 on these drugs, draining KiwiSaver and selling what they could.
“I had to stop working because I couldn’t function. It was the medication I was taking for the side effects of chemotherapy and the pain. I applied for my KiwiSaver fund to be released early. That funded some of it and my husband was pretty much just selling everything off.”
Crean notes that ovarian cancer has a high-profile research campaign in Australia, spearheaded by the siblings behind the Camilla and Marc fashion label. Camilla Freeman-Topper and Marc Freeman were 11 and 13 when they lost their 42-year-old mother, Pam, to ovarian cancer. Their campaign, “Ovaries. Talk About Them” has so far raised A$1.68 million for a clinical research team working on an early detection blood test for the cancer.
Like others, Crean wishes her symptoms had been picked up earlier. A year before, she had been back and forth to her doctor, when her symptoms were dismissed as indigestion or menopause. “I feel like if I was diagnosed a lot earlier, I wouldn’t be at stage 4. In my case, the blood test would have picked my cancer up. Just one blood test. And that never happened.’’
In Australia, her oncologist is involved in a clinical trial and Crean has become part of it. Her tissue is being tested against thousands of different matches to see if there’s compatibility with different drug regimens.
She is now on two drugs: Avastin keeps the cancer at bay, while chemotherapy gives her a bit more time. Both are free of cost but not impact. “I call it bad chemo, because it makes you feel horrible.’’
The cancer has spread from her ovaries to her liver, spleen, spine and lungs. “There is no cure, but I’m hopeful they may find a drug that works and will help me live a longer life.”
A diagnostic challenge
‘Ovarian cancer can be challenging to diagnose, with symptoms that can be subtle or non-specific,” says Nicola Hill, acting chief executive of Te Aho o Te Kahu – Cancer Control Agency.
New Zealand is ranked sixth out of seven comparable countries for the five-year survival rate from ovarian cancers, and in the past 20 years, deaths from ovarian cancer here have increased by 46%.
The agency has commissioned a series of articles for doctors and nurses on early detection, referral, follow-up and surveillance for five gynaecological cancers, including ovarian cancer. This will reach 12,000 health professionals.
An agency priority is planning cancer services in the reformed health system. “Improving radiology services – which are critical for early diagnosis of ovarian cancer – is central to this,’’ Hill says.
GPs are backing a public education campaign on symptoms, too, and want to be able to more easily order ultrasounds if a patient has non-specific symptoms.
“Ovarian cancer, while rare, has high mortality because in 80% of cases it causes few symptoms before it has metastasised to other areas of the peritoneum,” says Dr Luke Bradford, medical director of the Royal New Zealand College of GPs.
“Symptoms often mimic more benign bowel conditions. It can be difficult to access imaging from the community for non-specific symptoms and the college would like to see better access to imaging based on clinician judgment.’’
The signs and symptoms of ovarian cancer include:
- Increase in tummy size or bloating
- Abdominal, pelvic or back pain
- Needing to urinate more often or more urgently
- Bowel habit changes
- Eating less and feeling fuller
- Fatigue
- Indigestion
- Painful intercourse
- Abnormal bleeding from the vagina
- Unexplained weight change
