Many people diagnosed with a serious or incurable illness dream of exotic locations and once-in-a-lifetime experiences. Jane Ludemann’s bucket list is different.
Widely travelled, she and fiancé (now husband) Joe Macklin had mapped out a future that included marriage, career advancement, more travels and a family. But that was before the emergency surgery in 2017 that solved the riddle behind symptoms that had blighted her health. Ludemann was diagnosed with low-grade serous carcinoma, a rare ovarian cancer that is fatal in many cases.
With a likely prognosis of between five and 15 years to live, she has given up her optometry job in Dunedin to fundraise and campaign to improve survival rates. She is dedicated to alerting New Zealand women to the early symptoms of the disease, which affects about one in a thousand women and for which there is no effective treatment. With the support of Macklin and her parents, Elspeth and Grant, she founded Cure Our Ovarian Cancer, aiming to raise $20 million for research.
She is fighting a widely held belief that this type of ovarian cancer is a symptomless “silent killer”. She knew something was wrong, but numerous doctors dismissed her concerns before the medical emergency that revealed her condition.
Ludemann was raised on a farm in Ōamaru and describes her childhood as “an idyllic, stereotypically New Zealand upbringing with pet lambs and the like.” But both her brothers were born severely disabled and had short lives. Tom died when he was 20 weeks old; Dan died when he was five years old. From the age of eight, she was an only child.
Why do many women mistakenly believe that ovarian cancer is without symptoms?
It is more ignored than silent. I heard on the radio a piece about gender bias in health – the speaker said that at medical schools, they didn’t actually teach that ovarian cancer has symptoms until the 1990s. It was only when a group of women with ovarian cancer were talking and saying, “Oh, yes, I had that, too, before I was diagnosed,” that the symptoms started to be studied. Symptoms can be quite subtle and are sometimes common to a lot of harmless medical conditions, and because there is no education they are less likely to be recognised.
How would you suggest women become informed about the symptoms?
It would be very easy, when women go for their cervical smear, to give them information – just a piece of paper that says, “You’ve just been tested for the No 1 preventable gynaecological cancer but there isn’t a screening test for the others – these are the symptoms of ovarian cancer.” That would be cheap to roll out nationally and women would be informed. The idea comes from Rachel Brown, of Ovarian Cancer Awareness, whose mother died of ovarian cancer, and who has become a fierce advocate for women with the condition. She tried her best to push this with the Ministry of Health but didn’t have much success. I emailed the Health Promotion Agency and someone in the Ministry of Health but didn’t get anywhere. I have a to-do list a mile long and some things just have to go in the too-hard basket.
Why do you think it’s not getting traction?
There’s a little bit of tension on the medical side because there’s no accurate screening test for women without symptoms. But there is a detection test, a CA-125 and transvaginal ultrasound. However, that requires doctors to be listening to what women have to say and thinking about ovarian cancer. Unfortunately, although the cost of an ultrasound is similar to a mammogram, it’s often difficult to get one in a timely fashion through the public system. There is also a shortage of specialists who treat gynaecological cancer. You can’t dumb down the CA-125 test [which detects levels of a protein in the blood that can be elevated in women with ovarian cancer] and ultrasound, and just take a guess at cancer. Just as with symptoms, the results have to be interpreted intelligently.
What happened in your case?
Mine is a relatively slow-developing type. I had had symptoms for a long time but was still diagnosed at stage two. But I probably would have been diagnosed at stage three or four had it not been for the fact that my ovaries twisted and caused so much pain that I got admitted for emergency surgery at Christchurch Hospital. Unfortunately, it’s not that uncommon for women to be diagnosed by way of an emergency department.
If you knew something wasn’t right before you needed emergency surgery, why was it missed?
When doctors keep dismissing your symptoms you feel like a hypochondriac. My GP told me I was too young to have cancer. That is a terrible thing to say to a patient. I think she was negligent, but a lot of other doctors would have done the same.
You were 32 when you were given this news. How do you cope?
I’ve never had any mental-health problems before but I have an awful lot of sympathy for people who do. It’s too much to cope with on your own and it’s really good to have someone impartial to talk to. My oncologist pushed for me to pursue acceptance and commitment (ACT) therapy. It’s really about giving people the tools to think. Cognitive behavioural therapy helps you challenge thoughts that are false, such as, “I’m stupid”, or, “I’m dumb”. ACT therapy is more along the lines of, “I am going to die” – and I probably am. It’s quite an upsetting thought but ACT therapy helps you get some separation so your thoughts don’t overwhelm you.
You’ve set up Cure Our Ovarian Cancer and a website, and you regularly speak to groups that might be able to help fundraise. What’s the value for you and other women of having the group and the website?
It is a really isolating diagnosis. I only know a very small percentage of the women who have my cancer. If you live in a very small area, it is most likely there isn’t anyone else in your community with it. It’s really nice to be able to read other people’s stories – the women have been amazing in sharing their stories. When you are faced with overwhelming odds, knowing an organisation is out there fighting to improve survival gives you hope.
How’s research going into your cancer?
Grants will usually go to a cancer that is more common, which disproportionately disadvantages the rarer cancers. We don’t have figures for New Zealand, but in Australia rare cancers account for 45% of cancer deaths but receive only 13.5% of research funding. It’s not acceptable in this day and age of a billion-dollar cancer-research industry that only 20 research papers were published last year on low-grade serous carcinoma. To improve survival we need research.
You’re doing a lot with whatever time you have left – do you get quiet moments for reading?
I used to read an awful lot for pleasure but you’d be amazed how many novels have a character who has cancer, which is not what I’m after in fiction. I might still read a Lee Child book, but, most memorably, I’ve read Muhammad Yunis’ autobiography, Banker to the Poor: Micro-lending and the Battle Against World Poverty. He won the Nobel Prize after establishing the Grameen Bank (which pioneered micro-financing for women living in poverty in Bangladesh). It made me think. When I was working, I used to give regularly to charities. But before I was diagnosed, I would never have considered donating to a rare cancer, because I believed that if you gave to a more general cancer cause it would help more people. Now I have a rare cancer, I know it’s not that simple.
What’s currently in your reading pile?
In the last few weeks, I’ve read Kate Bowler’s Everything Happens for a Reason: and Other Lies I’ve Loved. She has stage four breast cancer and makes some very acute observations – a difficult read but relatable. And Hyeonseo Lee’s The Girl With Seven Names. I’d read Yeonmi Park’s In Order to Live before; they appealed because they are both stories of resilience. I’m reading David Fajgenbaum’s Chasing My Cure, about a young doctor who developed an incurable rare disease and set out to find better answers. He writes that he’d believed in the Santa Claus theory of civilisation – that there were people working diligently in workshops near and far to solve the world’s problems. But that faith has perverse effects, especially in medicine, because believing that nearly all medical questions are already answered means you just need to find a doctor who knows the answers. And that means there’s no incentive for us to push for progress on these diseases when they affect us or our loved ones. It’s easy to believe someone else is doing it, but the reality is we need to speak up and ask people to support our cancer campaign if we want to change anything. On the difficult days when our goal of $20 million seems overwhelming, I think about the kindness of people who have already given us $100,000, and it gives me a lot of hope that we can solve this problem.
This article was first published in the November 2, 2019 issue of the New Zealand Listener.