Now is the time to act.
Every day a New Zealander sits in a doctor’s office and receives the devastating news “you have ovarian cancer”. Five years ago, that person was me.
I had spent the preceding two years going back and forth to my GP, and many other doctors, searching for answers for my persistent health problems, each time being told it was “nothing serious” and did not merit further investigation.
But one shocking day I went from “hypochondriac” to having emergency surgery and waking up to the diagnosis of ovarian cancer, a disease I’d never even heard of.
At 32 years old I thought I had my whole life ahead of me. Then my oncologist said that “life” would likely amount to five to fifteen years – more time than many women with ovarian cancer get – but not enough.
If my cancer had been in my breasts, rather than my ovaries, that’s probably where this story would have ended because my cancer had only just spread. Too small to see with the naked eye – early, but not early enough for a cancer with little research and the best available treatment developed about the time I was born.
It is a travesty – ovarian cancer is over- looked, ignored, often wrongly diagnosed or diagnosed too late, and research needed to find effective treatments is severely underfunded.
For all the silence, you’d think it was rare but ovarian cancer is the fifth most common cause of cancer deaths in women. In the five years since I was diagnosed I have learned that that my story is not unique. This cancer that cuts short lives, hopes, dreams and shatters families, is misdiagnosed more often than not.
For five years, I have managed New Zealand’s only dedicated ovarian cancer charity. I started the charity and work full-time without remuneration, in-spite of my limited life expectancy, because the situation is unbelievably bad.
Here’s what I’ve learnt:
- Ovarian cancer kills more women than all of the other gynaecological cancers combined.
- Women in New Zealand struggle to be diagnosed.
- There are no national guidelines and declined referrals for ultrasounds are all too common.
- 1 in 3 women diagnosed have a rare ovarian cancer (like me) which receive little research. It really puts that into perspective when you realise that the US, who fund half the world’s medical research, spend less on ALL rare ovarian cancers, than NZ spends on its national orchestra.
- New Zealand spends significantly more on preventing road deaths, which kill fewer women, than on ovarian cancer (the last specific NZ
government ovarian cancer research funding was in 2013). In fact, as of this year, New Zealand will spend more on road safety than the entire world will spend on ovarian cancer research.
It’s easy to see why women with ovarian cancer and their families feel they have been forgotten. To be honest, I don’t know what’s
harder – to know that I’m probably going to die of ovarian cancer, or that if we continue to do nothing my story will keep repeating over and over again. A different woman. A different family. A different face. But the same story, as it has been for decades in the past, for decades to come.
It’s taken five years, as a cancer patient with a limited life span, to navigate the system and get to this point. Two surgeries, regular injections and a handful of pills every day currently keep my cancer at bay. I don’t know if I have another five years to do this again so I’m begging you to pay attention when I tell you that deaths from ovarian cancer have come to be expected, but they are not acceptable and certainly not inevitable. The research is clear on that. We can save lives if we act now.
In 2022 we presented a report to the Health Select Committee, the report is the culmination of a year and a half of research and consultation with doctors, nurses, cancer specialists, radiologists, researchers and affected women. It outlines the steps that we, as a country, need to urgently take to end ovarian cancer deaths
There are some easy steps we can take, as soon as tomorrow, which would quickly see results. Other changes will take longer but are no less important.
New Zealand has a proud history of championing women’s rights. It’s time to turn our attention to the significant, yet forgotten women’s cancer. This isn’t someone else’s problem. I urge the government to take a stand to save the lives of women and girls in New Zealand and abroad. As a nation it’s well within our capability.
The only thing we can’t afford to do is nothing.
Founder Cure Our Ovarian Cancer
You can help women like Jane living with ovarian cancer by making a donation to help us fund lifesaving research, raising funds to help us continue our important advocacy work or by volunteering to visit your local MP and share our government submission with them.