Story written by Sophie Guthrie for Stuff.
I’m writing this not as a cancer survivor but as a daughter who has been hit with the reality of this awful disease not once but twice.
Now I feel it’s my duty to spread awareness – and this February is a good start, as it’s Ovarian Cancer Awareness month.
I was just 22 when I lost my precious 56-year-old mother to ovarian cancer. At the age of 29, just three months ago, I lost my mother-in-law to this same disease. She was 64. Both mothers were gone before I hit 30, both mothers gone before they hit retirement.Both their deaths were preventable.
I don’t think I had even heard of ovarian cancer before my mum got diagnosed. Breast cancer – sure. Cervical cancer – sure. But ovarian cancer? What even is that?
Deadly. That’s what it is.
Ovarian cancer is the fifth leading cause of cancer death in New Zealand women. More women die from it than melanoma. The five-year survival rate is 39 per cent; breast cancer survival is 87 percent. Yet the Health Research Council spends so much on breast cancer research and so little on ovarian cancer research.
The proof is in the pudding (or should I say the government funding?). I know the symptoms of breast cancer – I know to check for lumps. I know to get regular smear checks. I know to get regular mole checks. But how do we check for ovarian cancer? What are the symptoms? Unfortunately, now I know. But do you? My mum didn’t. My mother-in-law didn’t.
For my mum, it started with back pain, which she put down to old age or being unfit. Then came the bloated stomach. Irritable Bowel Syndrome (IBS) was the official diagnosis from the doctor – a gluten-free diet was the cure. About 80 percent of women with ovarian cancer are initially misdiagnosed by their doctors.
Months went by, and the symptoms persisted until finally, the doctor recommended a blood test and an ultrasound, revealing our worst fears – stage 3 advanced ovarian cancer.
My mum went on to live 22 more months. She made a bucket list and managed to take a cruise around Israel. We cherished every day. But we also grieved every day. Twenty-two months knowing that death was coming, waiting for it, not sure whether to cry now or after.
Looking back now, my mum was lucky. My mother-in-law only had three months. She was diagnosed with stage 4 advanced ovarian cancer. She didn’t even make it to the doctor. Diarrhea was the only symptom that we know of. She was in the United Kingdom, and we were in New Zealand – so far away. I wish I could have helped. I wish I had known sooner to tell her to see a doctor, and I wish I could have taken her myself. I wish she could have made our wedding. She had booked her flights to New Zealand; she was so excited. She passed just six weeks before we said ‘I do’. My mum passed just six weeks before my sister said ‘I do’.
Funerals, weddings, death, celebration. A rollercoaster life.
For my two mothers, it’s too late for wishing, wishing the government would spend more funding on research, wishing they would spend more on trials, wishing they would spend more on drugs and awareness. Why, in 2020, do I still have to wish? Why is New Zealand still so far behind?
Last year, research showed that over a decade, the survival rate of ovarian cancer in New Zealand had improved less than in Australia and the US. That’s not surprising since Australian women have had access to 139 ovarian cancer clinical trials compared to just 22 in New Zealand. It’s time for change, and it’s time for our government to step up.
There are many advocacy groups out there trying to help make a difference. Cure Our Ovarian Cancer is one of them. This year, my sister-in-law and I are doing a three-day overnight cycling trip to raise funds for them. If you would like to donate, please head to our givealittle page.
And finally – please get educated on the symptoms. If you’re over the age of 50 and your doctor says IBS, insist on a blood test and ultrasound – just in case. Get it on your first appointment – don’t wait 12 months. It could make all the difference.
According to Cure Our Ovarian Cancer, symptoms include bloating/abdominal swelling, eating less and feeling fuller, pain in your abdomen/pelvis/back and needing to pee more often or leaking.
We are grateful to Sophie for sharing her experience with ovarian cancer and for helping us raise awareness. If you would like to share your story too, please get in touch.
OCFNZ started as Cure Our Ovarian Cancer in 2018, with a focus on low-grade serous ovarian cancer. In 2020, we expanded our focus to include all ovarian cancer and, in 2024, we changed our name to the Ovarian Cancer Foundation New Zealand.