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Helen’s Story

A young woman smiling at the camera

“I was young and free and had no reason to even consider this could happen to me” – Helen

Helen, now in her 30s, was only 18 years old when she was diagnosed with a germ cell tumour on her right ovary. She was healthy and had rarely visited a doctor but saw her GP when she experienced severe stomach pain. That visit changed her life.

I am very grateful that the doctor that day decided to send me for an ultrasound, although he was not concerned with my symptoms, which passed by the end of that day. I felt fine, and the pain had gone; however I decided to go and get the ultrasound. 

The pain had been in my mid to upper abdomen. The ultrasound showed nothing abnormal, but when I told them I’d had some slight changes in my periods, they took another look. The sonographer found a 12 cm growth on my ovary, but at this stage, it was unidentifiable. I got referred to a gynaecologist and advised that I likely had a dermoid cyst that needed to be removed surgically, and I would go on a waiting list.

Three weeks after my initial visit to the GP, I received a phone call from Christchurch Women’s Hospital, and they told me to come in immediately. The doctor who had received my case studied my blood test results and diagnosed my tumour as malignant. He told us that day – me and my Mum. We were given a pile of pamphlets about gynaecological cancer.

I would need urgent surgery and chemotherapy once I had recovered. It is impossible to describe the feeling of being told this; it is terrifying, confusing and exhausting. Telling other people was almost worse – it was like reliving the pain and trying to act like I was not terrified and convincing people I was going to be fine.

I had my surgery, and I completed the chemotherapy, and by the time I reached my 19th birthday, I got discharged. 

Physically, I am still in pain at times from the scar tissue from my operation partially blocking my bowel. The lingering mental effects are still here to this very day to remind me that I am human and I am vulnerable. I worry about my health; every little pain or twitch in my body is interpreted as something much more sinister. I worry about my fertility, having only one ovary and because of the chemotherapy. Research data on this is somewhat unclear, and my fertility before diagnosis is unknown, so there is no way to compare the effect.

However, I am one of the lucky ones; there are so many who don’t survive, and we can only change this by sharing our stories and learning more about ovarian cancers that are taking so many of our beautiful women/wāhine.

We are grateful to Helen 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.

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