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Personal cancer story

Matilda Wagenaar

Even when I was at school, I would get terrible period pains. I would have to take a few days off as I lay in the foetal position with a hot pack held to my stomach, wondering why it was happening to me.

Matilda Wagenaar

After joining the workforce, the pattern continued; every month I would be agony for a few days and need to take time off work.

Over the years I'd seen GPs and had scans done, but had been told it was just polyps. Then, when I was 25, I got a referral to a gynaecologist. He recommended I have a dilation and curettage (D&C), a procedure to scrape away the uterine lining, and said it might help relieve my pain. I was nervous – it was the first time I'd been in hospital since I'd been born – but I was determined to do what I could to ease my monthly agony.

Two days after the surgery I was called in to see the gynaecologist again. And with my partner Mark by my side, I was told I had endometrial cancer.

"It's very strange for someone your age to be diagnosed with this," the gynaecologist said. "It's more often found in post-menopausal or obese women."

I was in shock. I wasn't obese and was only 25. I didn't have heavy or irregular bleeding, which is the most common symptom, and was fine for most of the month. How could it be cancer?

I was in such a daze that I couldn't even think of many questions to ask. I was grateful to have Mark there to take in all the information and ask for more details.

My parents were a pillar of strength when I told them the news, and they helped us through the diagnosis whirlwind. Mum rang the Cancer Council Australia information and support line on 13 11 20 to find local support groups to help us.

I was sent for more tests then saw an oncologist. He said there wasn't much research on endometrial cancer in someone my age, and that even five years earlier they would have treated it with an immediate hysterectomy. But as I was so young and still open to having kids, they wanted to try a different treatment plan.

He recommended I start on hormone tablets, then have another D&C to scrape away the endometrial lining. I would then have a hormonal IUD [intrauterine device] implanted, which would help manage the growth of the lining.

"We're basically trying to control how thick your lining is," the oncologist explained. "We're trying to keep it as thin as possible so the cancer cells have nothing to grow from."

As time passed I had another three D&Cs to keep the lining thin, one every six months. The results kept coming back clear – the treatment was working to keep the cancer at bay.

But eventually Mark and I had a big decision to make: did we want to have kids?

We'd been together for three years and had wanted to get married before having a baby, but my health meant that we could be looking at a smaller window of time to try for a family. There was just no way of knowing if the cancer would return and if I'd need a hysterectomy – and even my specialist told me, "If you were my daughter, I'd tell you to start trying now." After countless conversations we decided to go for it.

Trying to get pregnant came with its own worries. As I needed to have the hormonal IUD removed timing was critical – the doctors weren't sure if or when the cancer would come back if my lining was allowed to grow. Once the IUD was out I was put on medication to help me ovulate.

Amazingly, we fell pregnant straightaway. I felt so blessed – in spite of my terrible morning sickness! – and our baby girl arrived safe and sound nine months later. Mark is from Ireland so we gave our daughter an Irish name: Aoibhinn (pronounced Ayveen), which means "beautiful radiance". We chose it because she was the radiance that shone through our clouds of darkness.

I'm now 27 and back to my six-monthly D&Cs, with the IUD in again. Eventually we'll have to decide if we want to try for another baby or if I should have a hysterectomy, but for now, we're waiting for the results of the next round of tests and just loving life with our little girl.

If you have bad period pain, please know that you don't have to live with it – see a specialist and get it sorted. Don't be afraid of getting a second opinion!

And if you're like me and have endometrial cancer, please share your story with health professionals and Cancer Council Australia. We need as much information and awareness as we can get, so in the future others can have the answers to all the questions we are asking now.

Read more stories about people's personal experiences with cancer