Across Australia, 1,510 women will be diagnosed with ovarian cancer this year and around 1,046 women will die from this devastating disease. A 46% survival rate is not good enough. You can help us change this statistic by donating a daffodil this August.
Anne Moston was diagnosed with ovarian cancer in May 2012. Following chemotherapy, the Dubbo mother-of-four was given the all-clear in October 2012. Just over six years later, in 2018, Anne’s cancer returned. Anne shares her story with us below.
“I have cancer”
“We have a really strong family history of ovarian cancer. My dad’s mum, sister and cousin all passed away from the disease.
In 2012 I started having unresolved bloating, incredible fatigue and sudden onset weakness, like someone pulled the plug and all my energy drained away. I felt like I was always needing to go to the toilet – like I was seven months pregnant – but I wasn’t. One day, I just knew that I needed to go to the GP and get things checked out.
I hustled the GP and she reluctantly sent me for further tests. I got a call from the GP that afternoon, telling me I needed to see her urgently the next morning. She told me I had a 10 x 11 x 12cm cyst on my right ovary. The blood test showed the tumour markers as being slightly elevated. I was referred to the gynaecologist who arranged for surgery in Sydney. Later she told me that it had all the hallmarks of a very ugly cancer.
I had to go home and tell my children and family that I needed surgery in Sydney. It was a really difficult conversation to have, especially as my brother had been diagnosed with multiple myeloma in January that year.
After the surgery, we started celebrating as we were told they were fairly confident they had removed all the tumour and that there was no cancer. However, the day I was flying home to Dubbo I still hadn’t heard from them with confirmation, so I rang to check, just in case. That’s when the surgeon said, “I’m really sorry, it’s cancer, it’s on both sides and you’re going to need chemo.” I was in shock thinking, “I have cancer.”
When I came home to Dubbo I started chemo: six cycles of three weeks each, with two different drugs for 18 weeks. I was a home-schooling, single mum, with four kids between 11 and 18. It was a bit of a crazy ride.
My brother was also going through cancer. Some days we would both be having chemo, but in different towns. We’d talk on the phone and try to figure out life, faith, parenting and cancer. Sometimes we found ways to laugh about the journey, which helped a little. It was one of the most challenging years we’d ever walked through.
In October 2012 I was given the all clear, however my brother sadly passed away in June 2013. Losing him felt like the bottom of my world had been dynamited. It was awful.
When I reached five years since my initial diagnosis, I said: What does that mean now? The statistics for ovarian don’t really tell you anything over five years. It can create a bit of anxiety.
A second diagnosis
Fast forward to 20 June, 2018 – one day I was fine, and literally the next I woke up and couldn’t feel my leg or foot properly. Something just didn’t feel right.
An MRI report showed a tumour in my brain stem. Further tests showed the ovarian cancer had come back and metastasized to the brain and a few other areas.
I had a one-off targeted radiation to treat the brain tumour, and then six months of chemo – usually spending two weeks in Sydney and two weeks in Dubbo. The only downside when back in Dubbo was the struggle to find the practical and emotional/mental support for navigating a much more significant diagnosis.
Around November 2018, most of the numbness had resolved which was a relief. I finished treatment in January 2019. A scan revealed that the chemo didn’t quite get rid of all the cancer cells, but part of the treatment plan was to then go on to a medication called Olaparib or Lynparza. This had just become available on the PBS. It prevents cancer cells from multiplying, so they die off. It has worked, but it’s pretty hard-hitting. There were days where I honestly felt like chemo was easier, I was so sick and fatigued.
In May 2019, the numbness started coming back. I spent two weeks in hospital, while doctors tried to figure out why. Eventually, I was diagnosed with radio necrosis (inflammation as a result of treating the original brain tumour).
Cancer Council’s telephone support group
Cancer Council have been amazing, helping financially with taxi vouchers and some home help, but more importantly with their telephone support service. I am now part of a fortnightly telephone support group with other cancer patients. They are beautiful people and we get to share honestly about our journeys. I look forward to hearing where others are up to, and the different ways that people cope. We can have a laugh, or a cry, or ask the tough questions without fear of reactions. They are an amazing group of patients and coordinators. It has helped a lot.
In September 2019, a scan revealed more brain tumours had begun to grow. These were all treated with targeted radiation. In November 2019, for the first time in a year, all the tumours and inflammation had shrunk by about a millimetre each. We’re all hoping that continues! The plan is that I’ll be able to stay on the Olaparib/Lynparza medication long-term, and also continue with very vigilant screening. Overall, I feel good. I just get tired and my leg doesn’t function like it used to.
It’s amazing how different the capacity to deal with life now looks. I’m very grateful that I am where I am, and for all those who have supported my family and I along this journey”.
A 46% survival rate is not good enough
Ovarian cancer is a relatively rare but devastating disease. Sadly, survival rates for ovarian cancer are still low – only around 46% of those diagnosed with ovarian cancer today will survive for five years or longer after diagnosis.
Ovarian cancer may not cause obvious symptoms in its early stages, which can mean that in many cases, it is present for some time before it is diagnosed. Cancer Council NSW researchers are investigating the impact (benefits, harms and cost effectiveness) of new approaches to ovarian cancer early detection in Australia.
In the last 10 years, we have invested nearly $1.2 million into ovarian cancer research. However, with three women dying from ovarian cancer every day, we need to do more.
Please help us to continue funding world-class cancer research by dedicating a daffodil this August. Together we can save lives.