Amy Van wyk’s journey
My husband and I started trying for a baby soon after we married in 2014. We discovered we couldn’t fall pregnant and went for fertility tests. I had also started to experience terrible abdominal and back pain. I was put on tablets and bounced back and forth to GPs unable to get an answer. It was an awful time and I felt permanently exhausted. I couldn’t get through the day without having to sleep in the afternoon.
In 2018 we moved to a new house and I signed up to a new GP practice where I was finally taken seriously. There I was given a CA125 blood test which checks for raised levels of a protein called CA125. The test showed that the proteins in my blood were over 1000. They should be less than 35. I also discovered that I had fluid building up in my tummy.
I was urgently referred to The Royal Marsden and after further tests I finally received the diagnosis that I had stage 3 low grade serous ovarian cancer, a rare form of ovarian cancer. At my oncology referral I asked about preserving my fertility and I was told it was now a matter of ‘life or death’.
When I got my diagnosis my first thought was, at last I can get some help now. The Royal Marsden is so special. I felt listened to and the team took me seriously. I knew I was in safe hands and that they were going to help me
I was told I needed major surgery to remove my ovaries, fallopian tube and drain the fluid on my abdomen which had been causing me such a lot of pain and discomfort. The way the consultant explained the operation was so gentle and comforting. I felt like a person and not just a patient. But the surgery also meant that our dreams of having children would be taken away. At that point it was about surviving but we were also having to deal with infertility. Everything had changed and that took a lot of adjusting.
My surgery took place in September 2018. They discovered the disease was widespread and were unable to remove it all. As a result, I needed chemotherapy quickly and started five weeks later. I had two types of chemotherapy once every three weeks for six sessions. At the fifth session they added Avastin, a maintenance treatment which I completed in February 2020 which felt incredibly emotional. I have also been provided with additional support such as acupuncture which I still have today, and it has massively helped me with menopause, pains and hot flushes which began as a result of the surgery.
All the way through my treatment I have found ways to keep motivated. I have always loved running and six months after my surgery, using the couch to 5k app, I slowly built my fitness back up and felt motivated to keep running as much as possible. You will regularly find me on a run or long walk with our dog around Epsom Common near where we live. I have also been working on a master’s in history with a 15,000-word dissertation keeping me busy, especially throughout lockdown.
In June 2020 I received the wonderful news that my scan results were stable and my CA125 is also stable. I will continue being monitored because I have a residual disease and I know it could grow over time. For me, research is my best hope. Hope of more treatment options, and to give more women like me the chance of a longer and healthier life.