Despite presenting to medical professionals with a number of ovarian cancer symptoms, Amy waited many months for a diagnosis. Here she talks about her struggle for answers, the power of positivity and why – ultimately – it was hope that helped her through…
I think it’s the missed opportunities that hurt the most. For me, an earlier diagnosis could have saved me months and months of pain and confusion. Now my life has changed so much since my diagnosis – but I don’t let cancer shape my life; I shape my life around cancer.
I was poorly for a long time before my diagnosis. I first went to my GP because my husband and I were trying for children. I was having trouble falling pregnant and my doctor referred me for fertility tests. At the time, I was weeing a lot and having very painful periods. A scan revealed an ovulation cyst and I was referred to a urologist for bladder symptoms. By the following year I was becoming increasingly tired and I started to lose weight. I’d been born with a heart condition, so I started to think perhaps my symptoms were related to that. I see a cardiologist every year and I decided to mention my problems to them. It was suggested my symptoms could be stress related because I was studying at the time.
As time went on, I was feeling more and more unwell. My weight loss continued to accelerate, I was having migraines constantly and I seemed to need the toilet permanently. I just never really felt well anymore. I was so fatigued that I was taking naps in the middle of the afternoon. All I wanted to do was sleep.
The pain was unbearable. Upset and confused, I went back to my GP. This time I was given a pregnancy test and put on antibiotics for a bladder infection.
After moving house, I registered with a new GP practice and mentioned the symptoms I had been experiencing for two years. Finally, I was referred for a CA125 test, which came back with a reading over 1,000. I was immediately referred for emergency tests.
Eventually I was transferred to the Royal Marsden and underwent major surgery. At this point the cancer had spread so they couldn’t do a full hysterectomy straight away. Instead, I started on chemo and later began taking bevacizumab (Avastin®) every three weeks.
Initially my emotions were all over the place. I remember feeling very lost and confused. I just kept thinking ‘How have I found myself here?’ I was 36, my husband and I had only recently gotten married and we were supposed to be trying for children. Cancer was the last thing I’d expected to happen to me and there was obviously some anxiety about what the future held.
It was so important to me to focus on what I could do, rather than what I couldn’t. That’s why – ten weeks post-surgery – I started powerwalking. I also restarted my MA in History, which had been put on hold while I was undergoing treatment. Now, a year on, I’m busy doing park runs and going to the gym regularly. Being active helps take my mind off things and gives me such a huge sense of achievement.
Education and awareness among medical professionals are key – I saw various consultants and GPs but my symptoms were not attributed to ovarian cancer. Sometimes it can be awkward talking about gynaecological issues. I know that when I was experiencing bladder and bowel related symptoms, I didn’t want to discuss it with friends because it felt embarrassing. But the more we talk about it, the more people will know. I was so fortunate to have such great support from friends and family. They were amazing for both practical and emotional support. Without them I would have struggled far more.
I also want to raise awareness of low grade serous ovarian cancer, which is the type I was diagnosed with. This is a less common type of ovarian cancer which is treated the same as high grade serous even though they are different types. Research into this disease type is underfunded but Target Ovarian Cancer have recently announced funding for a project developing new, more effective and targeted treatments for low grade ovarian cancer.
For me, it’s important to let other women know that although this disease can feel overwhelming, you shouldn’t stop celebrating the little things. Do something you enjoy every day – whatever that might be. I made sure I walked outside every day which lifted my emotions. Lastly, I just want to tell other women not to lose hope. Try and hold on to hope if you can – it’s what got me through in the end.