Amy, a woman who shared her story with Target Ovarian Cancer

Amy's story

It’s been four years since Amy shared her story with us, and despite 2023 being challenging, she wanted to share how she has continued to hold onto hope.

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 want to see more change in the awareness of ovarian cancer. There needs to be more.

There should be information in surgeries and hospitals, in changing rooms and all over social media. Women should be asked by their GPs at their check ups about their overall health. GPs should be more informed about the signs and symptoms of ovarian cancer and know that it does affect women under the age of 50.

I was 36 when I was diagnosed and it took me over two years to be diagnosed even though I was under the care of a gynaecologist and being investigated for fertility issues. 

There needs to be more research into rarer forms of ovarian cancer - and more treatment options rather than a 'one size fits all' approach. All this needs to be looked at so women have better access to treatments.

The long wait for the right diagnosis

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.

Cancer was the last thing I expected

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.

2024

I don’t let cancer shape my life; I shape my life around cancer. So when all the restrictions lifted after lockdown, my husband and I started to travel. We were excited to visit South Africa and we had a dream holiday planned. 

The seizure that led me back to hospital  

It wasn’t the holiday we'd planned for. In fact, I had a seizure where my heart had stopped. 

The restaurant manager and my husband had performed CPR and a doctor came from the beach in her flip flops to help. They saved my life. 

I was taken by ambulance to a hospital near Cape Town where the scan revealed multiple that my ovarian cancer had now metastasised to my brain and resulted in multiple brain tumours. It was an extremely scary time and I just wanted to fly home. After three cyber knife treatments last year, my cancer is currently stable and I am monitored by scans every three months.  

Taking control

When I was diagnosed with ovarian cancer, 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 and I love being part of a community that celebrates everyone whatever stage of fitness and ability that they are at. 

Hoping for a better future – and never letting go of that hope

I believe strongly in holding on to hope. Hope is what has kept me going. My family and friends have been such a source of support and strength as I would not have been able to get through the past few years without them.

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've been 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.  

For me, it’s important to let other women know that although it 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. 


If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: [email protected]. We're open from 9am until 5pm, Monday to Friday.

If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity