Fiona: “I’m proud of who I’ve become since my diagnosis, but I wish I had undergone a different treatment”

Fiona was diagnosed with a rare type of ovarian cancer in 2007, aged 25. Now, celebrating 15 years since her diagnosis, Fiona reflects on her journey so far and shares her experiences to highlight the reality of living with ovarian cancer.

"I remember experiencing so many symptoms, but it took a long time to get a diagnosis. I had stomach cramps, bloating and acid reflux - which often got so bad I felt like I had swallowed bleach.

After around 14 months of reporting my symptoms, they discovered that I had a large ovarian tumour which was 15cm by 10cm.

I was beyond distraught and felt totally numb. I couldn’t believe this was happening to me, especially at just 25 years old. They told me I had the classic signs of ovarian cancer, but because of my age it was overlooked and that’s why I wasn’t diagnosed sooner.

I had an initial surgery to remove the tumour and also my right ovary as it had been squashed by it. I was told that, once I've had children, it would be best to have my other ovary taken out.

I underwent more surgery after this too - my appendix, omentum and a small piece of my bowel were removed due to concerns about some raised lymph nodes.

Looking back, I wish I had pushed harder and asked more questions about the treatment available to me and what to expect afterwards - it wouldn’t have changed my diagnosis but I would have had far less invasive treatment.

Although the surgery was successful and I was given the all-clear, I experienced lots of side-effects and complications of the treatment. Things have been very hard at times - in 12 months, I went to the doctor 14 times.

Having an ovary removed has caused hormonal imbalances which affects my mood, weight, sleep and more. I didn’t know this would happen with having only one ovary, but I wish I had.

Due to the major hormonal disruptions I’ve been through at a young age, in 2020 I was diagnosed with a rare eye condition. Never in a million years did I think that what I’ve been through would also affect my eyesight. I have regular treatment to stop me from losing my vision in my left eye. To make things even worse, due to my unstable eye condition and a medication interaction, I am unable to have my eggs frozen - which is something I had really wanted to do so that I would be able to have children. 

I also live in fear that the cancer will come back. I had a scare a few years ago - I experienced severe and sudden abdominal pain and they found pre-cancerous polyps. My anxiety was through the roof and I had to take prescribed medication to keep myself together. There is a history of cancer in my family, so I’m also at high risk of breast cancer. 

It’s very challenging emotionally to deal with this constant worry and I’m currently under high-risk surveillance.

Looking ahead to the future

When I reflect on what I’ve been through, it’s easy to feel hard done by or sad. Life after a cancer diagnosis is full of plot twists, but I try to take it one day at a time and appreciate the good around me.

Despite my struggles, I feel so lucky to live a reasonably normal life - I have become the first oncology skincare specialist in a UK hospital setting. I wouldn’t have achieved this without my diagnosis of ovarian cancer, because it gave me the ability to use my lived experience to pursue a career in supporting other people with different types of cancer.

This Ovarian Cancer Awareness Month, I’m taking part in Walk in Her Name to fund breakthroughs in research for women with ovarian cancer. I’m walking 100km throughout the month because I want to help make sure women have access to the new treatments that work for them - so they don’t have to go through what I did.

I’ve also used my lived experience to help shape ovarian cancer research, as a member of the Ovarian Cancer Action Research Network. I was involved in a first-of-its-kind study which looked at loyalty card data to try to spot ovarian cancer symptoms sooner.

I’ve also campaigned with the All Party Parliamentary Group (APPG) on Ovarian Cancer which campaigns to raise awareness of the disease and improve survival rates.

I’m proud of who I’ve become after my diagnosis, turning an awful situation into good and trying to make a difference to other women like myself.”

With your support, we can develop ground-breaking new treatments, be on the path to a screening programme and build better care pathways to give patients more options to get rid of their cancer or keep it under control for as long as possible.

In Fiona’s Name, can you help us to transform the lives of women with ovarian cancer?