“I was 25 when I was diagnosed with a rare type of ovarian cancer. I had no family history and the symptoms I was experiencing were overlooked because of my age.
I was on my way to a doctor’s appointment – my tenth visit in 14 months – and I knew this time it was going to be different. I had been experiencing stomach cramps, acid reflux, which often got so bad I felt like I had swallowed bleach, and regular stomach bloating. I was told they were classic IBS symptoms and given medication, but nothing worked.
By now my stomach was swollen, solid and domed shaped. My GP referred me to have an ultra sound and when the date of my scan arrived I was so nervous. I knew something was wrong; my stomach was so swollen I looked about four months pregnant.
After the scan I was told to go to A&E as they could see a very large mass but couldn’t tell where it was attached too. My mum took me straight to A&E and I had further tests, including a CA125 blood test, which came back normal. However it was confirmed that I had a large ovarian tumour and would need to be operated on soon.
At 24 my main concern was that I was going to lose my right ovary. I was beyond distraught as I was told this was more than likely going to happen. My consultant was amazing. He talked me through my procedure and answered all my questions. I completely trusted him, which made a hard situation easier.
My operation went well. The tumour was 15cm by 10cm and 3.5 litres of fluid were drained. On removal there hadn’t been any spillage of the fluid. My right ovary was removed as it had been squashed by the tumour.
After a few days I was allowed home and less than a week later I received a letter saying I needed to come in that week. My consultant told me I had a borderline mucinous tumour and that the type I had was very rare so I would be referred to the Queen Charlotte and Chelsea Hospital oncology team.
I felt totally numb. I couldn’t believe this was happening to me. I had just turned 25 and it didn’t seem real. I don’t have any family history of ovarian cancer. My consultant told me I had the classic signs but because of my age it was overlooked.
I met my oncology team and was introduced to my Macmillan nurse. I was so emotional I don’t remember much of what got said, except that I needed to have more surgery and a few other procedures. The distraught look on my mum’s face still upsets me to think about.
I was told my tumour was rare but that people who have it are usually in their 20s. Not much is known about this type of ovarian cancer so they make sure no stone is left un-turned, which was reassuring. I had a colonoscopy procedure and CT scans before my next operation. The colonoscopy came back clear, but the CT scan showed raised lymph nodes, which was of concern. The next step was further surgery.
This time I had my appendix, omentum and a small piece of my bowel removed, and a full stomach wash to check for any cancerous cells. The next few weeks were an emotional rollercoaster while I waited to find out if I would need further surgery.
Back at the hospital I felt like I was waiting forever. When I was finally called in the news was good – everything had come back clear and there wasn’t a spillage of the cells from the tumour. I was told I would need a check up every 6 months and that once I've had children it would be best to have my other ovary taken out."
If you would like to share your story or become an ovarian cancer voice, please contact Ross@ovarian.org.uk