Jess's Story

23-year-old Jessica (known as Jess), currently training to be a chartered accountant, was diagnosed with a rare form of ovarian cancer called dysgerminoma (germ cell ovarian cancer) in May 2021. Her symptoms were mild for a few months and she had no idea they could be linked to a cancer diagnosis…

Jessica was referred to The Royal Marsden under the care of Dr John Butler and Dr Angela George where she underwent chemotherapy treatment before having a laparotomy – to take out the affected ovary, fallopian tube and lymph nodes. Following her final round of chemotherapy post-surgery, Jessica got the all clear in October and her follow up scans continue to bring good news and show as clear. Jessica has been able to return to work and is looking forward to getting back to living a ‘normal’ life in her 20s.

The first symptom I noticed was tiredness, but I just kept making excuses and attributing symptoms to other things. This was all happening in early 2021 – during lockdowns and I had a new job so I assumed this was just the reason why I was feeling so tired all the time. I’d just taken up a new hobby – playing beach volleyball  - and thought I was feeling extra tired because of this. But then I started to get really dizzy and after playing, I’d go home and get sick. I was sick quite a few times for a few days after, which progressively got worse. Then the sickness started happening at other times, not just after exercise.

 

I was also waking up three or four times in the night to go to the toilet and feeling thirsty all the time. I started to lose weight really quickly, thinking that was due to increasing my exercise and thought the lump that was appearing in my abdomen was just my normal body shape that was becoming more prominent as I lost weight. You always hear things about checking your breasts for lumps but not really anywhere else, so I didn’t even consider that this could be a tumour. Let alone a tumour measuring 17cm across!

 

With the combination of the symptoms of tiredness, sickness, frequently going to the bathroom and a lower belly lump, we thought I might’ve been pregnant. We later found out after discussions with my consultant, that due to the hormones being produced by my tumour, if I had continued to take pregnancy tests, they would have eventually shown up as positive! Not knowing the signs of ovarian cancer, I didn’t at any point think that it was even a possibility for someone at my age.

“Awareness around gynaecological cancers, particularly in young women, is so low – we need to learn the signs to look out for and spread the word.”

 I went to the doctors on 18th May after one particularly bad weekend of being sick and not being able to eat or drink. I went in for blood tests and they referred me to have an ultrasound. The next day I was told by my GP to get to A&E because my kidneys were failing. Whilst they were trying to sort my kidneys out at the hospital, they found the mass in my abdomen and did a biopsy. The results came back a week later and I was diagnosed with ovarian cancer on the 28th May. I was at The Royal Marsden soon after that – it all happened very quickly. I received my diagnosis just ten days after I first visited the GP.

I was told that because I had such a rare form of this ovarian cancer, there would hopefully be an 80-90% chance that it could be treated. I was shocked by my diagnosis but hearing how treatable it would hopefully be, this was very reassuring, and I went into survival mode and focussed on the treatment needed. I think I was initially quite scared that I needed to be referred somewhere like The Royal Marsden, but equally – it was reassuring as I know it’s a specialist cancer hospital so I would be in the best place. John Butler and Angela George are absolute geniuses – they are fantastic and made me feel comfortable and reassured the whole time. I am so grateful to them both for their expert knowledge and I was very quickly able to trust them throughout my care.

I had 3 cycles of chemo then laparotomy surgery in August with John Butler. He took out my affected ovary, a fallopian tube and some lymph nodes. The week after my surgery was probably the toughest week of my life.

After surgery, I had one final round of chemotherapy before all my treatment was complete (five more sessions, taking the grand total to 21 sessions of chemo). My final treatment scan was on the 12th of October which is when I got all clear! My three-month scan which I got recently also came back all clear which is such good news. I’m so pleased and so relieved. It’s so nice to get back into work and start trying to live a normal life again. The last year has been very surreal. I have described it as though we have been in a car crash – the speed at which everything has happened has been a shock and doesn’t quite feel real. Even four months after receiving the all clear it is hard to process what has happened.

Awareness around gynaecological cancers, particularly in young women, is so low – we need to learn the signs to look out for and spread the word. My advice to other people is to listen to your body. If something doesn’t feel right, please get it checked out. There is no harm in getting checked. I would really encourage everyone to get behind charities and funding research into ovarian cancer as the difference they are making is having a life changing effect for people like me. I was able to get the help and care I really needed and the treatment and surgery I had was all very successful to the point that I am now cancer free. I’m so grateful I was able to access the resources I needed at The Royal Marsden.

My advice to other people is to listen to your body. If something doesn’t feel right, please get it checked out. There is no harm in getting checked.

I’m so looking forward to getting my life back on track. Life in your 20s shouldn’t be spent in a hospital bed. I love being active and enjoy swimming, rock climbing and socialising with friends – I can’t wait to start doing more of this again. Recovery is going well, and I have already managed to walk up a mountain in Scotland! I’m so thankful to The Royal Marsden and all the people who treated me. I was treated so quickly and to such an amazing standard that I’m now confident that I can go and live a normal life again.

A huge thank you to Jess for allowing us to share her story AND for organising a sponsored walk for Ovarian Cancer Awareness Month 2022 and raising over £3,000 for the Lady Garden Foundation!