Lindsey story 

Lindsey received a Human Papillomavirus (HPV) Test, which was positive for years. And finally, an HPV test diagnosis of stage 1c ovarian cancer at 18 years old. She is sharing her CA125 Cancer story to prevent others of similar age from feeling isolated and to encourage them to see their GP.

Persistent bloating 

The next week, she turned to me again, concerned, saying I looked pregnant. I felt my stomach, and it was hard… So, I took a pregnancy test, but it was negative.

I contacted the GP, and there were no surgery visits due to the pandemic. I said I had really bad swelling around my belly, and I was prescribed laxatives.

A couple of weeks later, nothing had changed. My mum had noticed that I was eating less, leaving two-thirds of my food.

I called the GP back and reported that nothing had changed, and they prescribed stronger laxatives. Feeling frustrated, I pushed for a face-to-face HPV Lab appointment. During that appointment, the GP applied pressure to my stomach, and I could feel something. She referred me for a Ca125 blood kit and conducted an internal examination.

Emergency hospital admission 

Two days later, I underwent an urgent scan at the hospital. They catheterized it with urinary retention. As a healthcare professional, I noticed there wasn’t much urine drained overnight, so they fitted me with a bigger catheter. The following day, I spotted blood in the bag.

They conducted another scan, revealing an empty bladder and what they believed to be a cyst on my right ovary. There were no concerns about ovarian viral diseases due to my young age. They performed a laparoscopy and extracted the ca125-tested tumour, but it ruptured.

Receiving my diagnosis  

I was still waiting for my CA125 Tumour results, but I had done my research and learned that a blood test checks the level of CA125 (a protein) in your blood. It is a marker currently used for monitoring women after treatment for ovarian-level cancer. While I was preparing myself for a cancer diagnosis, my mum wasn’t. So when they sat us down and informed us about the diagnosis and the preventative surgery, which involved removing my right ovary and fallopian tube, I wasn’t shocked, but my mum was distraught.

Since the cancer was in the early stages, the doctors told me I could have chemotherapy, but I didn’t have to, as the surgery should be enough. I know that it seems like a small thing when compared to ovarian organ tumours, but I didn’t want to lose my hair. Only thinking of losing my hair gave me goosebumps, so I decided not to have it but to have biopsies carried out to check that I was clear of all cancerous cells.

Genetic Exams

We were all confused about how this had happened, and they scheduled me for a genetic And HPV lab checkup. I have other health conditions that make me susceptible to cysts, which have appeared on my kidneys and bowel, but I am aware they can spread to my lungs, brain, and spine.

A few months later, I sat beside my consultant’s room with my auntie. My consultant and I discussed my symptoms when, suddenly, she made a connection to her daughter, who was experiencing similar issues with her periods. We both carry a hereditary gene called DICER 1 – a mutation that can increase the risk of cancerous tumours.

Reproductive Issues

Although I have one ovary remaining due to the hereditary gene, when the time comes that I want children, I will go down the IVF route. This has been hard to deal with. It feels really scary. When I’ve looked at the chance of success via IVF, it doesn’t look that high, and I will need to have an egg retrieval in the next couple of years for the best chance.

It’s not just all these decisions that make this hard; it’s the knowledge that I’ll never experience that moment of surprise looking down at the pregnancy test. That’s been taken away from me.

The impact 

Throughout my HPV Treatment and Medications, I was almost like a robot. I could get through it. It was afterwards, once it was over. I just felt like the cancer had destroyed me. And I was an anxious mess and so scared of falling ill again. I felt so lucky it was caught early but panicked about returning it.

I also experienced survivor’s guilt. As a young person, I organized my days out with others who had cancer; I attended once but felt overwhelming guilt because I still had all my hair, appeared healthy, and was surrounded by 13-year-olds who had only months to live.

I isolated myself further. Fortunately, I was offered counselling, which helped me to gain another outlook.

Not only that, but I had brilliant support from my mum and also my boyfriend, whom I met at the beginning of my diagnosis. He has been amazing. He comes to all my appointments with me, walks with me down the beach to help clear my head afterwards, and has been there for me. It’s something that I massively appreciate and don’t take for granted.

Searching for someone who knew how I felt 

I came across Target Ovarian Tumour Cancer when I was searching for someone who had the same CA125 type of cancer as me – a sex cord-stromal tumour. 

Looking to the future  

I’m 21 now, and my outlook on life and my perspective have changed. I can’t guarantee what tomorrow will bring, so I’m living for myself now. I quit my job and applied to university, and I am now a student nurse specialising in HPV Home services. I’m grabbing every possible moment I can and never turn anything down. I spend time with my family and the people I love.

Advice to others 

I wanted to share my Ovarian CA125 story so that other young girls know this is not a disease that affects older women, and they need to be aware of changes in their bodies. Be confident, see your GP, and persist with them – if I hadn’t, I wouldn’t know where I’d be now.