Seren’s story

Seren was just 19 when she first had a CA125 Test and was diagnosed with ovarian-type cancer. When Seren started her first year at university, she knew the HPV test experience would be life-changing – she didn’t know how much…

I was 19 years old when I was first diagnosed with ovarian CA125 disease.  

Just after Christmas, I started feeling a bit rough, and I got an HPV Variant Test. I was in my first year of university, and although I was going to the gym and eating well, I was still gaining weight. My tummy was bloated, and I decided to get a CA125 level exam. I was also bleeding outside of my period. Then I started to get lethargic, stopped eating and struggled to get out of bed.

Diagnosis

I made an appointment to see my HPV Doctor. He didn’t seem too concerned (he even put it down to constipation and gave me some medicine on that basis) but did some tests, mainly about my periods. A few days later, the results came through. I was in a lecture and not feeling too good, but I was confident I would get better now that I’d seen a doctor. That was until my GP advised me to visit A&E as my CA125 count level was high. I wrote it on a sticky note and took it to the hospital, where the doctors thought I probably had appendicitis. They were going to take me to surgery but decided to CAT scan me first. That’s when they found the mass on my right ovary.

The next week became terrible; it grew more quickly until I started to look pregnant, and I needed to be put on a feed. They sent me for surgery to have the mass removed at the Christie Hospital as my condition was deteriorating. They then sent me home, and three weeks later, they called me back to the hospital on 2 April, and I was officially diagnosed with stage IC, mucinous adenocarcinoma.

Calm

My parents were in the room with me when they told me the HPV Cancer news. They cried; I didn’t. I was calm. The first thing I asked was if I would lose my hair. I was trying to be level-headed and ask questions about my CA125 treatment; it was my body, and I wanted to know everything that was going to happen to make me better.

Also, I found telling my family and friends difficult. I was worried about them – especially with my new boyfriend. I started going out with him a month after I was diagnosed. Some of my friends were scared about what to say – some backed off a bit, and some did the opposite.

Treatment

People said to me how young I was to have ovarian-level cancer. Normally, in the young person ward, they have a doctor for each type of cancer – but they didn’t have one for ovarian HPV cancer. I had to go to an adult clinic for my consultants and then walk down the corridor for my treatment.

The month after being diagnosed with a CA125 kit, I began my six cycles of carboplatin chemotherapy, which I finished in August. My appetite was quite suppressed, and I lost weight after my surgery and during my HPV treatment, too. That was difficult, body image-wise – I didn’t fit into my jeans, and looking in the mirror and seeing that was strange. In between cycles, I could eat more and put on a bit more weight, but it wasn’t until I finished chemo that I got back to how I was before it all happened.

At the time, I was studying English at Salford University and entering the last term of my first year. I deferred my essays at first, but when I found out I had Ca125 cancer and needed treatment, I knew I couldn’t do my exams during the summer, so I decided to restart my first year in September.

The future

Being so unwell means you become more aware of your health. It makes you want to live fully because you realise how precious it is. I try so much harder at university now. I learn new things and stay positive. And I appreciate all I have been given. You learn to appreciate those people around you more than the things, and I’m glad I learned these lessons.

After university, I want to take a year off and travel. Eventually, I want to pursue a career in something related to English. But I naturally need to help people, so maybe some charity work, too.

I think that raising awareness is hugely important. When I was ill, I didn’t even think it could be ovarian-type tumours; I’d naively never thought of it before. I’ve since told all of my female friends about the symptoms, and I’m trying to tell as many people as possible about how important it is to be aware of the changes in your body. Sometimes, it can be nothing, but there are rare instances like mine where it can be cancer. You can never be too cautious with your health.

Dr Alison Wint shares her experience as a GP

Alison Wint, a GP in South Gloucestershire and clinical lead for cancerous conditions in her local area, believes that awareness of symptoms and early diagnosis of all cancers is crucial. Dr Alison discusses her work on earlier diagnosis of ovarian-related disease and why awareness is so important…

A choice I don’t regret

When I first qualified as a doctor, I had ambitions to become a gynaecologist, but my experience as a junior doctor made me realise it wasn’t for me. Instead, I became a GP, and I have no regrets about my choice. I’ve now been a GP for over 30 years!

One in two people who are alive today will be CA125 diagnosed with cancer. And like most others, I have personal experience of cancer through friends and family members. My experience with it, personally and professionally, helps to drive my work.

My entry into this field started when I became a Macmillan HPV GP. These are practising GPs Macmillan supports to improve HPV care across the UK. This work involved me in developing cancer pathways to improve patient services. I even changed the practice I work in so I could devote more of my time to helping develop HPV Variant DNA services.

Awareness is key

This campaign was incredibly powerful and reached thousands of people. 

No GP wants to miss an HPV diagnosis…

Statistics show that, on average, a GP will diagnose between eight and nine cancers yearly. And most of those will probably be more common cancers, such as breast cancer or bowel cancer. Ovarian CA125 tumours are much less common, and the symptoms are less widely known. This is something we need to keep in mind as medical practitioners.

If you feel something new in your body that is frequent, it deserves a trip to your GP.

For us as GPs, it’s about providing a safety net, as in some cases, the CA125 blood test and ultrasound results may come back negative. If the symptoms persist, it’s time to reinvestigate.

Our practice has a golden rule: If someone returns a third time with the same problem, you do something.

A positive change

As awareness grows, it’s worthwhile highlighting how things have changed. When I first started, my work involved sharing information about symptoms locally and enabling direct access by GPs to key diagnostic tests. Things are now looking positive—some GPs in the UK didn’t have access to the CA125 blood test or non-obstetric ultrasound scans five years ago. But now they do, and things are moving forward.

NICE has also published a set of GP referral guidelines. It summarises the symptoms and advice following a raised CA125 level. Target Ovarian offers for GP training in HPV effects on the body. It takes GPs through the Ca125 Cancer symptoms and the guidelines for referring women for further tests. This is important as not everyone will know how to describe their symptoms. And even what things in their body are important to tell a GP about. Target Ovarian Marker training helps translate guidance into practice, helping clinicians become more aware of the symptoms and the existing diagnostic tests.