In conversation: I was diagnosed with ovarian cancer at 19
Seren Hughes was diagnosed with ovarian cancer when she was still at university. For Ovarian Cancer Awareness Month 2020 Seren sat down with Target Ovarian Cancer Nurse Adviser Rachel Mugnai for a full and frank talk about the effect it had on her.
Rachel: Most people can’t imagine being diagnosed with cancer, let alone when you’re still a teenager. What was it like to be told you had ovarian cancer as a young person?
Seren: It felt like doctors (both the GP and then at the hospital) thought it was so many things before they thought it was cancer. Appendicitis, constipation, pregnancy… it was completely dizzying. I’d had the symptoms of ovarian cancer. I know that much now. I had a really swollen tummy, was weeing more often, I really couldn’t eat much, and I had bowel problems. The GP thought it was constipation – but luckily they did send me for a CA125 blood test. I was in a lecture when I got a call telling me the test had come back and I needed to go to A&E, tell them the result and get further treatment.
But it took another month to get a proper diagnosis: ovarian cancer. By this time I was really in need of treatment – it had been dismissed as other conditions for too long. I spent four weeks in hospital, first for surgery to remove one of my ovaries and then extended stay in the ICU.
Because the cancer had spread outside my ovary, I then had chemotherapy for four months.
R: There was a lot of time lost while you were trying to get a diagnosis, which is a common problem in ovarian cancer, and one Target Ovarian Cancer is trying to change. Has your perception of cancer changed since you were diagnosed?
S: Absolutely. I actually work for a charity raising awareness of cancer symptoms in young people – CATTs (Cancer Awareness for Teens & Twenties). I don’t think I’d have ever considered that as a career without my diagnosis. I’ve met so many young people who have had cancer since. One thing I think about a lot now is mental health and cancer. Especially your mental health when you know something is wrong with you and you’re waiting for that diagnosis. I also had problems with anxiety and PTSD after my diagnosis and treatment. I was trying to get my life back, but memories of my experience got in the way. I was triggered by things like smelling hand sanitizer, and found going back into hospital for tests really hard.
R: It’s so important to know where to access support for your mental health after a diagnosis of ovarian cancer. Most hospitals have a psycho-oncology department, which will have people dedicated to helping you cope, but not many people have even heard of the word ‘psycho-oncology’.
S: I struggled for a while before I went to psycho-oncology. I didn’t know how much I needed it. I had therapy for anxiety and PTSD. And I’m not the exception – I think every young person who has had a diagnosis should get access to free, top-quality psychological therapies. I think it’s becoming a focus for a lot of charities, and it should be. Intervention at the correct point is also key, and having a place for young people to go when they feel like they need help. I had to come to that realisation myself.
R: It can be difficult getting back into things as a younger person. You’re just starting out in life, in your studies, your career, your own family. In my previous job looking after women with gynae cancer as a clinical nurse specialist (CNS) I came across very few younger women. There were some with cervical cancer, and only a handful with ovarian cancer. They had different life priorities, and needed completely different things. I remember one had gig tickets and was devastated that she was going to miss it because of treatment. Seeing that band play live was part of her identity, a huge part of how she defined herself. I learned it’s important to have conversations with young people about what their priorities are, and to bring in other charities or organisations that can help.
S: Yes, I had a CLIC Sargent social worker for support pre-dominantly, but I also had a Teenage Cancer Trust key worker. A cancer diagnosis can shake the foundations of your identity, for sure. One of the things I found hardest was the impact on my fertility – with my operation and chemo it had decreased. I made the decision to freeze some of my eggs then, so that I could potentially get pregnant later on. Stepping into a fertility clinic at 19 with a new boyfriend by my side was so difficult, plus I had to wait for special funding to come through to even begin. Then the process itself – injecting myself with hormones and having the procedure to collect the eggs after that – was gruelling. I felt out of place, and a bit alien being there. I didn’t want to be there but knew how important it was for my future to do it. It was so odd because I was the youngest person there by far, yet they treated me the same as everyone else. Looking back I think I needed a little extra support from someone at that point.
R: And that’s just one way in which your experience was different as a young person. If you were to provide one piece of advice to healthcare professionals caring for a younger person with cancer, what would that be?
S: As soon as I’d finished my treatment, I threw myself back into uni. Back into classes, back to my friends, parties, studying. I hadn’t given myself any time to recover – I don’t regret it, but I do wish I’d slowed down just a bit. Young people have different needs than someone who’s more typically at risk of cancer. We are trying to find our place in the world, to get stuck in, work out what we need and what we want from life. To anyone working with a young person who’s going through a cancer diagnosis, if you start from that point of view and build from there, you’ll be helping that young person more than you know.
Ovarian Cancer Awareness Month runs throughout March. There are unacceptable delays in ovarian cancer diagnosis. At the moment, time is lost at every point, and that means one in five women diagnosed with ovarian cancer are already too ill for treatment. Target Ovarian Cancer is calling on UK governments to commit to action. Join the call to demand earlier diagnosis for all women.