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What It's Like To Have Ovarian Cancer In Your 20s

Seren was about to embark on her second term at Salford University when she realised something was wrong. As a hard partying student, she put it down to the fact she’d been going out too much and was probably run down. Having always been health-conscious, Seren improved her diet and hit the gym, determined to make herself feel better and nip whatever this was in the bud. But it didn’t seem to help, “I was putting on weight and constantly bloated,” she says when we speak on the phone. “I’d also been almost consistently on my period for three months, which was really strange.”
Two months later, with little sign of improvement, Seren went to see her doctor at home in north Wales, and after convincing him that her discomfort was not being caused by a food intolerance, he took a blood test. She was back at university when he called to tell her to go to A&E immediately and that her CA125 levels were really high. “I didn’t have a clue what that meant but I just wrote it down and went to hospital. When I handed the post-it note to the nurse she looked really scared. I didn’t know what was going on.” Seren was kept in hospital for three weeks. By the time she was discharged she had been diagnosed with ovarian cancer and had had major surgery to remove her left fallopian tube and an ovary.
Ovarian cancer is often referred to as the "silent killer" but this is an unhelpful and inaccurate term. It’s not that symptoms cannot be spotted until the cancer is in the later stages, it’s just that they’re difficult to accurately identify and for young women, diagnosis is often even harder to come by. A woman’s risk of developing ovarian cancer increases with age and in the UK more than half of cases diagnosed are in women aged over 65. Only around 1,000 women under 50 are diagnosed each year, and this falls to just 220 for women aged under 30.

There’s no screening for ovarian cancer and, according to GP Dr. Vicki Barber, there are four main symptoms of ovarian cancer: persistent bloating, difficulty eating or feeling full during meals, needing to pee all the time or increasingly urgently, and abdominal or pelvic pain. She explains that, because ovarian cancer in young women is not common, for women like Seren, it might not cross their minds that these problems could be caused by cancer. According to the charity Target Ovarian Cancer, just 3% of British women say they would be very confident identifying a symptom of the disease and almost a third of women end up being diagnosed only after they visit A&E.
Lisa was 21 and studying in Hawaii when she was first diagnosed. Although she had been losing weight for about six months, she put it down to her active lifestyle, and it wasn’t until she was having sex with her boyfriend that she realised something was very wrong. “It literally felt like someone had kicked me in the cervix and about four days later I was still in a lot of pain so I went to see a specialist. She barely touched my stomach before she told me something was growing inside of me – she said it was about the size of a small watermelon.” After being referred to a gynaecologist on the island, Lisa was booked in for surgery to remove the growth, which had tripled in size in just three weeks.

Both Lisa and Seren were told they had ovarian cancer after their surgeries as it had not been possible to confirm what their tumours were before that. “I had a week’s wait after my operation before my test results came back,” says Seren. “It was the longest week of my life.” She went on to have chemotherapy and made the decision to defer her first year of university the same month she began the treatment. “The first few sessions were OK, I was actually surprised by how well I felt. They put me on these steroids and I was just bouncing around, but then the last three sessions hit me really hard.”

For Lisa, her first operation was just the beginning. During the surgery her cyst burst and four months later, her cancer returned. While she had recovered remarkably quickly from the first operation – “I was running and surfing three weeks later” – the second one hit her much harder, emotionally and physically. "Having two intense operations, four months apart, was so hard on my body and I was pretty naïve about that going into the second one.” Lisa’s recovery took months – walking even short differences left her exhausted and her physical incapacity was particularly frustrating compared to the active life she led before.

One of the main difficulties facing young women who have been diagnosed with ovarian cancer is how badly the treatment – be that surgery or chemotherapy, or both – can impact their fertility. “We do our best to discuss the long term effects with women and work through the emotion that evokes,” says Vickie Gadd, a gynaecological-oncology clinical nurse specialist working at Maidstone Hospital. “The vast majority of women, regardless of their age, just want to do whatever they need to do to save their life – they’re in survival mode. It’s only after they’ve gone through that initial treatment that reality hits home and they have to come to terms with the impact.”
Seren will start fertility treatment to freeze her eggs in a couple of months “to be on the safe side”, but points out that discussing these things at such a young age is not always comfortable. “I’ve only been with my boyfriend for a year and a half, and it’s obviously a bit strange because your partner is asked to come to the consultations too. We’re both only 20, and we don’t really want to be talking about it yet, but I guess you have to. He’s been really supportive and great about it though.”

For Lisa, her diagnosis and subsequent operations have had a significant effect not only on her ability to establish meaningful relationships but also on the choices she’s made over the last five years. “A lot of who I am is a result of having cancer. After I was diagnosed the second time I knew that I might not have my own children, so instead I’ve been really focused on my career. I got my Masters degree and my job, and I've just made my life as full as I can in other ways.”

The rarity of young women with ovarian cancer, combined with the difficulty in correctly identifying the symptoms, means that it’s especially hard to diagnose. Vickie acknowledges this problem, especially in the younger generation, and says that the focus should be on empowering women to have the confidence to question what’s happening with their bodies. “We want people to be able to go to their GP when they notice symptoms and say ‘This doesn’t feel right, I want a scan’.”

Dr. Jonathan Krell, a consultant medical oncologist at Hammersmith Hospital, also says that while young women should not be overly concerned about ovarian cancer, people should be aware of their bodies and of their family history of ovarian cancers. “Catching this disease early is key to giving them a better chance of cure.” Seren agrees. “If I hadn’t had gone to the doctors when I did, God knows what would have happened. I was really conscious of my health so I noticed it straight away but a lot of women don’t do that and then it’s too late. You’ve got to be aware and don’t be scared to go to the doctors – it’s not going to do any harm but it may save your life.”
For more information, read Target Ovarian Cancer’s guide for young women here.