Every month hundreds of women will be diagnosed with ovarian cancer and two thirds will be diagnosed after the cancer has spread making it much more difficult to treat. Join us this March as we Start Making Noise so that together we can make sure that every woman with ovarian cancer has the best chance of survival.
Every year, over 1,000 women under 50 are diagnosed with ovarian cancer. On top of dealing with the emotions of a cancer diagnosis and the physical effects of treatment, younger women often face additional challenges including the loss of fertility or facing an early menopause. Nicola, 31, from Merseyside, tells her story…
Ovarian cancer wasn’t on my mind; it wasn’t on my radar. I never even considered it as a possibility for me.
I was referred to a gynaecologist, and a CT scan showed what looked like a complex cyst. I was told I needed a laparotomy to remove the ovary, and I was scheduled for surgery. After my operation, the surgeon came and told me that she was 95 per cent sure I had ovarian cancer. She said she could see evidence of disease on the back of my uterus, bladder and diaphragm. She’d considered doing a full hysterectomy at that point in the surgery, but decided not to as I hadn’t given my consent.
I was diagnosed with stage III endometrioid tumour with p53 mutation. The wait for histology was one of the worst points. The surgeon told me my prognosis was not particularly good because my type of tumour didn’t respond well to chemotherapy. Thankfully, my oncologist was a lot more optimistic. That’s when I heard about the ICON8b trial.
As soon as I heard about the trial I was really keen to do it. I wanted to be able to help others in the future and make sure I got the very best care.
I have carboplatin every three weeks, and paclitaxel every week. I wasn’t drawn in the pool with bevacizumab (Avastin®), which was disappointing because you want to have every chance. At the beginning, I was so scared. The night before I started treatment we went to a friend’s party and although it was a lovely distraction, I couldn’t get it out of my head that I was starting chemo the next day. On the way home, I cried so much. I just kept thinking “why is this happening to me, it’s not fair”. The thought of chemo was so scary – I thought I was going to be laid up in bed for weeks. But since the start of the trial I’ve been really well, and I’ve had hardly any side effects. My family have all been so positive and supportive.
In February, I underwent a full hysterectomy and tumour debulking. I was actually looking forward to that surgery a lot. Knowing you have cancer inside you is scary; I just wanted it out, but the possibility that they might not be able to get everything out was also frightening. Fortunately, after my operation, the surgeon came to tell me that everything had gone really well. He was able to remove everything that he could see. It was such a relief to know it had all gone. Three weeks later a CT scan confirmed no evidence of the disease.
Being thrown into an early menopause
I was so afraid of going through a surgical menopause. I had visions of waking up as a non-hormonal monster, and I was worried about the effects on my body. I was so terrified that everything that made me me would be gone. I'd heard all the talk of being thrown into surgical menopause, with all the mood swings and hot flushes and everything, and I suppose I’d built it up in my head to a point where I imagined that when I woke up I'd see myself in the mirror but feel like someone totally different. Well, six months or so later it turns out that what makes me me is not just my hormones, a couple of ovaries and a womb! I’m still the same woman, girl, daughter, friend, girlfriend I was before. I still love, laugh and live the same as I did before the diagnosis. I have my moments, I have low days – but I also have days where I wake up in the morning and forget that I've even been ill. I've come to recognise that when I have a low day, that if I drag my heavy legs up and out for a walk, to a gym class or even window shopping I immediately feel better.
Being active is my go-to medicine making me feel happier and more energised. I am not currently on any form of HRT and do experience hot flushes but have learnt to manage them, wearing layers so can strip off or layer up as required. I carry antiperspirant in my handbag and a cute little fan I got on holiday in Greece and it has been a blessing in disguise having short hair after chemotherapy! I also find it really helpful to talk to other people, my friends and even my colleagues about being young and in the menopause. It is not a taboo subject and I am not embarrassed to be in the position I am in. People are very understanding; I have a team of colleagues always willing to build a book tower with an electric fan on top at a moment’s notice, so I can cool my face down! It is also helpful to reach out to other women who are going through or who have been through the same experience as you. I have done so by joining online support groups and getting involved with charity events and fundraising.
Focusing on the positive
I think the worst part of my diagnosis was waiting; waiting after surgery, waiting for chemo. It was also hard having to tell my mum, dad and partner. My mum and dad came to the hospital and the CNS told them the news, which was easier for me. Other people’s reactions were often the worst. I needed people to be positive and not fall to pieces. Luckily my friends were all really supportive – I told one, and she told the rest. It was easier not having to tell lots of individual people.
After my diagnosis, I was offered lots of support – particularly for hair loss. There’s a great Maggie’s Centre at my cancer centre and they have a fantastic gynae cancer support group. I’m also doing a mindfulness course run by the University of Manchester. It’s been useful for those huge moments of anxiety.
I’m keen to tell anyone who’s interested about ovarian cancer and spread the word. It’s less common in younger women, but they often get misdiagnosed because doctors think they’re too young. It’s such a misdiagnosed disease. Raising awareness is incredibly important to me.