Ovarian Cancer Awareness Month – a personal account

Posted on: 22 March 2022 by Tanya Horne in March 2022 posts

March is Ovarian Cancer Awareness month, and one of our PhD students, Tanya Horne wrote about her own experience when she was unexpectedly diagnosed with ovarian cancer six months ago.

One day in August 2021 I was at my lab bench working on my PhD project when plagued by sudden abdominal pain, and less than 24 hours later was lying in a hospital bed wondering if I’d live long enough to see my 11-year-old daughter finish secondary school. I knew enough about ovarian cancer to know that in two-thirds of cases it isn’t diagnosed until after it has spread and that consequently, survival rates were low with less than 45% of women surviving their cancer for five years or more. In 1 in 5 cases, the cancer is found too late for any treatment at all.

Fortune smiled in my case – I underwent major surgery two weeks later which would reveal that my cancer was found at the very earliest stage. Despite having an exceptionally large tumour, all of the cancerous cells were still, somehow, contained within the one ovary. Regardless, it’s been an incredibly tough journey since then.

I was immediately thrown into surgical menopause, as are the vast majority of younger women after ovarian cancer treatment. When facing the dilemma of whether to undergo hormone replacement therapy (HRT) to safeguard my bone and heart health, I discovered that there have never been any major studies to investigate its safety in women with a history of ovarian cancer (and at the time of writing, none are planned). I also realised how lucky I had been to undergo surgery so quickly, given that ovarian cancer patients typically face the longest waiting times of all cancers (except kidney).

When talking to other women about my experience, particularly women under 40, I realised that in general, they were very uninformed about ovarian cancer symptoms, and screening. I, therefore, resolved early in my recovery to do what I could to change this.

Once I was well enough to return to the lab bench, I organised a very informal awareness morning for the people I work and study alongside. I also signed up to take part in Run for Mum, a 5K race organised by leading ovarian cancer charity Target Ovarian Cancer that takes place on Mother’s Day.  The funds raised will go towards awareness information materials like those circulated at the awareness morning I organised; supporting vital research targeting increases in early diagnosis numbers and improved treatments for recurrent disease; and providing support to all those affected by ovarian cancer.

I don’t think you’re ever quite the same after a cancer diagnosis; I know I’m not. I’ve heard it best described as like having the barrel of a gun held permanently against your head.  When I went for my first follow-up scan last month, it felt as though the trigger were being squeezed, and I found it hard to sleep or to concentrate until after receiving the all-clear. Likewise, the pressure against my skull increases with every advertisement for menstrual products, pregnancy announcement, and happy retirement post that filters through my social media feeds – reminders of things I’ve lost, and of milestones I’m now more unlikely to reach. Although I haven’t sought counselling or other mental health support, I can fully understand why it’s vital to many, which makes it all the more disappointing that 75% of ovarian cancer patients in the UK currently say they didn’t get as much support as they needed. If I can reach my fundraising target of £1000, that will enable 58 more people to receive the help and advice they need via the Target Ovarian Cancer Helpline, which I know from experience will make a big impact on the lives of those 58 and their loved ones.

A recent survey found that, astonishingly, only 1% of women were aware of one of the main symptoms of ovarian cancer – needing to urinate more often. It also revealed that only 20% knew that bloating was a main symptom. By comparison, over 25% of women under 45 knew who the winner of Love Island was last year.

The other main symptoms of ovarian cancer are a change in appetite, feeling full quicker, and pelvic or abdominal pain. Although I had most of these symptoms and had visited my GP with them, ovarian cancer wasn’t raised as a possibility because I was under 40. Although the disease is more common in post-menopausal women, it can develop at any age, and in fact, some subtypes (such as mine) are more common in younger women. I belong to an ovarian cancer support group where the average member age is 39, and our most recent new member is just 19. There’s no such thing as being too young for ovarian cancer.

One final discovery the survey revealed was that almost half of women mistakenly think that their cervical smear test screened for ovarian cancer. There is no screening test for ovarian cancer, which is why we must do better when it comes to spreading awareness of its symptoms. I’m a living example of how crucial early diagnosis is, and so I hope you will join me this month in starting conversations about the disease and how we can all better support women living with and beyond ovarian cancer.

Tanya Horne is currently in the second year of her PhD in the Evolutionary Microbiology Lab, within the Department for Evolution, Ecology and Behaviour. You can read more about her ovarian cancer story and support her Run for Mum fundraising by visiting https://join.targetovariancancer.org.uk/fundraisers/tanyahorne/

Target Ovarian Cancer: Key Symptom Survey - https://targetovariancancer.org.uk/news/do-enough-us-know-symptoms-we-investigate