Rosa exists to amplify the voices of women and girls in the UK, and through its Health & Wellbeing pillar aims to tackle the most pressing issues faced by those from a cross-section of backgrounds. Ahead of Everywoman Day on September 3 – which draws attention to everyday women doing extraordinary things to manage the challenges of reproductive health conditions – Rosa asked ovarian cancer charity Ovacome to spotlight the disease’s symptoms and dispel its myths.
As rates of ovarian cancer diagnoses increase (they’re predicted to rise by 15 per cent between 2014 and 2035), so funding diminishes for clinical studies into the disease. Ovarian cancer’s share of funding for clinical studies by The National Cancer Research Institute has dropped by half, from 3.2 per cent in 2003/4 to 1.6 per cent of all cancer research in 2016/17.
Equally shocking is that almost six in 10 cases in England are diagnosed at a late stage – often down to symptoms being confused with those of less serious health conditions, such as irritable bowel syndrome. There is also currently no routine screening test for ovarian cancer, which makes the disease even more difficult to detect.
For women living in poverty, BAME women, those for whom English is a second language, and members of the LGBTQ+ community, the need for representation and reliable information is more prevalent than ever.
“I was diagnosed with stage 4 ovarian cancer after several months of what I thought was irritable bowel syndrome. I had never heard of ovarian cancer.”
This is all too often the message that we hear from women who were diagnosed once their cancer had spread and was at an advanced stage. Despite the fact that over 40,000 women in the UK are currently living with the disease, research has shown that just 4 per cent of the female population are very confident about naming a single one of its symptoms.
Yet, we know that women’s ability to recognise their symptoms can be key to increasing their chances of early diagnosis. Survival rates rapidly decrease between stage 1 and stage 4 of the disease.
This is why it is so important that we open up the conversation surrounding ovarian cancer and work with community groups and organisations to raise awareness of its signs and symptoms. If the disease is found at an early stage, treatment can have far better results. UK ovarian cancer survival rates rank 45th out of 59 countries across the globe, according to research published in The Lancet. Data from 2010-2014 found that only 36.2 per cent of women in the UK survive beyond five years, compared with 43.5 per cent in France. Of course, this is not just due to late diagnosis, but also due to lack of investment in treatment options. That said, early diagnosis is a good place to start effecting change.
Every year, Ovacome supports around 18,000 people who have been affected by ovarian cancer. The good news is that we have seen real progress being made in treatment for those diagnosed and in public awareness of the disease. However, we are acutely aware that there are certain groups who are less well-represented among those we support and we need your help to reach them with this important health education message.
First, let’s dispel a few myths:
- There is no effective screening tool for ovarian cancer; smear tests do not detect the disease
- About 15 to 20 per cent of women diagnosed with the disease have an inherited gene fault, which can cause ovarian cancer. This genetic mutation can be inherited from the father or the mother’s side
- Ovarian cancer is sometimes mistaken for irritable bowel syndrome, although IBS rarely occurs for the first time in women aged over 50
- It is a less common cancer, but even so, 1 in 52 women will be diagnosed with the disease
- It is diagnosed most often in women over the age of 55 who have been through the menopause; however it can be diagnosed at any age
- There are more than 100 types of ovarian cancer. Treatment, diagnosis and survival rates vary widely between the different types of the disease.
There is no screening tool for ovarian cancer, but there are some common symptoms that many women experience before diagnosis.
Symptoms can include:
- Changes in bowel movements and frequency
- Extreme tiredness or fatigue
- Backache
- Vaginal bleeding
We need your help to improve outcomes for women with the disease. We want to work with community groups across the UK to ensure that there is a greater awareness of ovarian cancer, of its symptoms and of the support available to those affected by the disease. We are especially keen to work closely with those representing people who are:
- BAME
- LGBT+
- Women aged 70 and over
- Those living in rurally isolated areas of the country
- Those with English as a second language
- Those living in poverty/under financial pressures
Ovacome has been working to develop resources for these communities, to ensure that we reach and support them in the best way possible. However, we know that with your help, we will be able to raise awareness much faster. We can provide expert speakers for groups or events and can offer a variety of different resources, both printed and electronic. We also have funds available to work with you to develop our resources, as we know that you will be best placed to help us tailor our information and make it accessible to your communities. This will ensure that more women are aware of the early symptoms of the disease and know where to seek support should they need it.
If you are able to work with us to open up the conversation about gynaecological health and ovarian cancer, please do get in touch via support@ovacome.org.uk or by calling Victoria on 0207 299 6654.
If you have any questions about ovarian cancer or would like to discuss our work, please phone our support line on 0800 008 7054, Monday to Friday between 10am and 5pm and until 8pm on Tuesdays.