By Annwen Jones.
We need to talk about ovarian cancer.
I have been the Chief Executive of Target Ovarian Cancer for eight years, which is also how long the charity has existed. Every week we hear from women who have been diagnosed with ovarian cancer who remind us that there is still so much that we need to do to promote early diagnosis, more research, and support for women who have been diagnosed and their families.
Ovarian cancer can be devastating. Far too many women are diagnosed late, once the cancer has already spread, making treatment more difficult. But we know that when a woman is diagnosed at the earliest stage, her chance of surviving for five years or more doubles from just 46 per cent to more than 90 per cent, which shows why early diagnosis is so, so vital.
This March is Ovarian Cancer Awareness Month, and we’ve launched a campaign to make noise and shout out about the symptoms, because early diagnosis saves lives. So before I go any further, here they are:
- Persistent pelvic or abdominal pain (that’s your tummy and below)
- Increased abdominal size/persistent bloating – not bloating that comes and goes
- Difficulty eating or feeling full quickly
- Needing to wee more urgently or more often than usual
These symptoms will be frequent (happening more than 12 times per month), persistent, and new to you.
Despite a relatively low five-year survival rate, there is a lot that we do know about ovarian cancer. The most important thing is that this disease can be diagnosed earlier if more people are well-informed about the symptoms – and there are early stage symptoms, which is why I put them front and centre here. We also know that the nature of these kinds of symptoms means they can be written off as other things.
Irritable Bowel Syndrome (IBS), the menopause, endometriosis, depression, and many other problems have been cited as possible reasons for symptoms in women who have much later been diagnosed with ovarian cancer. Women like Ali, from Gloucestershire, who was told that her symptoms were a urinary infection, then part of her menstrual cycle, and even appendicitis. The important thing is to know what is normal for your body, and be alert to changes in how you are feeling.
Women who suspect they might have symptoms should try to keep a diary of how they are feeling – you can do this using our Symptoms Diary app or downloading a version from our website. Then take it along and speak to your GP about how you are feeling – we’ve got some tips on this here. Ali credits her partner Darren for being a huge help and support when she was getting diagnosed, as he encouraged her to keep going back to the doctor and asking them to look again.
Treatment is usually a combination of chemotherapy and surgery, although if ovarian cancer is caught early, surgery alone may be an option. Platinum based chemotherapy is widely used to treat ovarian cancer, and most women go to the chemotherapy unit at their local hospital. However, sometimes the cancer can still come back, even years after finishing treatment for ovarian cancer. If this happens, it means that the cancer is either sensitive, or resistant to the chemotherapy available, and different drugs may need to be used.
Unfortunately, if the ovarian cancer comes back, it is rare that treatments make the disease disappear forever – it almost always comes back again at some point. If the cancer comes back, treatments will be about keeping the disease under control and helping a person to feel well.
There have unfortunately been very few drugs developed for the treatment of ovarian cancer in the past 20 years, and there is an urgent need for progress. If we matched the achievements in breast cancer in the last 20 years, over 3,000 more women would survive each year. This is why, very early on as a charity, we launched a UK-wide research grants programme specifically for ovarian cancer. Many women who have been diagnosed and their loved ones do amazing work to fund-raise and spread the word to others. Lorraine raised £1,400 last November and you can read her story here.
In the past we have funded research into palliative care for women with ovarian cancer, potential new drugs, new methods for early detection of the disease, and genetic testing and counselling. Our research projects are happening up and down the UK, in places like Oxford, Nottingham and Cambridge. We also undertake our own research into what it is like to live with ovarian cancer – this is our flagship Pathfinder study, which we do every few years.
It is the most wide-ranging study ever undertaken into the experiences of people living and working with ovarian cancer in the UK, and underpins our desire to make sure all our work is supported by independent evidence of where the need is greatest. The findings from our study have led to increased investment in diagnostic tests for ovarian cancer, and the piloting of a Government-funded awareness project.
Lots has been said about relatively recent advances in research around genetic mutations and links to breast and ovarian cancer. Angelina Jolie drew the attention of women across the world last year when she underwent an operation to remove both ovaries and fallopian tubes, in addition to a double mastectomy two years previously. Angelina Jolie had what up to one in five women with ovarian cancer face: a strong familial history of breast and ovarian cancer. This family history is most likely caused by a mutation (‘fault’) in either their BRCA1 or BRCA2 genes. All women who are diagnosed with high-grade serious ovarian cancer should be tested for this mutation, to ensure their families know what their risk factor might be.
To anyone who is worried that they might be at risk, you need to look at whether your family has two or more cases of ovarian cancer, or ovarian and breast cancer diagnosed early in close relatives, such as your mother, daughter, sister, grandmother, aunt or cousin. And don’t forget to look at your father’s side of the family, because men can pass on the mutation too. If you are worried, speak to your GP. You can find out more about familial risk of ovarian cancer here.
During Ovarian Cancer Awareness Month this March, will you make some noise about the symptoms of ovarian cancer by telling three of your friends, and challenge them to pass the word on? Or if you want to join the party and get involved with Target Ovarian Cancer, why not get friends and family together to share tea and cake as we ‘bake some noise’ – or maybe you’d prefer to ‘dress louder’ and impress friends and colleagues at work or school by wearing something shocking – whether that’s your tackiest t-shirt or stripiest socks! You can find out more and order free fundraising packs including symptoms leaflets, balloons and pin badges by visiting www.targetovariancancer.org.uk/startmakingnoise.
Whatever you choose to do, please make sure that you and your loved ones are aware of the symptoms of ovarian cancer, because early diagnosis saves lives!
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Annwen Jones is the Chief Executive of Target Ovarian Cancer, the UK’s leading ovarian cancer charity. They work to improve early diagnosis, fund life-saving research and provide much-needed support to women with ovarian cancer.