‘Start Making Noise!’ is the rallying cry from Target Ovarian Cancer as a month of awareness activity gets underway. The charity’s Rebecca Rennison explains why we should all be deafening our nearest and dearest this March.
Today (1 March) is the start of Ovarian Cancer Awareness Month, and charity Target Ovarian Cancer is asking everyone to Start Making Noise to raise awareness of the signs of the disease.
Just one in 20 women know the symptoms of ovarian cancer, and nearly half of GPs believe that symptoms only present in its later stages. Yet early diagnosis saves lives – something the Target Ovarian Cancer’s Pathfinder 2016 research throws into sharp relief.
Late last year we completed the most in-depth study of people living and working with ovarian cancer in the UK in the form of our groundbreaking Pathfinder study. This meant asking women who have had a diagnosis of ovarian cancer, their family and friends, GPs, and gynae cancer nurse specialists how they are getting on, and what their experiences are, and have been, when it comes to diagnosis, treatment and living well with the disease.
We also spoke to women in the general population to find out how aware they were of ovarian cancer and its symptoms. What we found only made us and our brilliant supporters more determined to Start Making Noise and build better awareness of the disease and its symptoms, across the UK.
Symptoms of ovarian cancer are frequent (they usually happen 12 times a month or more) and persistent, and include:
• Pelvic or abdominal pain
• Increased abdominal size/persistent bloating
• Difficulty eating/feeling full quickly
• Needing to wee more urgently or more often.
Other symptoms can include unexpected weight loss, changes in bowel habits, and extreme fatigue.
If you regularly experience any of these symptoms – and they are not normal for you – visit your GP.
Who knows about the symptoms?
Awareness of the symptoms of ovarian cancer has risen since the first Pathfinder in 2009, with one in five UK women now able to name bloating as one of the main ones. This shows that the work we have all put into raising awareness is paying off.
But it also shows how much remains to be done, and Pathfinder 2016 calls for governments across the UK to fund national awareness campaigns so that every woman knows the symptoms to look out for.
Public Health England has just announced a trial awareness campaign as part of Be Clear on Cancer in the West and East Midlands, something we warmly welcome. And in Wales the Petitions Committee has just released a report, which calls on the Welsh Government to act to raise awareness of the symptoms of ovarian cancer.
GPs are so important in ensuring more women are diagnosed sooner. Pathfinder 2016 shows that GP knowledge of ovarian cancer is increasing but 44 per cent of GPs still wrongly believe that symptoms only occur in late stage disease and 41 per cent of women are having to visit their GP three times or more before being referred for diagnostic tests.
We are doing all we can to help address this, working with GPs across the country on our GP education modules, which help them to learn more about ovarian cancer and how to diagnose it sooner. We’re now going to step this up so that every GP knows the symptoms to look out for.
Finding out about genetics and ovarian cancer
Thanks in part to Angelina Jolie’s story, many more women now know about the importance of knowing your family history of cancer. It remains one of the two biggest risk factors for ovarian cancer – the other being age, as you’re more likely to get it if you’re over 50.
Pathfinder shows us there is still room for improvement when it comes to women’s knowledge of genetic links and ovarian cancer. Among women in the general population, just one quarter think that genetics might be a factor in developing ovarian cancer and just under half of women with ovarian cancer (44 per cent) are aware there might be a genetic link.
Women with ovarian cancer (who, if they have the most common type of ovarian cancer, are automatically eligible for genetic testing) told us it was very important to have the right support in deciding whether to proceed with genetic testing, with 86 per cent saying women should be offered genetic counselling to help prepare them.
Research by Dr Marc Tischowitz, funded by Target Ovarian Cancer, last year announced a model to ensure all women with ovarian cancer are offered counselling by genetic services prior to being tested – and this is now being rolled out more widely.
What support do women get?
Specialist nurses provide women with ovarian cancer with the care and support they need. Pathfinder 2016 shows that these nurses are becoming increasingly stretched. Fewer than half of them (46 per cent) believe that their cancer unit has enough nurses to care for all the women being treated there and just 63 per cent say they are able to meet all of women’s medical needs such as symptom control.
Many women with ovarian cancer report going without the support they need, both in managing symptoms and treatment side effects, but also with managing wider issues such as body image and mental wellbeing. And 80 per cent of women report experiencing mental ill health as a result of their diagnosis.
Making noise – and making change
We will continue our hard work to raise awareness of the symptoms of ovarian cancer, help train more GPs, provide more support for women with the disease and keep pushing to find new treatments. Join us as we Start Making Noise this March for Ovarian Cancer Awareness Month and spread a little knowledge of your own.
To read Pathfinder 2016 and for more information visit the Target Ovarian Cancer website.4020 Views