Following the success of their 2022 campaign (winner in the Inspiring Collaborations category at the World Ovarian Cancer Coalition Impact Awards), the Irish Network for Gynaecological Oncology (INGO), together with medical professionals and patients around Ireland will work to raise awareness of ovarian cancer in conjunction with the World Ovarian Cancer Coalition this May. The focus again this year, will be on an information campaign revolving around the BEAT acronym (Bloating, Eating, Abdominal Pain, and Toilet Habits).
• Bloating that is persistent and doesn’t come and go
• Eating less and feeling full more quickly
• Abdominal and pelvic pain you feel most days
• Toilet changes in urination or bowel habits
Women across Ireland are being asked to know the signs and symptoms of ovarian cancer and to go to their GP if they are experiencing symptoms for three weeks or more. Early diagnosis can significantly improve survival. 83% of patients diagnosed with stage one ovarian cancer are alive 5 years after diagnosis whereas only 16% of patients diagnosed with stage four ovarian cancer are alive 5 years after diagnosis.
Over 400 women present with ovarian cancer annually and most cases occur in women over 50 years of age. Worryingly, research commissioned by the INGO in 2022, highlighted that 79% of women in Ireland are not confident they would notice a symptom of ovarian cancer. And a common misconception among women is that cervical cancer screening (smear tests) also screens for ovarian cancer. This is not the case; there is no screening programme for ovarian cancer in Ireland.
In addition to knowing the signs and symptoms of the disease, when it comes to ovarian cancer, knowing your risk factors is equally important.
• Reproductive history: If you have no children or have your first child after the age of 35, your risk of developing ovarian cancer is higher. Breastfeeding may lower a woman’s risk of developing ovarian cancer. Taking the oral contraceptive pill may also reduce a woman’s risk of developing ovarian cancer. Research has shown that the longer you take the pill, the more your risk is thought to come down.
• Age: Ovarian cancer usually affects women who have been through the menopause.
• Family history of cancer: If you have two or more close relatives (mother, sister or daughter) who have had ovarian cancer or breast cancer, you may be at a higher risk of the disease. Having relatives with ovarian cancer does not necessarily mean that you have a faulty inherited gene in the family. Faulty genes can lead to ovarian cancer in a very small number of women – about 5-10%. These include the genes BRCA1 and BRCA2. There is also a very small risk of ovarian cancer if your family have the genetic mutation known as Lynch Syndrome.
The Irish Network for Gynaecological Oncology comprises over 30 of Ireland’s foremost gynaecological cancer campaigners, researchers and patient advocates. The aim of the group is to raise awareness of gynaecological cancers across the Island of Ireland. The group are part of an international effort for two major awareness events annually; World Ovarian Cancer Day on May 8th and World Gynaecological Oncology Day on September 20th. Another significant collaboration among Irish clinicians and researchers is the Women’s Health Initiative. One of the larger programmes funded by the Irish Cancer Society. This is a national effort with studies based in Cork, Galway and Dublin, aimed at developing services and tools to identify and manage symptoms and side-effects for women which have resulted from their cancer and cancer treatments, including ovarian cancer. The overall goal of the project is improving quality of life. These pilot studies are being monitored for effectiveness based on patient experiences and outcomes, and it is hoped that after the initial pilot scheme, it will lead to the rollout of a national programme for gynaecological cancer survivors. There have already been several outputs from this research, to support ovarian cancer patients and their families directly.
Firstly, the development of ‘diagnosis imaging cards’. As many people affected by cancer will be aware of, trying to retain all the information about their cancer at time of diagnosis can be difficult.
Given the complexities of the cancer, and of the female anatomy, it can be hard to understand everything, and even harder to relay this information to family and loved ones afterwards. These diagnosis images provide helpful diagrams and information for the patient to take away with them. The response to these cards has been overwhelmingly positive; such a small change can have a big impact on improving the patient experience.
The second output has been the development of a tailored online resource for women affected by ovarian cancer. The platform is called this is go, a site dedicated to gynaecological malignancies. This website allows patients to create a profile containing their details, such as their diagnosis, and provides customised, up-todate information specific to their needs. As misinformation relating to cancer is widespread, it can be extremely difficult to access accurate online information, and understanding what is relevant to the Irish context can be challenging. This resource makes this significantly easier for patients, providing them with a trusted resource. There are also sections for healthcare professionals, ensuring a standardised approach to care across the country. Finally, there are plans to expand the website to include a section for family members to access information tailored to them, which will include information about cancer and caring for your loved one. Currently, the following sections are live on the site: ovarian, cervical, uterine, vulval, vaginal, BRCA, Lynch Syndrome, and a site dedicated to healthcare professionals. For more, see: www.thisisGO.ie
Written by Aoife McNamara, Education and Engagement Manager, Irish Cancer Society