Two out of three women with advanced breast cancer feel no one knows what they are going through and more than half found there is no support for their needs.
Just over 40% found that support from family and friends waned over time.
While Ireland was not included in the survey of 1,300 women with advanced breast cancer across 12 countries, the Irish Cancer Society said the findings match what women with advanced breast cancer are telling them.
The Novartis Oncology- supported survey Count Us, Know Us, Join Us found more than three quarters of women with advanced breast cancer looked for information specific to their needs, but 55% found that the information was usually about early-stage breast cancer.
Clinical and educational psychologist and ICS facilitator, Áine Melinn, said women first diagnosed with breast cancer instantly became part of a vibrant breast cancer community.
“The findings of the global survey match what women with advanced breast cancer tell us directly at the ICS,” she said.
Around 700 women are diagnosed with advanced breast cancer every year in Ireland and up to 3,000 women could be living with the disease that has gone beyond the early stages.
Over the summer, the ICS found that emotional support and information were the two areas most important to 23 women who attended their Living Life programme for people with all types of advanced cancer.
The women said they could feel very isolated and that they needed special support in expressing their feelings with their partners and especially their children.
They wanted to know the best drugs for them and were often “a drug ahead” of their oncologist and always wanted to know the options available to “buy more time”.
The women also wanted to meet other women with advanced breast cancer for peer support, especially when newly diagnosed.
They asked for more advice, support, and information, possibly during their local cancer support sessions.
ICS patient support groups’ co-ordinator Deirdre Murphy said she hoped the research would lead to a better understanding of people with secondary cancer and the provision of the help they need. “The society provides a wide range of advice, support and information services to people with advanced cancer and we want to increase awareness of those supports,” she said.
National Cancer Helpline 1800 200 700.
© Irish Examiner Ltd. All rights reserved