Volunteer Patient Advocate Committee Member, Europa Donna
Social media and other online platforms could help women with metastatic breast cancer access emotional and peer-to-peer support to the levels already experienced by those diagnosed with early breast cancer.
“There is a strong public understanding of early breast cancer (EBC) diagnosis and there are lots of resources available,” according to Tara Byrne, patient advocate at breast cancer charity Europa Donna Ireland.
“Survival rates have greatly improved for EBC but there is a much slower pace of innovation in metastatic breast cancer (MBC), so the same improvements in survival rates have not been seen,” Byrne says. “The five-year survival rate for MBC is just 25%. which is a devastating prognosis for those diagnosed. This strengthens the need to urgently close the gaps in both clinical and support services”
“While an MBC diagnosis is terminal, more women are living for longer with MBC and a real challenge for these women is to achieve the best quality of life while managing the disease,” Byrne explains. “MBC still carries a stigma and many women are afraid to talk about it.”
Social media, messaging systems and specialist apps provide unrivalled opportunities to extend support to those living with MBC and help close the gap with the services provided for EBC, Byrne says. “We need to build support networks to help women with MBC cope with the treatment and side effects of their illness while continuing to fulfil their daily role as partner, parent, colleague, friend, and family/community member. “Without the proper support structures in place for both patients and their supporters, MBC can put enormous strain on all close relationships.”
Mutual support online
Digital services have many advantages over conventional support groups. They are available 24/7 and give access to women at a national and international level who will have experienced the same challenges and can share advice and give practical support and encouragement. Byrne points out that 64% of women diagnosed with MBC are under the age of 65, so the digital world is familiar to them.
MBC patients can join a social media page, (originated in Ireland) which has a public face, behind which exists a secret group that is accessible only by invitation. In this private space, all women living with MBC can chat confidentially, share experiences, learn from each other and get the support they need. This protected environment allows the women to gain confidence in an enclosed internet community.
The need for social support when living with MBC is also assisted by a messaging network. Byrne says. “It gives a real sense of inclusion. Messages can be sent at any time on any topic – from the serious to the frivolous. This can be a great help in reducing feelings of low self-worth and loneliness. One woman posted that it was her birthday and got more than fifty messages congratulating her, which gave her a great boost. Knowing that such a volume of support is nearby genuinely helps manage the pain and fear of living with a terminal illness.
Emotional? There’s an app for that
In collaboration with Europa Donna, Pfizer’s app ‘Emotionspace’, can be used to help MBC patients cope with tools that enable them to track their emotional state, set goals and establish routines to help them get through the day and combat tiredness. “Smartphone technology can help manage daily living and also provide valuable data for the patient, their supporters and healthcare professionals,” says Byrne.
Byrne, a marketing professional and patient advocate, was diagnosed with early breast cancer at the age of 35 and made a complete recovery. In search of initial support, she joined a breast cancer support dragon boat racing club, an activity that combines fitness and socialising in more or less equal proportions. But there was a dark side: “Of the core active membership of 50 paddlers, 11 were lost to MBC within four years, the majority of those dying within a really tough 18-month period,” Byrne recalls. “It was then I realised that the MBC group of ladies had a different set of needs.”
This led to involvement with breast cancer charity Europa Donna Ireland, which is an advocacy and support organisation. As a volunteer, Byrne promotes awareness of this terminal disease and is a moderator of the social media platform. “I believe that women with MBC can have an improved quality of life if they get the right support. The accessibility to 24/7 digital tools is proving a crucial support to some of the c. 3,000 women currently living with MBC across Ireland.”